Newcomers Club / Welcome Wagon

[Christine]

On behalf of the Board of Directors and members of the HER2 Support Group, I wish to welcome all of you to our website.

This group was formed in 2001, after I was declared to be cancer free after being diagnosed as stage IV with chest and brain tumors in 1999. It was through self-education of breast cancer treatments and specifically the HER2/neu gene that enabled me to make the correct decisions about my treatment options. I remain cancer free today. I am a health educator.

This website was built around the wealth of research that I gathered in my 2 years of active treatment. Follow the links on our homepage: www.her2support.org (http://www.her2support.org/) to access this information.

These message boards are designed to give you a forum where you can post your questions and concerns about anything that is on your mind. We have had women from over 100 different countries visit this site.

Hugs, well wishes and longevity to all,
Christine H. Druther MSPH
Founder/Director HER2 Support Group

[Ginagce]

again for creating the newcomers page.

I posted a question on there regarding working while on treatment. I think perhaps I should have posted it on the general her2 board as it's the "old timers" I'm interested in hearing from.

I'm not clear on what types of questions should go where.

Thanks for your help & directions.

Gina

[Kimberly Lewis]

Thanks for the site. I am just now getting a port for Herceptin treatments to start. My 4th radiation today.... I had a bad allergic reaction to taxol and am wondering if that makes me more susceptable to having a bad reaction to the Herceptin also? Any ideas or experiences on this? Thanks

[Maryanne]

Hi Kimberly,

And welcome to the site!
Herceptin is a totally different drug. If you read some of the posts you will find some members take Benedryl before Herceptin. Check with your onc as to if they think you might need this. I am still on Herceptin and have had no reactions what so ever.and took nothing, I did however have an awful time with the Taxol.

Best of luck and again welcome.
Maryanne

[Pam Bellendir]

Have been visiting this site for a few weeks now. Love it and all the support it provides. Will write later when I am not in a hurry. Thanks again to all who participate.

[RobinP]

Hi,

I love her2support; I just starting using it agains recently due to the new recommedations for Herceptin after Adjuvant.

Robin

[Diana1993]

I have been visiting this site for a few weeks, and I just can't believe the useful information I have aquired. The positive threads give me hope that all is not over and done yet. I joined the breast cancer club in 1993. I have recently been put on herceptin, September 19, along with taxotere. Luckily, I have had few side affects and I am halfway through the taxotere treatments. I am having kidney stents, or ureter stents removed on Thursday, because the tumours are no longer there to interfere with flow. I have been on cloud nine for the past few days because these stents are the most bothersome part of this lastest battle. After Thursday I will have nothing to whine about. Yes!
Life's a dance,
Diana

[Sukey]

...Hope I am in the right place for this posting...On Nov 9, I was found to have recurrent BC via removal of supraclavicular lymph nodes after almost 7 years being cancer free. My concern arose after a year's therapy for lymphedema in my right arm didn't seem to be controlling swelling, a decrease in strength and grip in my hand and arm. Treatment/therapy worked for about 10 months; mammo in August OK. Late August thru mid-October things just didn't seem to be comfortable...thought my radiation oncologist might have seen abit more of this sort of thing than my PCP and lymphedema therapists.
He picked up on "the node" right away and the merry-go-round began again. MRI, PET and related CT scans showed neoplastic activity in the brachial plexus...no where else at this time. Being told I now have stage IV/incurable breast cancer is beyond scary...But between my 2 wonderful oncologists, they have decided to do radiation first in the hope of putting the genie back in its bottle (and I am mid-way in those treatments) and to give me back use of my hand and arm (VERY swollen and quite painful...underlying lymphedema not helpful) and secondly, to keep the genie there with Herceptin. NO chemo, no port at this point...save the "big guns" for later should it be necessary. Abit spooked by IVs now after chemo (CMF) in 1998 and wobbly veins with so many subsequent tests. ER/PR-...HER2 +++ then and again now. Has anyone out there been in this place w brachial plexus involvement? Will I get my hand/arm back? I know I will still have to deal w lymphedema but I can handle that ok...at this point, I cannot pick up piece of paper...ulnar nerve very compromised and index finger also NO help. this posting sounds so disjointed but I wanted to ask so many things in a tiny amount of time....thanks for YOUR TIME

[Candy]

Hi, This is my first visit to this site.
Candy

[DianaK]

Hi

I have been lurking here for quite some time and I just can't say enough how grateful I am for this site!I have learned so much here-what a wonderful,supportive group of people.
DianaK

[Candy of Yorktown]

After a PET/CT and bone scan I have been diagnosed w/soft tissue mets. Anybody know anything about this.?

[Ladylu]

I admire ALL of you out there that have had to go through this! GOD bless you all.
I think I just need prayers & assurance as I go for my 6 mo. folow-up Mammo this Fri. 2-17 11:30 A.M. EST, had a breast biopsy done last Aug...........Fibrocystic Lumps...........Breast Cancer runs in family had a sister who I lost in 1992 @ 44 due to breast cancer......I am very scared as I've heard some Mammos are hard to interpret after having a biopsy......can anyone give me more consolation please?
One more GOD Bless you all

[angie]

hello, can anyone tell me just what it means to be HER2 positive?

[G.Ann]

I'm 59 years old and diagnosed February 2004 with invasive ductal cancer, her-2 neu 3+ (strong), stage 2a, tumor grade 3, tumor size 2.5 cm, but no lymph node involvement, and er/pr negative. Had mastectomy February 2004. Received only 4 treatments of Adriamycin/Cytoxan every three weeks but no taxane drugs (Taxol or taxotere) due to oncologist saying benefit would only up the percentages 1-2% and the risks and side effects of taxane drugs were greater. After 15 months since last chemo treatment, started to receive Herceptin every three weeks after going outside of my medical group for second opinion regarding Herceptin. MUGA scans normal so far. History of multiple cysts in both breasts, which were periodically drained over 7-8 years prior to cancer. Malignant tumor did not show up on mammogram in 2003, probably due to dense breast tissue although "lump" felt by doctor and me before mammogram. When I went to doctor to have "lump" drained because I was having pain, it turned out to be cancer.

Have had 4 cysts in remaining right breast since 2004 that have been drained, one solid lump biopsied Jan. 2006 that did not show cancer, plus now latest mammogram Jan. 2006 showed microcalcifications--they are loosely clustered (not indicative of breast cancer), but calcifications have increased from mammogram done in 2005. Recommendation from oncologist is to wait another six months for another mammogram. Surgeon will remove remaining breast for "peace of mind" but feels there's no need now. No MRIs, CT scans, or cancer screening tests ever done within my HMO as oncologist said my symptoms of remaining breast do not warrant further testing.

I would like some feedback regarding microcalcifications and comments about cancer tests and screenings in general. Sorry if I'm posting in wrong site--I'm not up on all the "how to's" to post. I've learned so much from reading messages over the last six months and look forward to responses. Thanks.

[Kimberly Lewis]

my own experience led me to believe that removing the 2nd breast was my best option. My first sign of trouble was microcalcifications that they never mentioned to me and waited till the next year to see if there was any change. By the time they followed up and I went to surgery my breast had a 5cm tumor and 7 nodes out of 20 that were positive with extensive lymphatic and vascular involvment. When they found suspicious spots in my right remaining breast I had no hesitation - waiting before really hurt me! You have to live with your decisions, thank God you have the chance to make them instead of finding out a year later that someone else made them for you. Hope it works out for the best.

[tricia keegan]

Thanks for the welcome and just want to say a big hello to everyone here.
I was dx last July and am currently undergoing rads with Herceptin having finished chemo a month ago.
I have been here before but never posted.It's a great place and glad I was directed here by the Komen site.
Love to all
Tricia

[dogladybarks]

Hi there!

Just poking my "nosey nose" in here to say hello to all! I have been reading this board for a few days, looking for a board that was well-run and informative, to hang out on. This is a terrific board..you have done an incredibly great job. Kudos to you!

Sue

[mimima]

Christine - Thanks to all members. This site is invaluable. I can tell already. I joined HER2 support a day or so ago and am already learning a lot and getting prepared for a second opinion consultation.

I have never participated in any internet forums and haven't a clue about how you do things, threads, answers, etc. I'll probably learn by jumping in (somehow my cancer decisions are just jumping in - without adequate explanations). Any tips? mimima

[janiec]

Please send me any info you can about using herceptin as the only treamtent for primary breast cancer. Here's my situation: I'm stage IIb, er/pr negative, her2 +, 8/9 bloom-richardson, 3/3 nuclear. My lumpectmy six weeks ago got clean margins, with one sentinnel node positve.

Currently I have read everything about herceptin and negotiated with my oncologist to use only herceptin in the month of May, adding taxitere and cycotin in June. I am STILL reluctant to add these two chemo drugs. If herceptin kills the cancer cells with that receptor, then why would chemo be necessary?

I am trying to get opinions about this from docs who might have enough knowledge to hypothesize, but so far no luck. I called the doctor in Chicago who worked on the first two clinical trials, but she won't talk with me unless I'm her in house patient (not practical since I;m in Austin, TX).

Thanks! janie

[SherryS]

Janie, it's my understanding that herceptin is NOT a chemo drug. It does not work in the same way as a chemo drug (AC & Taxol were what I had for chemo). The herceptin attaches itself to the cells to stop them from over-expressing the her2 protein. This is just a basic description as described to me by my onc. and the nurses. My dx is similar to yours -- Stage II, ER/PR-, Her2+, 1 tumour 2cms, clear margins and 1 sentinel node + (of 27 taken). I had a lumpectomy & a lymphectomy followed by 8 courses of chemo (4 AC; 4 Taxol), 30 hits of rads and now I'm doing herceptin. The chemo & rads are to kill the cancerous cells -- the chemo on one end of growth & division; the rads on the other. Herceptin, to my knowledge will not kill cancer cells. There is information about herceptin and what it does on this site and it is very helpful. I honestly have not heard of anyone using just herceptin in a case like ours. I'mhappy w/the course of treatment that was prescribed for me. I believe the herceptin will work to prevent and give a 50% chance of the cancer not returning. As for anything that might still be lurking that hasn't been "attacked" by chemo & rads, that I'm not sure. All the best as you are searching for information & making your decision.

[janetcaruso]

Hi! I just found out about this site so thought I'd sign up. After thinking I was heading in for my last Herceptin infusion on Monday, I just learned I'll be on it "for life" (every 3 weeks). It seems to be working, so that's good, but I just didn't expect to have to continue going in every three weeks for ever. I'm wondering now should I get a port (my veins are quite small & they sometimes have trouble getting a good one), will my fatigue ever go away and will I ever lose the excess fluid I've been retaining? (I finished Taxotere 6 months ago and am still 15 lbs heavier than I used to be.) Any other Herceptin "Lifers" out there? Janet

[janetcaruso]

Hi Janie
From what I understand, Herceptin in more effective when combined with or immediately following chemotherapy. They've show Herceptin alone to make a positive difference after 9 treatments, but the difference is more marked when taken along with chemotherapy. I am stage 4 with mets to bones & liver and was on Taxotere + Herceptin & from a scan taken after just 4 doses spots on liver had all but disappeared. Was it one or the other or the combination or all the herbal remedies I was taking??? I don't know but I just wanted to do whatever I could to get rid of the beast!!! Best to you!! Janet

[MaryL. A]

thank you for your information. I also was diagnosed with stage IV with met. to 12 lymph nodes, liver and now starting in my sternum. I am praying for the day I will be cancer free. I am now on Xeloda and Herceptin treatments. I am going to my onc tomorrow and am going to ask about the new drug Tykerb that is soon to be available. God Bless and thank you again. It's positive news like yours that keeps me going

[MaryL. A]

Dear Janet,
I also was told I would be on Herceptin for life. This past week a new drug has been making news. It's called Tykerb. I am going to inquire about it tomorrow when I see my onc. I will let you all know about my results. Today is the first day on this web site and I want to thank you all for sharing your info.

[janetcaruso]

Hi MaryL.A
I'd be very interested in hearing what your Onc says about the Tykerb. My last MUGA scan apparently showed a thickened muscle in the heart so I'm to have the other type of heart scan (some kind of ultrasound - I can't remember what they call it) soon. It's nice to know that if the Herceptin is taking its toll on the heart that there is another option out there. Then again I'm in Canada and we seem to be slower at getting these things than you are in the U.S. Let's keep our fingers crossed that these things are as good as they claim to be!!!!!! Janet

[jubilee]

I have finally come to a site which I appreciate a lot! Keep it up members! am sure am gona njoy!

[Sammy]

Janet, what herbal meds did you try ? Where did you get them from ?


Sammy

[Sammy]

This site has lot of natural healing tips. Thought some of us would like to try them.

http://www.sakthifoundation.org/

[janetcaruso]

Hi Sammy
Sorry for taking so long to respond. It's been a busy couple of weeks. Thanks for the direction to the sakthifoundation site..... it's an interesting read. As far as my "herbal remedies" go, I was doing anything and everything. To start with, a neighbour got a friend's recipe translated from Dutch, I think, and prepared a garlic concentrate....it was something that took a few weeks to prepare in that it would sit for a while then be filtered, sit, then filtered again etc. When taking it, I was to add 1 drop to a glass of spring water 3x/day the first day, 2 drops the second day, increasing by 1 drop a day up to 26 drops/glass & stay on that for X number of days & then decrease back down again; it took about 3 months to finish and apparently once you've done this regime you are not supposed to repeat it for 5 years!! At the same time I was boiling flax seeds in about a cup of water, straining the flax seeds out & drinking the gelatin-like liquid. I also had some kind of liver cleanse (which tasted AWFUL!!) I can't remember what it was called - BileFlux or FluxBile??, but I could hardly stomach it... I think it had black cohosh & dandelion something in it...it was available at a regular health food store as a box of 8 ampules. I soon switched to Milk Thistle as a liver support, which was much easier to take. Next I went to a Chinese Herbalist- I had some accupuncture done and he gave me 2 types of Chinese Medicines - "Paris 7" which contains paris, houttuynia,scutellaria, oldenlandia, isatis leaf, subprostata, & tarazacum
-"Gynostemma" containing gynostemma, astralagus, oldenlandia, lycium fruit, ho-sho-wu, tang-kuei, atractylodes, psoralea, & cuscuta.
That was difficult for me though because you had to take 3 tablets of one 20 min before eating, 3 X /day, and the other was 2 tablets with each meal and before bed and with being so fatigued from the Taxotere, I found i was sleeping in and then only having 2 real meals/day & I wouldn't have time to take one set 20 min before eating so I'd just take them all together while eating , but still wasn't taking what I was supposed to each day.....they lasted a couple of months that way, but I didn't go back for more when they ran out (plus they were quite expensive).
Around that time I had a friend "lend" me an electro-magnetic detoxifying foot bath, which is supposed to rid your body of toxins. Her sister has had fibromyalgia for years and after using this device, she really felt an amazing difference - had more energy for longer periods of time - felt quite "renewed" - so, I started doing those regularly too; why not? It included a liquid vitamin supplement that was to be taken after each "cleanse". The visiting nurse that I had after my lumpectomy (who was the one who recommended the flax seeds & the horrible liver cleanse) also recommended something called Immunocal - I had looked into it on the Internet but hadn't done anything about it. An acquaintance mentioned she was taking this protein drink that was supposed to be really good & a friend of hers distributes it - turned out to be the Canadian arm called Immunotec - the product is called HMS90 & it's a whey protein isolate; so I ordered some of that - took it regularly for a month, then started forgetting, soon the monthly shipments started to pile up, so I have cancelled it for the time being as I have 3 boxes of 30 packets still in my cupboard! Through all this I had read quite a bit about Essiac; my sister had mentioned it to me (she had heard about it through a colleague), & my ex-husband's uncle's 2nd wife, who's also had breast cancer, told me she swears by it; so I had intended to try that too. Before I got around to searching it out, another neighbour/friend said she's been taking it and brought some over for me, so now I'm taking it too. It contains burdock root, sheep sorrel leaves, slippery elm bark and rhubarb root. It's quite an interesting story as it originates from the Aboriginals. So all of these things I've done in the past year while getting my chemo - first Taxotere & Herceptin & now Tamoxifen & Herceptin with Pamidronate for the bones throughout. So what's working???? Who knows??? Who can tell??? Is it all in my mind??? All I know is the liver spots have all but disappeared and if it's working there they say it must be working everywhere. Other than that, no news is good news!!!! I'm basicly at my 1 yr mark, but don't have any scans for another 2 months, so am crossing my fingers that everything continues OK. Best to you, Janet (Hardly a quick reply!)

[Mindyk]

I was told about this site from a friend that I met on the Breast cancer message boards. I will be starting herceptin on Aug 8th.( every 3 weeks for 1 year) I was diagnosed with IDC in February. I just finished 6 treatments of chemo TAC. I am also getting ready to start radiation. I look forward to using this board to help me if I have any questions and to meet people that are going through what I am going through.
Mindy

[lavonnia45]

Thanks Christine for posting this web site. I am just starting the whole process and it is a little scary. I was diag with stage 4 left breast cancer on June 20th 06 on July 17th 06 I had a left breast mastectomy and the cancer has matasized to the lumbar spine. I am starting radiation and chemo this week, then I will have to take Herception when I am done. This web site will help me as I can talk to other women who have been where I am going .

LaVonnia LaGrange
Orlando Florida

[lavonnia45]

I pray to God every day to give me strength and courage to fight this disease and with his help I will do just that.

[Joe]

"I pray to God every day to give me strength and courage to fight this disease and with His help I will do just that."

LaVonna you also have the prayer and support from the entire HER2 Support Group community.

Regards
Joe

[gin-tx]

Your diagnosis sounds quite similar to mine. I had BC 10 yrs ago on left breast with lumpectamy and 36 radiation treatments, in April I was diagnosed again on right side with in situ, had second surgery in May for partial mastectomy, something showed up on bone scan followed by MRI, I also had tumor on lumbar spine. I recently finished 18 radiation treatments as that had to be dealt with first, now doing herceptin with aridia. Only have had 2 treatments, but have another this week. Keep me informed as to your progress. I'm interested and hope you are doing well.
ginkott1@aol.com

[Mary Jo]

Hello,


I am new to the Her2 group. I'm so happy I found you.

My name is Mary Jo and I am 46 years old. I was told on June 24, 2005 that my needle core biopsy showed that I had invasive ductal cancer. I had my right breast removed on July 28, 2005. My cancer was staged as a 2B - 2.5 cm tumor - 1 node with 1 microscopic cell - er/pr neg. and her2neu - grade 3. I started chemo on Aug. 24, 2005. I did the dose dense therapy. First 4 treatments A/C every other week - last 4 treatments Taxol every other week. I started herceptin when the taxol started. I receive my herceptin every 3 weeks. My chemo ended on Nov. 30th but the herceptin continues. That will finish on Oct. 11. I will have completed 1 years worth of herceptin at that time. I also did 6 weeks of rads.

Thankfully, my cancer was confined to my right breast and didn't spread elsewhere in my body - atleast the pet/ct scan showed nothing but a clear body (only cancer showed up in right breast). I had a mamoo of my left breast 6 months after my right breast was removed and there was a questionable area of calcification that they wanted to biopsy. So I had a stereotactic biopsy and thankfully that was benign. However, I decided at that point I wanted that breast removed also. I just didn't feel like waiting around until that area became cancer as well. It was near the chest wall and that scared me. Thankfully after having the breast removed and gone through absolutely no cancer was found. Praise God!

Now, I am learning to live with a cancer diagnosis and get on with my life. I feel great, my hair is back and looks great. I do have aches and pains but from reading the posts that seems to be the "norm" for many of us.

So nice to have a place to come where others are in the same boat.

God Bless all with His peace and contentment as we walk through this life together.

Mary Jo (marejo)

[Christine]

Mary Jo,
Welcome to our group and thank you for sharing your story. Feel free to jump in at any time. This board is a jumping off point for new members to feel comfortable before they move over to the other boards.

Everybody's input is appreciated.

Hugs
Christine

[Johnnag85]

Just found this great site and I am so excited about it. I saw it in CURE. Just wanted to say HI and I cant wait to read everything on here!! Knowledge is power!

Johnna

[gin-tx]

Am so glad you are doing well with your treatment but most definitely get a port. I'm surprised your surgeon or onc did not recommend it. Makes things so much easier. I've had bilateral bc and have a port, then the veins in your arms are reserved for other things like CT, blood tests with a physical, etc.

Am not aware of the Herceptin for life theory but did talk with someone while I was at chemo on Thurs and she said the same thing. If it keeps me alive and works, that's all that matters to me, I can spare one day every three weeks. Yes I'm very tired too and am still working 6 hrs a day. Good luck to you and am so thrilled with your progress. This site is wonderful for us to communicate with others who are going thru the same things we are and understand.
ginkott1@aol.com

[Johnnag85]

yes- I did get a port- thank goodness- one of the best decisions I had made. I highly recommend it also. My veins have never been big, they have to occasionally use a butterfly when they cant access my port- and you hope they arent letting an intern "practice " on you. Yikes!

[deb-steph]

found this site in an issue of cure. it came at a good time as i am now thru with the bulk of treatment and am now on herceptin every 3 weeks until april which will complete a year. i am not sure what is to happen next and i hope some of the people on this site will have some insights to share. as we all are, i am worried about recurrence and mortality. i have 3 children with the youngest in the 5th grade. my oncologist thinks i don't have a lot to worry about but he's not me. i'm a stage IIb with no mets and only one sentinel node with microscopic findings. i seem to be doing well and i am a nurse so i don't always know if what i'm being told is all i need to know. thanks for this site. i have learned a good deal more about her2.

[Mary Jo]

Hi Deb-Steph,


We have an identical diagnosis - or so it seems - I, too, was a 2A or B - they always said I was in a "gray" area - A or B - but not quite sure why. My husband said it had something to do with the shape of my tumor - very wierd shaped I guess. Oh well - I know being a Her2 pos. person puts our cancer in a very agressive catagory. My tumor was also a grade 3 and as many people say in here - there pathology reports said "prognosis poor." They never did tell me that BUT I'm sure mine said that as well.

Like you, I pray for no recurrence but only time will tell. I finished my chemo on Nov. 30th and finished rads on Feb. 7, 2006. My herceptin will be ending Oct. 11 - YIPPEE - I have only 2 more treatments left.

Since chemo though (or maybe it's from the herceptin - I don't know) I am achy a lot of the times and I hate that because often I think "what it" - but my oncologist reassures me that I am "perfect" and I guess I have to trust her.

Take care - and I send a hug to you via the internet.

Your "sister" in the Lord.

Mary Jo (marejo)

[deb-steph]

thank you so much for your response. i read your profile and indeed we seem to have pretty close scenarios. i was a stage IIb because my tumor was 2.1 cm. i too had clear margins. i had a right lumpectomy but because of radiation my right breast is now quite a bit smaller than my left. i appreciate the prayers and i will pray for you also. it is wonderful that we share a common religious belief. i am not sure why i have cancer but i don't dwell on it either. all things will be revealed. good luck on the herceptin. i haven't had many side effects from it so i think that's good. if you find out anything else, let me know. i will go and read you suggestion. thanks.

deb-steph

[Ruth T]

Hi,
I am new to this forum, but have been encouraged by all the support.
I am er, pr-, and had a lumpectomy, mammosite radiation and 1 treatment of taxoterre, cytoxin followed by neulasta.I had a port put in before my first chemo(last Wed.) and my back is hurting really bad when I swallow(drink) and move certain ways. The onc nurse had me go get a chest xray- it appears fine. I'm wondering if the pressure put on my back/lung from the mediport surgery could have been enough to make this kind of pain persist, and/or if the neulasta can aggravate an already sore area. I have other bone pain(i'm assuming from the neulasta) but nothing like this in the back. Anyone have this experience.

[Ruth T]

Hi, I was wondering who the doctor was in Chicago. I live in a suburb here and was wondering about going to one of the Chicago hospitals for second opinions on treatment.
thanks, Ruth

[gin-tx]

Dear Ruth,

I don't know any drs, oncologists or anyone else in Chicago area. I live in Texas. I would tell my drs that I want a second opinion before doing anything major. Drs are always very happy for you to get a second opinion. If you have a medical school with a teaching hospital in the area, that is where I would start. They usually have excellent staff, latest methods, etc.

Keep me informed. And as far as your back pain from port, since it's in your chest I can't imagine it being from port but maybe they had you in a strange position on operating table. Talk with your surgeon.

Good luck and keep me informed.

hugs,
ginkott1@aol.com

[gin-tx]

Dear Janiec,

This is my second episode of BC, first 10 yrs ago! Had lumpectomy followed by 36 radiaiton treatments. Standard treatment at that time. Developed a new problem in April of this yr that I went to gyn about, he sent me to breast surgeon immediately. Biopsy done, he thought everything looked fine, it was malignant. Had sentinel node, partial mastectomy and first lymph node removed was malignant. After visiting 3 oncologists before making a decision, the dr I'm using is presently using only Herceptin and Aridia for my bones. Let me add on my bone scan they found a spot that looked suspicious, had MRI that revealed a tumor on thorastic spine, so had to deal with that first, had 18 radiation treatments on spine and lungs. So far the Herceptin is working I imagine, I see onc on Fri for 5th treatment. He said he will continue with this course of treatment unless something changes with blood work. I see you live in Austin, I also live in TX, I know Austin has wonderful drs.

Good luck to you and keep me informed as to how you are handling all of this. These decisions are not easy. Lots of pressure to be sure it is the right one.
hugs,

ginkott1@aol.com

[gin-tx]

Dear Ruth,

I don't now anything about the back pain from the port. And since I have not been on Neulasta I don't know a lot about it. I had a wonderful brochure that one of the oncologists I visited gave me about the drug, side effects, etc. I still have it, if you want name of it to ask your oncologist or nurse for a copy, let me know. I had a whole stack of pamphlets about chemo, different treatments, etc.

I think it's interesting you are getting Herceptin weekly if I'm correct, mine is every 3 weeks. I'm going to ask my onc on Fri why some people get it more than one a week or weekly. And since I was Stage IV metastatic, I would think my dr would have given it to me more frequently.

Hope your pain is getting better, and that you are feeling better. As far as short term treatment on Herceptin, I don't know anything about that either but if I learn something I will let you know. Please keep in touch.

ginkott1@aol.com

[Johnnag85]

I also got Herceptin 1x per week, I was told that pre-menstral women under the age of around 40 did better on smaller doses of Herceptin, more often and that was the reason behind it. I also received Taxol 1x per wk, for 12 wks, due to the same reasoning.

I was given Neulasta 3 x's per wk--had taxol on Mon., then went in Tues, Wed and Thurs. for neulasta shots. It made me feel like I had flu symptoms- achy all over, my body felt black and blue, I would start to feel better Friday evening, have 2 pretty good days on Sat and Sun., then start the whole thing over on Monday.

Johnna
[

[Heidi Bibber]

Being a new patient I was glad to find your group in my frantic search for some positive news about hormone negative, HER2 positive tumors. I am two weeks past a mastectomy and due for my first PET Scan tomorrow. Reading your postings gives me hope that it is not quite time for Hospice yet; and I am bracing myself for the treatments which will start the end of next week. Thanks to all of you for sharing your experiences and helping new patients, like myself, to start coping with our feelings of devastation.
Heidi
Manassas, VA

[Ruth T]

Gin-tx,
Thank you my back pain is much better. Sorry to say I have not had the great experience most have with their ports. Last week I found out I have a blood clot from it and had to get the shots in my stomach and take daily coumadin. My surgeon hopes it will resolve itself and the underarm pain, etc will go and I will finally be glad to have the port for the long run. Over the last few weeks I have just wanted it out! Did you ask your onc about the weekly herceptin?
Ruth

[gin-tx]

Dear Heidi,

I'm surprised you are starting treatment so soon after mastectomy. What kind of treatment are they doing. I'm sure not radiation. It takes at least a month to be healed before you can start it. When I had first BC 10 yrs ago, it seems like it was 4 weeks before they could begin radiation, thought I would never get the drain removed.

The with this second diag 10 yrs later, it's totally different, Her2 Metastatic Grade IV. Lot worse than before and on other side. I'm doing Herceptin with Aridia, went to 3 onc before I settled on one I love. He's young, kind, has a personality and very easy to talk with. I feel I made a good choice.

Keep me informed of your progress and what they are doing as far as your treatment. I feel the biggest boost is to communicate, don't let them intimidate you, ask all the questions you want and take notes. You won't remember everything when you leave their offices, take someone with you. I'm divorced so my son who is married and lives here goes with me, he talks with dr, then gets me set up in infusion lab, gets me a diet coke and lunch if I'm hungry and leaves. If I was not feeling that I could drive afterwards, he would come pick me up and have his wife drive his car back to my house to get me. He's been a real lifesaver, my daughter does not live in the city but 3,000 miles away, is also married with family. If you feel you need to talk send me your phone no. I work part time, am unable to work full time, all 3 drs say no to 8 hrs a day, am working 6, just barely, trying to hang onto my benefits.

hugs

ginkott1@aol.com

[Heidi Bibber]

Dear gin-tex,
Thanks for your reply. No, I will not have radiation first but will start with chemo. I have systemic lupus as well as myasthenia gravis and have been taking prednisone and cellcept (an immune suppressant) for many, many years. The radiation oncologist I consulted determined that I am not a good candidate. Apparently radiation can be pretty devastating for the skin of patients with some autoimmune diseases like lupus or scleroderma. Since I had a mastectomy, the surgeon agreed; and I hope they are right. Many of you seem so brave and pro-active while I am still at the stage where my emotions are like a not so fun roller coaster ride. Reading your postings gives me courage that I too will still have good productive time; and that I will wake up in the mornings not feeling that I am waking to a nightmare. Although I am still quite sore from the surgery I am almost glad that treatments will start soon so that I can go on with working toward getting better. Again, thanks for all your encouragement.
Heidi

P.S.: I am still trying to find my way around this site since I am not at all computer savvy. I hope I am doing the postings correctly.

[gin-tx]

Dear Heidi,

Glad you have found good docs who understand all your other health issues you are dealing with. I hope your treatment is successful. Have they told you what you will be getting as far as chemo drugs.

I too thank the Good Lord for each day that I have. I am having a CT on Fri to determine if the tumor on my spine has gone away for good. Am having some pain so am fearful it may have returned.

I think this site is to wonderful to give support to those of us who definitely need it. The emotional stage is very normal. I went to my surgeon a couple of weeks after surgery, told him I cry at everything and could not sleep at night. Would lie awake most of the night. He gave me some antidepressants that helped tremendously. Still having trouble sleeping a lot of nights, my onc wanted to give me sleeping pills, I refused, think I'm going to ask for them next week.

Good luck with all your treatment and keep me informed as to your progress. And don't be shy about asking even something that you think is mundane, in our state it's worse to worry about something than have it clarified.

hugs,

ginkott1@aol.com

[Rita]

Hello.

I am new to this page and hope I'm doing all things on this computer correctly.

I was diagnosed with stage IV breast cancer in May of this year (lumpectomy, taxol and herceptin treatments). I am 53 years old and figured I was almost done going thru menopause. My cancer had affected 25 out of 29 of the removed lymp nodes and there were several small tumors in the front and tops of my left lung. After 8 taxol treatments the tmors were gone from the scans and my onc-doc has me on weekly treatments of herceptin only. He says that the herceptin will probably be my life-time treatment. From what I've been reading that seems to be the current thing with some doctors.

I realize that all of us currently on herceptin are making the statistics as we go along but I have some questions. hot flashes are poping back into my life again. Has anyone elese had this happen? And low blood pressure readings; again has anyone else noticed this?? I completed my last (hopefully) taxol treatment on the second week of August. I have another CT scan set for later this month to check everything out.

Good wishes to everyone else out there.

[Johnnag85]

Hello Rita,
Hope you are doing well today. Welcome- I am new also, it is a very informative helpful site.
I was diagnosed last summer, with stage 3, Her2 positive3, at age 38, after 2 months odf chemo, I stopped having my periods and a year later, think I might not get them back, I have been going through all of the menapause stuff with hotflashes also. After my Taxol was finished and Herceptin was stopped early the hotflashes have tapered off, but I still have not regained my period, so no one knows if I will or not. One less thing to worry about, at least!

I also had very low blood pressure, malways have had- but during and after chemo I have kept it. I am always cold! when I am not burning up!

a new adventure everyday, huh? Ya think you know your body and how it is going to work and respond to everything till this comes along and you dont remember your own cell number...of course, it was probably like that before!

Take care, hang in there, all the best
Johnna
OH

[lindyjo]

Hello Everyone,
I was so glad to find this website. I stumbled on it by a link on another website. I have been trying to find other Her-2 positive B.C. patients and had only been in touch with one other person so far! I was diagnosed with Stage IIIb, Her-2+ breast cancer in March on the left breast, just 7 months after having a needle biopsy(on the same side) which they told me was just fiber cystic tissue. I found a big lump in my armpit that made me go back in. My surgeon told me had I waited the full year to go back for a mammogram it would probably have been too late. I had 7 of 13 positive nodes. I had 12 rounds of chemo. 6 of A.C. and 6 Taxol. They started the Herceptin when I started the Taxol and I will continue on that until next July. I have had 5 of 33 radiation treatments. My biggest frustration through all of this is that I see on this and other website boards that other B.C. patients have had follow up scans and tests after treatment and my oncologist is telling me they would only do a CAT scan or MRI if I was having symptoms. I don't understand why there isn't more follow up tests after treatment. I don't want to wait until I have symptoms! I'd like some reassurance along the way. I'm getting long winded here and I will hush for now, but hope to be in contact with many of you ladies for support, hope, venting etc. Thanks,

[Patricia Williams]

My name is Patricia Williams, 65yo,dx with Breast Cancer end of July, 2006...Bil Mastectomy on 8/28/06, Stg I, clear margins, sentinel node biopsy neg; however, I was Her2neu+, ER+,PR-...I take Arimidex daily (5yrs) along with IV Herceptin weekly for 6 mos, if echocardiograms are normal at 3 and 6 mos, then I will have the option of continuing for the remainder of the year.. I was told that my risk of recurrence is 25-30% and adding chemotherapy to the treatment does not decrease the odds significantly, the side effects alone are difficult for most people; however, taking Arimidex decreases my risk in half....adding Herceptin to the mix may gain me some advantage, but I don't believe the medical community really knows. I am under the impression there are not that many ongoing trials utilizing Herceptin without Chemotherapy...Does anyone know if there are and where?

Thank you for allowing me to be a part of this group. Pat

[rhondat123]

august2006 have idc stage1 exbiopsy lumpectomy 2 node removal allmargins and nodes clear in path report found vessel with a few cell not sure if its invasion markers are normal ct normal bone scan shows something on rib under effected breast oncologist says its arthritus but ordered mri to be sure so now i am scared to death about that but surely if he thought it was mets he would have said so i have to take 4xacfor three months then3mths weekly taxol and herceptin and finish year with weekly herceptin and rads then off to tamox what are my chances is this to much am i going to be deathly sick i am 34 mother of 2 worked for the post office 8 years but not yet full time in line for next route but will probably be replaced because i have no benefits yet alot of work for nothing pls reply very scared about being sick watched new lifetime movie and it scared me i start my port and chemo nov1 thinking about shaving my head this week when i get my new wig i have never been sick before my docs say im so lucky but somehow right now it seems overwhelming when i feel fine and know im going to take something lethal i hope my mri turns out fine my tumor was1.7cm my doc says this is all precautionary i hope so

[Patricia Williams]

10/24 I just want to give you some words of encouragement...Having BC is very scary and difficult each and every day. I elected to have a bil mastectomy even with early stg disease and aggressive tumors due to my history of a previous biopsy and several Ultrasound follow ups to Mammograms over the years. I was Her2neu+ and am only taking IV Herceptin and the oral drug Arimidex. I am 65 and the oncologist thought that the chemo component would be too hard on me and the benefit of taking both was not that great to put up with the side effects. Hence, I am taking this route without chemotherapy. It may be a mistake, but it is a decision I will have to learn to live with. I did get a second opinion which pretty much said the same thing. If I were 10-20 yrs younger, I would be given the chemo with everything else. Perhaps he figures I don't have that many years on this earth and believes that people need to get on with their lives. He stated over and over that the quality of your life is more important than quantity. I wish you the best Rhonda...I will say a prayer that your MRI will be clear and you will get on with your treatment knowing that you will have a good outcome. There are many others out there who have gone through extensive chemotherapy, lost their hair, gone through fatigue, etc etc and are still going strong enjoying life. This is not to say you won't have bad days but you have to stay positive and strong..just read these postings on this site...utilize all of us to help you through this..You will persevere...Pat Williams

[gin-tx]

Dear Patricia,

I too am about your age and was diagnosed in April 2006, this is my second episode of BC, First 10 yrs ago, am receiving Herceptin and Aridia, no other chemo at this time but it things could change. Had seen two previous oncologists who were going to do heavy duty chemo, then radiation and Herceptin for 1 yr. But that was before a tumor was detected on my spine that was malignant. Went to third oncologist who said this had to be addressed first, had 18 radiation treatments and also started Herceptin w/Aridia. Taking Famora daily (orally). So far am doing okay, having lots of back pain. Am to see a specialist next week. Please keep me informed, we're all in this situation together.

hugs,
ginkott1@aol.com

[VirginiaGirl]

Hi All! I'm new to this forum and to message board stuff so I apologize if I do something weird! Not new to cancer, unfortunately. Initial dx in March 05, but just dx in July w/ mets to bones & chest lymph nodes, starting to experience some intermittent bone pain but manageable. I too was afraid of the lethality of standard chemo so I chose an alternative chemo. Will never know if I made a good or bad decision, seemed completely right at the time. I just have to move forward. It is definitely weird to be so "sick" and feel so normal! I'm going for 3rd round of Herceptin tomorrow, so far I have tolerated it very well. I'm also very relieved to have oophorectomy behind me as of mid-Oct. Was afraid of instant menopause and turning into the bride of frankenstein, but so far I've had little difficulty, just some mild hot flashes. Managing my fears for myself and my family through all of this has been the most difficult part. Thanks to all of you for the support and information I've received just by reading your postings to each other!

[Ruth T]

Hi Liz,
I too am glad for the information and support we can find from each other. I was wondering what the alternative chemo was that you had? I know how you feel about decisions we need to make. I am getting my 4th and last round of taxotere, cytoxan this week, and I still hear so many are getting so much more chemo so I am wondering if mine will be enough.We make the decisions and move on though right? Best wishes- Ruth T

[gin-tx]

Dear Liz,

I don't know what kind of other chemo that you received. I did not receive the real strong drugs which I was scheduled to get but when a tumor was discovered on my spine and it was malignant, it changed the treatment plan. I saw a radiaiton oncologist one week and began 18 treatments that I was told would make the tumor disappear, it has not, shrunk it some. And the next week had port installed and began herceptin and aridia. So far doing okay. Still have lots of back pain, saw a spine specialist, will have another MRI. It seems like it never ends. This is also my second episode of bc, first was 10 yrs ago. Had lumpectamy followed by 33 or 36 radiaiton treatments but this new tumor is much more aggressive.

I hope you continue to do well and keep me informed. I think this site is so amazing to give support to each of us who desperately need it and find out how others are doing.

hugs,

ginkott1@aol.com

[Patricia Williams]

I was dx in July 06....I am 65yo, stg I, clear sentinel node, margins clear, ER+,Her2neu 3+ ...I opted for a bil mastectomy and take Arimidex in addition to Herceptin weekly. I opted out of chemo as the % of benefit was small in comparison to the risk/side effects. It is a difficult decision and I often wonder if I made the right decision...Overall, I guess I have relatively few side effects; however, seem to have aches, pains, some flu like symptoms and minor headaches through my eyes...rather annoying. On two occasions I had significant stomach distress/pain after Herceptin loading dose and after the third dose...why not on the second I don't know. I take 20mgPrednisone with 150mgZantac and 2 xtra str Tylenol two hours before Herceptin treatment and 2 hours after. I sometimes think the Prednisone is too strong and causes significant stomach distress even with the Zantac several hours later. The oncologist doesn't know why I have some effects when others have none. We are all individuals and react differently to medications....

Best wishes and prayers to all who struggle with this diagnosis and treatments.....Pat Williams

[janet/FL]

My understanding is that if you are just taking Herceptin, you should not need the prednisone. I only took Benedryl and Tylenol on the first dose, then, since I had no reaction I took none the rest of the time. I took a steriod before Taxotere, but since you are not on any chemo, unless I missed something, ask your doctor about taking you off prednisone.
You should do fine.
Janet

[Patricia Williams]

Janet: THank you for your reply....I will s/w the oncologist and ask if I can take the Herceptin without the Prednisone and see if it makes a difference...also do you have a special diet you adhere to following treatments....???? You must be doing just fine with this treatment....I hope I can get to that point...The Arimidex can cause some problems such as joint pains, etc....It is hard to know what is causing what...but thank you for taking the time to respond....Pat Williams

[gin-tx]

Dear Pat,

I am about the same age you are, in fact a couple of yrs older. I am surprised at the Pretisone. Do you take it just days you have treatment or all the time. I only take 2 tylenol and Benadryl before Herceptin treatment as I had terrible chills. I was diagnosed with Stage IV, metastatic cancer. Don't think it's reverted up to now. Will know more after the MRI is done hopefully this week or next.

How often do you get Herceptin, did they do a heart test called a Muga before they started your Herceptin. if not they should have. My onc called my heart specialist and told them they 'HAD TO WORK ME IN SOMEWHERE, JUST GET ME IN THAT DAY' when I called and said they would not do the test after I went there specifically for that purpose. Sometimes I don't think these gals listen when you call for an appt.

good luck and keep in touch and let me know how you are doing. I'll be gone over Thanksgiving to CA to see my daughter, in fact my son, his wife and their daughter are all going. It should be fun, I hope I feel okay. I take a pain med and a sleeping pill every night before going to bed because of pain in back, arm, shoulder. Only when I lie down the back pain is all the time but can't work and take it during the day or drive. This is a horrible disease and I hope I come out of it okay. I'm so sick of drs. Hope it gets better for you and me.

hugs,

ginkott1@aol.com

[VirginiaGirl]

The alternative chemo I did is called insulin potentiation therapy (IPT), you can google it, started in Mexico 70 yrs ago, more doctors in US being trained. The idea is that the cancer cells are glucose-hungry and have many more insulin receptors than regular cells, so the tx uses insulin (dr carefully monitors blood sugar levels) to open up the cancer cells and can use significantly lower amounts of traditional chemo drugs (I got CMF) so that normal cells are not damaged. I think I explained this correctly. I was never sick, and actually felt better than ever coz I also got a vitamin IV. My onc now and my other traditional docs basically see it as no chemo at all. When I see everyone's postings about all the chemo treatments and still the recurrences it makes me wonder, too. Scary thing too is all the tests I had in July for mets, the bone scan showed absolutely nothing wrong, when all other tests showed multiple spots in my bones!

About the pre-meds for herceptin, I also just get tylenol and benadryl, they actually cut the benadryl in half for me today coz it made me so very sleepy, and I did fine w/the half dose. No flu symptoms. I did get flu symptoms, achiness mostly, the day after I got the Zometa. I also wonder if the herceptin every 3 weeks is enuf, I see so many of you getting it weekly. What is aridia, don't think I've heard of it.

God bless!

[tweet7805]

I have been on herceptin since March 29th of this year and just ran across your site. I am so glad to find out additional information on treatments and side effects. I have stage IIa, grade 3, ER/PR -; Her2 +++. I had a lumpectomy Nov 22,05.Completed 4 AC treatments; 3 of Taxol; 8 or Taxotere wkly with herceptin. Then Herceptin every 3 wks since July to complete March 2007. My main problem is extreme fatique, chemo brain, nerve damage to feet and hands and now joint pain. Can you tell me if these are due to Herceptin or still suffering from chemo side effects? If so any idea when they will go away so I can look for work. I was laid off while I on disability.

Thank you.
Cindy

[tousled1]

Cindy,

Lots of us women have the same side effects and some of us have worse with the Herceptin. Here is a link to a long thread on Herceptin side effects.

http://www.her2support.org/vbulletin/images/misc/subscribed.gif Please post your two cents on Herceptin "side effects" real or perceived! (http://www.her2support.org/vbulletin/showthread.php?t=23696&highlight=herceptin+side+effects)

[VirginiaGirl]

Kate, Thanks for the link. It was very helpful. I've only had 3 herceptin tx, but now realize some of the things I've been experiencing, tho mild and not really problematic, are probably due to the herceptin. I plan to keep better track of any symptoms so I can inform my onc & post to the thread.

[lili7]

Anybody has problems with fingernails and toe nails after chemo and 3 months on herceptin? Is it the Herceptin or the chemo?
Any one else? Please reply !
Thank you
Any advice? Already lost 2 of my toe nails and seems to spread rather quickly!

[lindyjo]

lili7,
I lost 5 toenails. It started towards the end of my 4 cycles of A/C. I lost my big toenails first. My onc sent me to a foot Dr. to make sure they weren't infected. They weren't. The foot Dr. cut them back, which I thought would hurt, but it really didn't. She had me use a Rx. nail fungus varnish(Penlac) for a month to kind of seal the area and prevent fungal growth until it dried up. They oozed for a couple months. When I lost the others, I used a clean clipper to trim back the loose parts myself (to save $ on Dr. visits) and dabbed them with hydrogen peroxide to keep them clean. Even tho' its kind of gross, it's best NOT to cover them with bandaids. Keep cutting back loose and dried areas with a clipper wiped down with alcohol and keep them very clean. I guess it takes about a year for the lost ones to grow back. As for fingernails, during my A/C, I grew beautiful long nails. I had NEVER had them that long. But then with the Taxol, they discolored a bit and all tore & broke off. I'm done with chemo now but still on herceptin and they are dry & brittle and chip & split, so I suppose it could be from the herceptin. Hope this helps. Good luck. Lindyjo

[shaza]

hi everyone ,im so pleased ive come across this site ,although sad i needed to find it ,but i understand we are all in the same boat here . im still going through a bit of devastation since my recent recurrance and im afraid here in the uk we dont seem as clued up on all the issues as you are elsewhere in the world ,but heres whats happening to me now .
3 years ago i was diagnosed with DCIS , had wide local excision surgery ,lymph nodes removed ,i had clear margins,no node involvement and not hormone dependent ,so treatment consisted on surgery followed by 3 weeks radiation, about 4 monthd ago after suffering from vague symptoms which i could not pinpoint ,mainly tiredness ,i was sent for a liver scan after bloods showed slightly elevated enzymes, i was then told i had secondaries in almost my entire right lobe .a body scan was done which showed no other mets, i was started straight away on FEC chemo and wasnt given much hope at that time .ive now just had my 4th chemo and my tumour markers have halved which my onc says shows im responding well to treatment ,and she is pleased with the results ,liver function is ok as well ,my her test results have just come back ,showing i am her2+,so my onc says i will have herceptin ,she needs to decide on the timing ,as im responding so well to chemo ,im to have another body scan after my 6th chemo for measurements etc,then she is gonna see how i get on . i love to hear from anyone whos is a similar situation or can give me more info about mets to the liver . thank you all so much ,i feel i need information and support .
lol
sharon from the uk

[gin-tx]

Dear Virginia,

Your type of treatment you are receiving is very interesting. I have not heard of it before. Where are you getting this done, do doctors in the US do this type of treatment. I'm still getting Herceptin and Aridia. Aridia is for treating the bones, my onc took me off the ostoperosis drug I was on and substituted this, which is very very expensive. If I did not work and had insurance I could not afford it. I pay $80 for a 3 month supply through my company's mail order pharmacy and the cash price is $802! My company is changing mail order pharmacies in January so don't know what my meds will run, I have several things filled thru mail order because of price and I can get 90 day supply rather than running constantly to pharmacy every 30 days. I certainly hope this treatment continues to work for you. I already have cancer of the bone which I had radiation treatments for a spot on my spine (18 of them) and now have more problems. The spine dr I saw wants to do surgery which is a big deal but I'm resisting for as long as I can. Cannot handle another procedure right now. Good luck to you and keep in touch and let me know how you are progressing. Have had trouble with the web site so could not reply to anything, finally got it worked out yesterday.

hugs,

ginkott1@aol.com

[VirginiaGirl]

Dear Gin-Tx - I also found the IPT very interesting, although I am not doing that now. I tried it, along with mistletoe injections, last year after initial dx. This year w/ mets dx I am trying conventional tx. I've been doing hormonal therapy & herceptin but PET/CT last week showed I haven't responded at all & mets have continued so today I'll get my first dose of Taxotere in combo w/ Herceptin. I'm nervous about side effects, but thousands of women get through it so I know I will, too. I also have much better insurance this year, which is a huge stress relief. Last year my insurance only covered one onc in my area, who I of course didn't like much. The IPT is a lot cheaper since uses only about 10% of standard chemo drug. I had to pay out of pocket for it, insurance wouldn't cover it, had to ask my father-in-law for $$ to pay it, which God bless him, he was happy to help. Anyway, there are probably about 150 +/- docs in US trained to do IPT, several in Arizona, I went to Pennsylvania. A co-worker who had recurrence of colon cancer last year also went to see the PA doc for IPT, and so far so good for her! Take care!

[VirginiaGirl]

Dear Shaza, it's been a few weeks since you wrote about your liver mets. Did you discover any helpful info? I don't have any experience to share with that, unfortunately. My most recent test showed one spot in my liver, which kinda freaked me out, but my onc said we'd just monitor. I've seen in this forum several women who have had liver mets and are now NED (no evidence of disease) so that gives us all some hope! Stay in touch!

Peace

[shaza]

hi liz
well im doing ok with chemo at the moment ,2 more to get ,one tomorrow then last one on 21 dec, i do seem to be responding well to it but will no more when ive had a scan done after last chemo . my bloods have eventually come back showing im her2+ which means i can have herceptin to ,yes it is encouraging that some women come back with ned in their liver ,i was given so little hope at the beginning and i was frightened to allow myself any ,but seeing as im responding so well to chemo i am allowing myself hope now , after first 2 chemos my tumour markers went from 1000 down to 400 ,and my onc was very pleased with that more than shed hoped for ,although it ll be more the scan that shows just what improvements have be made through the chemo ,when exactly ill begin on herceptin ,im not sure as shes happy to see how far i progress with chemo. before starting the herceptin. im more positive than i was and am coping much better than i did when first diagnosed,which i did take so devastatingly bad, just such a huge shock . thanks for replying , please keep in touch
love

sharon

[cafe1084]

Unfortunately, new here. Well, technically new...been lurking about for the past 5 months trying to learn as much as I can from all of your collective experiences to cope with the fight I have on my hands. I decided to finally post because I logged on this evening and read that Hope had passed away. I have never met or even "spoke" with her, but I suppose it was a reality check. I guess her death was expected, but there is a brief period between life and death that we all struggle with. I think it is the fear of the unknown and the fear of what is to come...and a fear of life without them. It's the time when you can only hope there is peace and closure and the words that have never been said are shared.

I truly feel a deep down pain for her family and friends. I have been on that end of cancer. Losing my dad and my best friend, my grandmother, to lung cancer...I know what it is to struggle for each breath and suffer with the knots in your heart. There is no way to describe that pain, right?

I read another post about this being a bad time of year to be sad. For me, holiday season has triggered a personality disorder lol...attempting to carry on as I would with shopping, baking, and tree trimming with my sons, ages 14, 12, and 8, while losing my hair, feeling as though I'm dragging a boulder behind me, fighting with my constipation demon, and suffering sea sickness on dry land. I've put on a good show, but there are times like this evening, after having an e-bay bidding war for a rookie card my son desperately "needs", when all gets quiet and I am alone that I remember that I have cancer, no breasts, and who will love my kids like I do if I'm not here to do it....you know the routine....snowball effect! I'll make it through Christmas. Funny how cancer opens your eyes to life. I no longer need that new sweater or need to finish that laundry before we watch our cartoons. I need those bedtime kisses and little moments I may not have remembered being half as sweet as they truly are.

[cafe1084]

Anyway, a friend sent this to me after my dad passed and I wanted to share it with someone, anyone who might appreciate it, especially during this time of the year.
Merry Christmas, Dad
Merry Christmas, Hope

All is Well. Death is nothing at all. I have only slipped away into the next room. I am I, and you are you. Whatever we were to each other, that we still are. Call me by my old familiar name, speak to me in the easy way which you always used. Put no difference in your tone, wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Pray, smile, think of me, pray for me. Let my name be ever the household word that it always was, let it be spoken without effect without the trace of a shadow on it. Life means all that it ever meant. It is the same as it ever was; there is unbroken continuity. Why should I be out of mind because I am out of sight? I am waiting for you, for an interval, somewhere very near, just round the corner. All is well.

Henry Scott Holland
1847-1918
Canon of ffice:smarttags" />St. Paul</B></ST1:place>'s Cathedral</FONT>

[tousled1]

Cafe1084,

You may want to copy and paste your posting to the HER2 board in the thread about Hope's passing. I'm sure someone will be printing off all the condolences for Hope's family to have. I believe that her family would really appreciate it. If you don't know how to cut and paste it, let me know and I will do it for you.

[gin-tx]

I am just now getting around to some of my messages, and every time I read of someone who has not survived BC it really upsets me. I am dealing with this horrible disease for the 2nd time, this time much more aggressive, but am not quite as sick as you describe in your post. I hope you made it through the holidays with some symptom free days to enjoy your family, etc. I am getting a different type of treatment, herceptin & aridia, so at this point still have my hair and the wig I purchased is sitting in a box in reserve for when I may need it. Yes the uncertainty of all of this is overwhelming, both for the person going thru it and their family. I try to manage as best I can each day with a smile on my face and not complain too much. I save that for the onc and his nurse. My biggest problem right now is the pain I have from the tumor that was treated on my spine and the effects of the radiation. I don't think the pain will ever go away. I hope this finds you doing better and please keep in touch and let me know how you are doing.

hugs,

ginkott1@aol.com

[Susan McQ]

Wow this is great. I came across this site from another BC site. I had no idea it even existed. I wish I had found it months ago when I had no idea what being her2+ meant. I've been wandering around reading a lot of the information posted here.

Susan

[Hazel Joyce]

Hi, everyone! I'm glad that I found you! Thanks for being here. My lump was found on a routine mammogram 11/06. I had a lumpectomy and lymph node dissection on 12-20-06. Biopsy results were invasive ductal carcinoma, 3 cm mass, ER/PR -, HER2 +, 8/10 lymph nodes +. I will be meeting a team of breast cancer specialists on 1-11-07 to hear treatment options. I'm not looking forward to any of it. I'm terrified of chemo. I'm interested in hearing from board members if you were able to work during chemo or not. I am a nurse and I guess it's crazy for me to be around sick people during treatment. Will the doctors be able to tell me when my counts will be down and when I'll feel awful?

[Mary Jo]

Welcome to "our world" Hazel Joyce............It's not a world we choose but was choosen for us for whatever reason. A lot is learned while walking down this road and most of it is all good.

Now to answer your question................I did work through chemo. During most of it anyway. While on the A/C regimen (adriamycin/cytoxin) I took off the Thurs and Fri. after chemo (had 8 cycles of chemo every other week on a Wed.) For the most part I handled it pretty well. I remember one chemo cycle I took off a few more days because I was really exhausted. I never got sick during chemo - either from the chemo or from a virus and for that I was extremely thankful.

I pray your chemo journey is smooth and I pray your body will be protected from the effects of chemo but that the chemo would do what it is suppose to do.

God Bless you with His peace,

Mary Jo

[cafe1084]

Hi Hazeljoyce,

I truly hate it for you that you have to be here, but i am glad you found this place. Tons of good advice and a wealth of information from "experience-educated experts"! I am also a nurse and am having my last adriamycin/cytoxan treatment on 1-08. I worked through the 3 weeks following my first treatment. I would have continued had I been physically able to tolerate the work demands. You're right, it doesn't make alot of sense to be around sick people when you're having chemo, but sometimes it is unavoidable. I figured my kids were germier than most of the patients I was caring for :P I wore a mask when i was within 3 feet of a patient with cough/cold/flu/anything infectious or when you are in a larger group of people where infections may be easier to contract. Religious handwashing and use of gloves, extra care with sharps, and a good hand sanitizer with a moisturizer are your best defense. The doc should give you a book or talk to you about precautions to protect yourself and if you can and want to work, they can all be incorporated into your duties. It never hurts if you have supportive co-workers and a supervisor who will tweak assignments to allow you to care for the less "risky" patients or those who require less complicated care on the days you're really tired.

As far as your counts, the meds have what they call the nadir, or the point when it's expected your blood counts will drop....with adriamycin, it is at the 10-14 day point after a treatment. The nadir is different with each med, though. They will check your counts weekly while on chemo so to stay right on top of them. They can give you meds to help you produce wbc's and rbc's if needed. Luckily, so far, mine have stayed at least low normal, except for a couple of the lesser rbc components, and mine always dropped before day number 7...weird

As for feeling awful, alot of women here say days 3 and 4 were the worst for them, but it is different with everyone. My first treatment was like having the flu for 12 hours the same night as my treatment, a little "morning sickness" for a few days, then I was good to go. With my 2nd and 3rd treatments, I was feeling really bad the night of my treatment and it didn't let up until around day 5. There is really no way to predict when and how bad you will feel. I have learned that an experienced oncology nurse knows alot of the answers and will take the time to talk to me, so I call her with any questions I have....I wanna be like her when i grow up!

Chemo is terrifying and I still feel the urge to bolt as I walk toward the door for my tx's, and I force tears back when they start the drip because I know it'll be a few days of hell for me, BUT these temporary inconveniences are worth the potential pay-off...a long, happy life with my sons. Find your positive and rely on that to get you through when the light seems the dimmest.

I know this is a long post, so I will end by saying that I will be thinking about you and hopefully something here helps....you're gonna deal great! On the not so great days, come visit this site....lots of support and concern built these pages. Please keep in touch!

Steph

[shaza]

im sharon from the uk .
ive just finished chemo for liver mets , i think after the 3rd one i began feeling more tired but still had days i couldve worked ,i never caught any infection so i think i was lucky and never needed any help with low wbc either . i think everyones side effects are different ,i seemed to have worse than anything ,really bad indigestion ,sore eyes ,runny nose and constipation ,i never suffered sickness although was on anti sickness meds . so all in all it was an uneventful journey in that respect . of course chemo frightened me and it still does . when my liver mets were found they were very advanced (even though a month earlier i had clear mammogram and was put onto yearly review for my original diagnosis of DCIS,3 years ago which i had wide local excision,no node involvement and not hormone dependent and recieved radiotherapy) on finding the advanced liver mets i was then tested and told i was her2+. i have responed well to chemo but am not NED as yet , i have a scan next week to see how far the mets have shrunk ,then my onc would rather leave me to see how i go ,with a view to further chemo plus herceptin when she feels the time is right . im sorry you needed to find this group ,and i wish you well for your upcoming chemo , is a scarey time for us all on here hazel but im sure i speak for everyone when i say we are all with you .
love
sharon from uk

[Hazel Joyce]

I'm feeling a lot less frightened since I've read your replies. I guess I'll start figuring out the logistics of a medical leave from work. I'll be meeting with the doctors on Thursday.

Thanks again!

[lou lou]

Hi all, this is brand new to me although I have been battling metastatic breast cancer for years! I am glad to have finally found a Her-2 site! I have been cancer free since 2000 but recently had a reoccurance last Feb. I am now in a clinical trial which involves chemo + Herceptin. After my 3 mo. restage, I found out its working! I want everyone out there to know, no matter what it takes, whatever you have to do....never give up! No matter how difficult the side effects can be! My first diagnosis was in 1993, so it's been a long haul, but well worth it!!! You can do it too!!! I hope I'm doing this right, I've never been on a web group before... take care

[gin-tx]

Dear Susan,

Sorry it took so long to reply, busy at wk and holidays. What other web site have you been on for BC? I accidentally found this one. This is my second episode of Bc, other 11 yrs ago! Am doing pretty good, still do Herceptin/Aridia every 3 weeks, don't know when it will end. Thought I might need to cancel this week because I've had stomach flu, sore throat, etc. for 3 weeks but hated to get off schedule and I am better.

Hope this finds you doing well, please let me know. I communicate with so many people who are young and hate this disease is so widespread. Glad your lumpectamy came out well.

Hugs,

ginkott1@aol.com

[carolm]

Hello Christine
I am new to this sight as you probably already know , How do i enter my profile and picture on this sight please ? i have searched and i am unable to do this . Could you please advise me . Regards carolm

[LindaC]

I Just wanted to say Thank You for the site.I found it very helpful.I have
breast, lymph node was supposed to have surgury Dec1,2006,was cancelleled due to kidney failure.This caused my cancer to spread to bones and liver.I was told that I have stage 4 her2 positive.being treated with taxol,herceptin and zometa.There will be no surgury.The treatments have helped.
Your webesite has helped me a great deal.
LindaC

[Sheila in Salvador]

Hi, Hazel Joyce--hope you are doing well. I was diagnosed in May 2005 while teaching down here in El Salvador and underwent a double mastectomy here the first day of June. Upon returning to Colorado for the summer, I began the usual chemo cocktail of AC and Doxyrubin (I think that's the name?) for 8 weeks followed by Taxol for another 8 and then radiation. I was really proud of myself for not missing a day of school through all that, but it was because of a great class schedule arranged especially for me by my school! A year ago March, I began what was supposed to be a year of Herceptin, but unfortunately had to stop after my last treatment in December due to a significant decrease in heart function and mild congestive heart failure. My most recent heart test has shown improvement--slowly but surely!!! Good luck in your fight. I feel truly blessed with all the wonderful angels that I have met in this journey and pray that you, too, will be surrounded with angels who help you through all this. I'll be interested in hearing how you are doing! God bless you!
Sheila

[Tigerlily]

Hi from Australia. My name is Kim. This is the first time I have ever written on the web.

This support group is a godsend. I have a lot of side effects I feel my onc. brushed off - esp diminshed concentration, crusty nose, nails and hair affects, breathyness, hip pain, nech pain and tiredness. He feels my immune system is just reacting. Nothing more scary could be under the surface to due the how good herceptin is for my situation. You are encouraged to report aches and pains - then made to feel you're a nut for thinking somehting might be stirring below.

I currently on Herceptin every 3 weeks. Have done so for 5 months. Previously I had AC+ taxetere every 3 weeks for 4 rounds and Taxol every 2 weeks by itself for four rounds. Plus 7 weeks of radiation. My start to treatment was a mastcetomy in Dec 2005.

So wonderful to have contact with sisters in similiar situations and taking control of their dis-ease. It can be very isolating in the non BC affected world.

Thank you and regards Kim

Stage IIIa 4 tumors - grade 3 11/24 nodes Her2 3+

[valmr2]

Just wanted to say hello and that I am glad I found this group. I had a 6mm tumor taken out in December. Lumpectomy, IDC, er/pr - HER2+ differentiated margins. Started chemo (Taxotere and Cytoxan) and herceptin in January. I have 2 more chemos to go, Herceptin the rest of the year. I found this site because I did a search on Fibrin Sheath which I found out today I have on the end of my port. They will give me Cathflo next week when I go in. Have not had any problems until now.
Val

[janet/FL]

Val,
Welcome to the group. Glad to hear you are doing so well. Hope they clear up the port problem easily.
I was just wondering, with your 6 mm tumor did the doctor give you a choice about chemo? That is, did he strongly recommend it? I had a 9 mm one two years ago and it seemed I was almost borderline for chemo.
This is a great group of women. If you have any questions, just ask away.

[tess]

I just discovered this website by accident. Where were you when I was diagnosed in 2004? Man, I had to search high and low for information and what it meant to be Her2Neu positive. To have so much info on one site is terrific! 21 months of treatment have left me cancer free and healthy! Who can argue with success. I would encourage any newly diagnosed patient to have faith...

[gin-tx]

Dear Tess,

Yes this web site offers hope and inspiration plus knowing what others are going through. This is my second episode of BC, other was 11 yrs ago, I thought I was free and clear-wrong! This took everyone by surprise including my surgeon. I was diagnosed for second time in April 2006. Have been on Herceptin and Aridia every 3 weeks, am really starting to feel effects of it. I go to treatment on Fridays so I can rest and get strength to go to work on Mon (am only able to work part time). This week I was still home on Mon, felt lousy. Returned to work on Tues, but still don't have a tremendous amount of energy. I hope to get to the time when my onc tells me I'm in remission, whenever that will be who knows. Glad you have done so well. Continue looking at web site, I think it's interesting the way people are being treated for their BC in other parts of the country.

hugs,

ginkott1@aol.com

[visualizehealth]

I was diagnosed last month after a right mastectomy for DCIS. They found a 9mm spot. My nodes were negative. The surgeon was less than positive with me, which I think is inexcusable. I cried for a week. Luckily, I have had the amazing support from all of my friends (many that I haven't seen or heard from in months) and have also found courage from this website. I am currently looking into the art of Chi-lel. It is a very interesting form of Chinese healing. Their website is www.healthandcreativity.com (http://www.healthandcreativity.com). God has also brought me to another doctor in Atlanta, who I talked with on the phone and sounds so much more encouraging. Praise the lord. I know he is walking beside me every step of the way, if not carrying me.
Annie Reinert

[visualizehealth]

Hi Hazel,
I'm a nurse also, working on a med/surg floor. I originally planned on being out for 6 weeks, as it was believed that I only had the DCIS. Now that I know about the her2, I am waiting to go to a new doctor (oncologist/surgeon) to see if I need chemo or not. I was told that I probably wouldn't be able to work the floor during chemo due to decreased immunity. The hospital has been more than accomodating, though. They said they will work with me to find something that is not directly patient related so I can at least keep my insurance and other benefits. If I don't have to take the chemo, I was also thinking about cutting back to part-time (2-12 hour shifts/week) just to give myself a break. It sure has presented many challenges to myself and my family (I was the bread-winner and my husband was the house-husband). The only way I can look at it though is a positive change. I will get to spend more time with my children (2-year-old girl and 8-year-old boy). I hope everything works out well for you.
Annie Reinert

[Sheila in Salvador]

In June 2005, I was diagnosed and had a double mastectomy all in the course of a week down here in El Salvador where I had been teaching for that school year. They don't fool around with waiting much down here! I had the usual tests and biopsies before the surgery and the post surgical biopsies came back as ER/PR- HER2+++, 8 of 18 nodes positive. When the HER2 diagnosis was explained to me, I felt like I had been given a death sentence, even though I am a really positive up-beat person. I started with the 4 AC followed by 4 Taxol (oh, my God! What terrible stuff!). After a month off from chemo, I had 35 rad treatments and then started with Herceptin.
Last July, I developed mild lymphadema in my right arm, which has really not been a problem. The one good thing that happened due to that was when the therapist, in taking my history, said, "Oh, you have the GOOD cancer!" I couldn't understand how she could say that, but then she explained that there are so many great things happening in the treatment of HER2. This month was supposed to be my last Herceptin treatment, but I had to stop in December due to congestive heart failure (MUGA of 35). By the end of February, my heart function was up to 43 (Yea!). I guess my biggest question right now is will not finishing the year's regimen of Herceptin come back to bite me? Could I restart the Herceptin when my heart function gets back up to the 60's? Both my oncologists (my one down here in El Salvador and the one that I work with in Colorado when I go home for summer and Christmas) think that I'll be fine. But, still I wonder. Anyone out there with some thoughts on this?
God bless you, my sisters, in this fight of ours. Thank you for sharing on this board.
Sheila

[Ruth Ann]

Thanks Christine for this site. I have gotten so much info from it. It's so good to know that I am not alone in all of this. We are all united together. I was diagnosed in Feb 07. Lumpectomy in March 07. Re-excision lumpectomy in April 07 with mammosite placement finished on April 8th. I also have MS that has been in a state of remission for the past 6yrs. I am the following:
Stage 1
1.1 cm IDC with DCIS
Grade 3
ER+ and PR+
HER2+ by FISH
Lumpectomy x's two with clear margins
Mammosite completed 5 days of treatment
Now on to oncologist regarding chemo and herceptin. Thanks to your site I have lots of questions to ask the oncologist instead of just going along with his recommendations or hearing someone say do what the doctor tells you.
I applaud everyone for their courage and look forward to spending lots of time on this site.
If anyone has had a port a cath I am curious as to what your opinions are to having one inserted.
Ruth Ann:)

[gin-tx]

Dear Ruth Ann,

Sounds like you have a lot to deal with between BC and MS. But sounds like you have a good understanding of what is ahead. The port is wonderful as this is my second episode of BC, so I can't do infusion in my arms. You can find other replies on this web site rather going into that detail again. I was hesitant at first but after it was explained to me, it makes it so much easier. Some days it's a little more uncomfortable and my nurse tapes down whatever, sometimes it's the way it's positioned in your body that can make things uncomfortable. Has your onc told you what drugs you will be receiving. Right now all I'm getting is Herceptin every 3 weeks and Aredia every 6 weeks. Next week is my long treatment.

Keep me informed of your progress and I wish you the best.

hugs,
ginkott1@aol.com

[Ruth Ann]

Gin,
Thank you for the info regarding your port. I'm scheuled to have one put in but at the same time I am still thinking about it.
I see my oncologist on April 24th. Then my next journey will continue. I will let you know what he has suggested after I see him. There are a few chemo medications that I am going to refuse to take. One being adriamycin. My ex husband has lymphoma and he has been having problems with his heart after taking this medication. He never had heart problems before and no history of heart problems in his family. I do have a history of heart disease on my father's side. So will see. I will keep an open mind when taking with the oncologist.
I love this site and am so grateful for you and everyone for all the info that is given and learned.
Have a wonderful weekend and always remember to look both ways:)
Ruth Ann

[LisaElder1972]

Hello all.My name is Lisa and I am very happy to be a member of this site.I am an active member of BreastCancer.org and I love it there too but I wanted more info on Her2.My signature line has the specifics of the "Beast".I look forward to getting to know all of you.I have read alot of the posts and I can tell you all are strong and intelligent warriors.

Lisa

[TSund]

Hello,

New to board and new and struggling with my spouse's diagnosis of breast cancer; stage 2, graded 2-3 (but MRI called it Locally Advanced Breast Cancer), as it is an "area" of several tumors 7-8 cm. Possible 3 node involvement but not verified yet. ER+ PR+ HER2+ 50 years old but still pre/maybe peri-menopausal. Have so many questions:

1) Has anyone heard anything positive or negative regarding the idea of Oophorectomy to reduce estrogen load for hormonally positive tumors either alone or paired with aromatease inhibitors? It was reported as having = effect as chemo on hormone + tumors. Seems like it should be considered especially as HER2+ often resistant to Tamoxifen but I have found little on the idea. It can be done laparosopically in a day surgery.

2) We welcome anything we can do to support health, have read here about fish oil, (how much?) vitamin D, olive oil, excercize, lower body weight, and fiber (soluable or insoluble?) If you could specify or suggest anything else we'd be so grateful.

3) I am confused about PR+. Read some of John Lee's book on natural progesterone years ago and I thought natural progesterone HELPED with excess estrogen. (that progesterone is in fact an antagonist of estrogen?) If progesterone also feeds tumors, then why is a ER+/PR+ diagnosis better than ER+/PR-?

My email is Profcollege@hotmail.com but I will also try to check out this board for answers if I can navigate my way back!

THank-you so much,

Terri

[Dianaq]

Hi Terri,
I am 50 years young and was diagnosed with Her2+ a year ago. I had a lumpectomy, radiation and am taking Hercepton once a week for a year. I did not have Chemo because I have not seen enough data for Her 2+ pre menopausle woman that has any information. I feel good about my decision. I just live day by day.

[rentrac]

I'm new to the site, but seem to be getting far too knowledgable to some of the features of breast cancer since my first diagnosis in 2003. Terri, I chose to have bilateral oophorectomy and hysterectomy when I had my mastectomy ( an almost clean sweep). I knew I had a family history for endometrial cancer, hence the hysterectomy. Though I was offered goserelin to create a chemical menopause, the long term effects of the drug aren't as well known as the long term effects of surgical menopause; and for me, I feel more comfortable with the known in this case. I took the approach of reducing estrogen as much as possible... there's only so much that we know for now, but this was a way that seemed within reason for me. Effexor XR has done a wonderful job of countering the volcanic hotflashes I expected from surgical menopapuse based on what chemo had caused earlier... not that there haven't been unwanted changes, but they have been quite livable.

Can certainly understand your concerns, Ruth Ann, as to Adriamycin. I had dense dose Adriamycin with Cytoxan. Since then, I have also had a spell of Herceptin which is also cardiotoxic. As wierd as it sounds, if at all possible, I took a daily walk and always felt the better for it. Sometimes it was a verrry slow walk which I called my "Hot Tea Walk". Knowing I would try to take it too fast or too far, I would fix a a steaming mug of hot tea and walk very slowly down our lane (walking too fast would splash it on myself!). If I got tired, I'd stop and sip my tea. Then I'd make my way back slowly back home. I'm convinced it not only cleared my mind, but it helped me keep my heart and and other muscles in just a little better shape than they might have been. Between the 2 drugs, my heart function has decreased, but it is still in the normal range, and I've now switched to riding a bicycle so that I can counter the latest side effects and still work on keeping myself in the best shape I can. Meanwhile, I learned to think of medications and their effects as being like shoes - Yes... shoes. It's not until you try 'em on that you find out if it's the right style, right size or right brand. It may look like the perfect match, but it may need a little tweaking here, or just may be perfectly wrong for you and right for everybody else! And even the best experts don't always get it right.

Meanwhile, I'm delighted to have stumbled on this site. Anybody had Gamma Knife? I'm one month from having had the treatment and starting Tykerb less than a week afterward. I'm suddenly the Clearasil queen of the silver hair set, and can't tell how much is from Decadron and how much is from Tykerb! Xeloda is not a part of the picture for now. Would like to hear from others who have similar experiences.
warm regards-
Rentrac

[Christine]

Gina, It' great to see you here again. You will probably get more replies on the main her2 message board. The more you post the more responses. Hope your feeling well, it's been over a year or 2 since we met at Cure conference. Hugs, Christine

[neeley1108]

Hi, hope everyone is doing well today.

I am a 32yo, recently diagnosed with stage 3 BC, ER-/PR-, Her2+ . Started (4/23/07) neoadjuvant chemo (Carboplatin and Taxotere) along with Herceptin weekly for 24 weeks. I am in the 3rd cycle. Surgery anticipated after chemo is complete with radiation to follow.

I have been browsing through everyone's posts here. While I am trying to keep healthy, I'm trying my hardest to remain positive, yet I am so apprehensive about the future.

I am grateful to this site for the updates, support and encouragement. Thank you all for sharing your info and positive vibes. My thoughts and prayers go out to you all. Take care.

[BonnieR]

Hi! I am new here and have already received thoughtful replies to some of my questions. But I notice that there is a "shorthand" used that I am still not familar with. Does the site have a glossary of abbreviations so a newcomer can better understand?
Thanks!
Bonnie

[janieR]

I am so glad to have found this site . It has so much information on, something in England we are sadly lacking in

I was diagnosed with Breast Cancer in February 2006. Had mastectomy and found to have 2 lymph nodes affected. Started chemo and when I had had my 2nd chemo was told I had Her2 and needed herceptin later in the year after rads. Luckily herceptin was licensed for early stage breast cancer just in time for me and I have just had my 13th! Apart from feeling tired I feel good and hope now to be around for some time.

Thanks so much for all the lovely people on this site, they give me so much confidence.

JanieR

[tricia keegan]

Hi Janie, I live in Ireland so not to far away from you! I'm glad you found this site which has been a wonderful support for me too right through my treatments. I thought you may also like to check out www.cancerbuddiesnetwork.org (http://www.cancerbuddiesnetwork.org) which is based in the UK, a fairly new site but the founder Jan has had bc too and if you choose you can find a buddy near where you live to correspond with. Good luck with the rest of the herceptin treatments!

[Heide]

Hello, I stumbled on to this site yesterday while doing a little research on HER2. Thank you for creating the site Christine. What a wonderful service you've provided people. I look forward to reading more...I have dealt with the rollercoaster named HER2 for 2 years now and don't know anyone else personally that also has this disease. It will be nice to log on.

[gin-tx]

Dear Bonnie,

I still have not figured out all the symbols, etc. I just try to do the best I can, not sure if I'm even replying sometimes on the right ikon. I imagine others are in the same boat. If I get stuck there is a nice guy who sort of oversees the entire web site and I have e mailed him when I can't log on, etc. If I think of it I'll e mail you back and give you his web address.

ginkott1@aol.cm

[Joanne S]

I just want to express my appreciation for this site and for all your dedication to supporting women going through breast cancer journeys.
May God Bless You! THANK YOU!

[gin-tx]

Dear Johanne,

Yes I think this is a wonderful area for women who are linked by this horrible disease to be supportive for each other, learn about their disease and how others are managing. I hope this finds you improving from your surgeries and gall bladder problems. It seems that things always hit at once in multiples. Keep me informed of your progress.

ginkott1@aol.com

[Joan S.]

Dear Christine,
I was diagnosed with stage IV HR+ Her2+++ a month before my daughter's wedding. I found the lump myself after (supposedly) a clean mammogram 7 months prior. It has been a shock. I have been looking for a support site for months and am delighted to have find this one. I am new to this and don't know about threads etc but I guess like living with cancer I will learn a new skill. I have found a lot of useful information already. Most of all it has given me hope that I can live with cancer! My doctor has told me I will be on chemo forever. Does this mean that I will have weekly taxol treatments for the rest of my life?
Thanks, Joan

[BonnieR]

Dear Joan, first of all I want to say I am glad you found this site. I guess none of us is happy for the reason we are here but it is the source of great support and hope. And information....
You asked what the oncologist meant when he talked of being on chemo indefinitly. I understand how that is, when you leave an appointment and then are full of questions later. Be sure to write these down to bring to your next visit. And write the doctor's answers too. Can someone go with you to your appointments? (there were times my husband and I heard things entirely different! I was SO upset I did not process information well at the beginning) Meanwhile, you can phone the office and ask for clarification. Did they give you literature to read?
I am not really well versed on the chemo drugs but I THINK Taxol is given for a specific amount of time. I will say, in my case for instance, I will receive Taxol along with Herceptin and another drug IV for 6 doses. Then continue the IV Herceptin for a year. After that, if all goes to plan, I will be taking Femara by mouth. Forever probably. And it is all considered a form of chemotherapy. So your doc may mean that you will require treatment for a long time , but not necessarily the same thing throughout.
You need to remember that each and every one of us is different in the fine points of our diagnosis and the characteristics of our cancer, so each treatment plan can vary. And can change and be adjusted along the way, depending on our response to different regimes.... But we have alot in common too. And I have learned a great deal on this site. I have learned the right questions to ask at my oncologist's visits by hearing from the gals who have gone before me on this journey we share.
I know some of the more experienced and knowledgable members here will come on board soon and offer you their experience, strength and hope.
We are all here for you. Keep the faith....

[tricia keegan]

Hi Joan,
I'm sorry about your diagnosis and can imagine how shocked you must have been having had a mammo a few months prior to this.
I'm not stage iv myself but there are a lot of ladies who are on the her2 message board who are living and doing well for years.
Most of them have chemo or herceptin for a while until they are NED (no evidence of disease) and can then usually take a break. from what I've gathered the chemo is only restarted if the cancer recurr's somewhere.
I hope this is right but if you'd like to post this on the other board I'm sure a lot of them can tell you themselves.
You'll find a lot of support and info here and I'm really glad you found us. I came to this site two years ago when I was diagnosed but also post on the Komen board. Good luck with your treatments,I hope they go well and you get to NED soon yourself!

[tousled1]

Hi Joan,

Welcome to the board but sorry our have to be here. Being Stage IV is a very scary thing but there are many women on this board who are Stage IV and have been for many years. Being told you'll be on chemo the rest of your life is a frightening thought but is not really accurate. I am Stage IV and was told that I will be on chemo until I reach the point of NED (no evidence of disease) at which time actual chemo will stop but I will continue on Herceptin indefinitely.

[rentrac]

Welcome to the Cancer Club, Joan. I realize that sounds a little wierd, but as frightened as you probably are at the moment, you'll find that everybody with cancer, in general, and breast cancer, in particular, has a special bond. When I've been in my bald stages with chemo (I hate wigs, so I'm an easy pick), I've had countless numbers of total strangers approach, share their stories about their own cancer and who have included me in a special part of their thoughts and lives. It's very humbling, but I've also found I do the same for others now. We support each other. These gifts of sharing and caring are what I consider the highest beautiful mountains in my world, and they can only be this high because of the depths of the canyons that cancer has provided.

Cancer treatment does become a way of life in some ways. It always depends on your particular circumstances. I truly understand the shock of your diagnosis so soon after a mammogram; I found my suddenly painful lump only 6 weeks after my mammogram was read as normal on that side, and microcalcifications were re-imaged on the normal/other side. Seems my lumpy tissue lead to an assumption that the opacity on the edge of the scan was just layers of lumpy tissue when in fact it was a 3.7 cm tumor that my Gyn and I couldn't palpate just 8 weeks earlier. (Told you I was lumpy!)
Cancer does become an integral part of your life, even if you never need treatment after this, just because it's so sneaky and can crop up again years later. It's easier if you remember: feel free to ask any questions you need answered. Second opinions are good - there are many ways to approach a problem and even the best teams/docs benefit from other opinions. It's ok to be scared. And always remember there's a bunch of us that have a pretty good idea of what you're going through - and we're honored to share in your fears, your tears, your triumphs, your celebrations and a good wisecrack on occasion - 'cause what's life without a good laugh?
Warmly, Rentrac

[Joan S.]

I just want to thank you for all of your supportive posts. I really feel like I have found a site where so many people understand what I am going through. I do take my husband to all my appointments. I am very fortunate that my husband retired before my diagnosis so he has been with me all the way. I am also very fortunate that he and the rest of my family are VERY supportive but in the end this is a journey that I must take. I also have "lumpy" boobs and three years ago they found "something" and I went for a second opnion and they said it was a calcification and I went back in six months but no ultrasound was done! I wish I had known then what I know now. I would have insisted on an ultrasound or a MRI. That's why this site is so important. I want to have knowledge on my side now and you ladies are giving me that because of your experience. I plan on seeing my oncologist on Friday before chemo and I will ask about my headaches and pursue an ultrasound for my ovaries even though my pap came out "normal".

[gin-tx]

Dear Joan,

I am glad you are getting the feedback you need from this site. I still am trying to figure out a thread and a quote. Don't know difference but when I reply to someone's message hope it gets there. Would like to reply to the individual person only but can't quite figure out how to do that. I too am going thru treatment, Her IV metastatic, had BC 11 yrs ago, no chemo done, only radiation, now I'm doing Herceptin every 3 weeks along with Aredia. I too plan to think of retirement at end of yr, I can't manage working with the fatigue, am out of work a lot and know my employer is not happy. I have had 2 surgeries in last 3 weeks, port stopped working. Maybe this new one will be good for a long time. Keep in touch and let me know how you are progressing.

ginkott1@aol.com

[chicagoetc]

I am new to all of this, glad to find a forum to meet others, a place to get information.

I am 50, was diagnosed 7/13/07, had surgery (right side modified radical with lymph node dissection) on 8/15/07, had a portacath inserted 9/7/07, started Chemo on 9/14/07 (AC -> T + Herceptin with radiation somewhere after the T). I am ER/PR-, HER2+, Grade 3, Stage IIIa, 3.2mm tumor with 4/19 lymph nodes involved. From what I can tell my medical providers know what they are doing (Evanston Northwestern Healthcare Kellogg Cancer Center).

It took me quite a while to start to understand the diagnosis (even to name it) and the recommended treatment. I still have hundreds of questions though am plenty challenged just getting from one step to the next. This is not fun (you already know that or you wouldn't be reading this). This is not how I planned to spend my holiday vacation. On the other hand I am thankful to have insurance, a job that is willing to work with me even if I am going half speed, a husband who is willing to go above and beyond the call of duty.

I don't know what else to say. [Maybe you know something I need to hear.]

Melanie

[dhealey]

Melanie, Welcome to our club. So sorry for the reason you are here. Just like the rest of us you didn't ask to be in this club. You will find a wealth of information on this site. When I was diagnoised last Oct. I visited quite a few different sites, but have stayed with this one as everyone is her2 positive. I have had a difficult time finding others with that diagnosis as many women I know didn't even need chemo. But on this site we are all in the same boat. These ladies are very knowledgable. Good luck with your journey and I look forward to reading your posts.

[chicagoetc]

Thanks. I think this will be helpful as well.

[tousled1]

Melanie,

Welcome to the site but sorry you had to find your way here. You will find the women and men on this site extremely knowledgeable and supportive. Any questions you have I'm sure you'll be able to get an answer. Good luck to you as you begin your journey.

[gin-tx]

Dear Melonie,

I think the best advice I can give you is communication with your onc. You have to be able to trust him, have faith in him, and not be intimidated to ask questions. No matter how silly, mundane or if it feels stupid, don't let it eat at you and wish you had asked rather than go home and wonder. And if you don't feel well call his nurse. That is what they're there for. I'm sure I call at least once a week, maybe a med isn't doing what I think it should be, allergies are bad, etc but that's what they are for. I am so fortunate to have a wonderful, caring dr who I'm not afraid to ask whatever is on my mind, cry if I feel like it and ask what's next. This is my second episode of bc, first in 1995, lumpectamy followed by radiation. This episode which was diagnosed in 2006 is much more aggressive and I've had mountains of complications and problems that I did not expect. But I'm hanging in there, work the amt of time he will allow me to continue working and am trying to hang in a few more months, then will look maybe at retirement. I love my job and the people but sometimes the thought of getting up in mornings to go to work are not what I want to do rest of my life. Still trying to make that decision.
ginkott1@aol.com

[Denise La.]

Hello Ladies,
Thanks for the welcome I am so grateful to have a site where I can meet other women like me and chat and ask questions, thanks again .
Denise La.

[cath52]

Hello,
I was diagnosed 02/06 with stage 1b,er/pr-Her2+ Medullary bc. Went through 4 rounds of A/C chemo and then started Herceptin in Aug.06. Finished treatments in July 07. Just had my 3 month check-up. I just happened upon this site and wish I had it when I was going through treatments. I would ask Dr. about different problems I was experiencing and felt like all I did was complain. Found this site and realized most of my problems were side-effects of Herceptin. Plan to stay with you and the ladies here to find the answers to my questions now. Thank you so much!! This site has been very informative for me and I've only been here for about a week.
Cath52

[lilyecuadorian]

welcome to the board CAth52 ..here are the wonderfull support that I wish I know as soon I was Dx but I find moths later

[Joan S.]

Dear Lily,
I learn so much from you brave ladies and you are such a comfort. This is site is so helpful. I have a friend and I am so happy for her. They found the cancer via a mammogram and she had a lumpectomy and radiation. They feel they have "cured" it. However, I can't relate. I will always have to "live" with cancer. I am stage 4, her 2+, er+. I was surprised to hear that you had surgery with mets. I didn't realize that they do it once it has spread.

[~Bellydancer~]

Hello all, I am new to the forum. I am recovering nicely from my mast/reconst. of my left breast using the diep flap. I anxiously await the oncology consult. I don't do waiting v/ well. I now find myself reading and reading and am getting quite concerned (quietly) about the fact of reccurence/ mets in other places. I am ER/PR neg and HER2 pos. I haven't said anything to my Hubby since he is stressed out as it is and I don't want to give "false" info/ despair.
Can any one help me to shed some light as to what I am looking at in regard to chemo Tx.. duration, side effects prognosis?

[gin-tx]

If you had clean nodes, that is really a good sign. Every oncologist diagnoses things differently and as far as length, drugs, etc, it would be impossible for me to make a prediction or would I. When do you go see your onc. I think it's great you did not have to wait on having reconstruction. Keep me informed of your progress. We're all fighting the same battle with this disease.

ginkott1@aol.com

[sdouglas7218]

Hi all, I dont know if I am in the right place or not. My dear friend has just been diagnosed with Her2+ breast cancer. I think I recall her saying stage II, but very close to stage III. I heard her tell me...aggressive. I have researched and read "poor prognosis". This is all so overwhelming. I am trying to stay positive and upbeat for her! I love her to death!!! I also heard her tell me that lymph tissue was involved and her dr said he would do a mastectomy and she would NOT???? have to worry about reoccurence????? That just seems to be not what I am reading. She also said she would need chemo for a year....maybe she is talking about herceptin? I know I sound like I am rambling...I apologize. I try not to ask many questions of her...as this is all so new to hear and her mind is a whirlwind right now. Her2+ is more likely to reoccur yes?? Thank you....this is a wonderful website and as she digests her condition more, I am going to refer her here.

[BonnieR]

You are absolutly in the right place! Your friend is lucky to have you in her life. In my experience, it is okay for you to ask her questions. Sometimes people don't know what to say and that is even harder. She will probably welcome the opportunity to talk. And maybe your questions will help her clarify things. I hope you do tell her about our site soon. We are on the path she is traversing and will be able to offer encouragement and experience. And lots of hope!
Keep us posted.
Bonnie
PS: Just wanted to add, the most important thing is that you just BE there for her. Let her set the pace. But it is wonderful when a friend offers to give rides, go to appointments, do errands, that sort of thing.....

[tousled1]

sdouglas,

Welcome. To address your concerns: By having a mastectomy it does not reduce the chance of mets or a recurrence. HER2 is a more aggressive form of cancer but with Herceptin and Tykerb we are paving the way for very good prognosis. Your friend is probably referring to Herceptin when she says she will be on chemo for a year. She's lucky to have such a good friend.

[sdouglas7218]

Thank you for all of your replies. She is ER+ and PR+ as well as HER2+ again with lymph tissue involvement. I had suggested to her that perhaps she needs a total body scan...am I off base or would this be the thing to do? I dont understand what is taking so long for them to schedule her mastectomy. They have found areas in both breasts. I just feel they (physicians) are dragging their feet and going to slow!!! I did mention the site to her and hopefully she will sign up!! This is a great site, its just so unfortuneate that something like this has brought everyone to the same place!

[chicagoetc]

Kate,

Please explain: By having a mastectomy it does not reduce the chance of mets or a recurrence.

Worried,
Melanie

[Joanne S]

Kate,

In your previous post to sdouglas7218, you stated 'By having a mastectomy it does not reduce the chance of mets or a recurrence'.

If that is the case, why do we get masectomies?

My understanding is that masectomy does reduce the risk of recurrence/mets. Please clarify. Thanks.

[tousled1]

Joanne,

All current research indicates that having a mastectomy does not reduce your chance of a recurrence or mets. My surgeon and oncologist both said that a lumpectomy followed by radiation would give me the same protection . I had a bilateral mastectomy for my own peace of mind -- In other words, I personally felt it gave me a better chance even after all my research to the contrary. It was a personal decision for me to have a bilateral mastectomy and one I do not regret. I developed mets only 3 months after completing my year of Herceptin.

[Joanne S]

Kate, OK now I think I understand what you meant.

A 'lumpectomy followed by radiation' would give the same protection for recurrence/mets as having a 'mastectomy'.

In other words, the risk factors for recurrence/mets is the same for mastectomy as it is for lumpectomy with radiation---not any better.

OK-I got it. I got it. Thanks for clarifying Kate!. :):) :)

Now Kate,
do you know if the risk factors for recurrence/mets are the same or if they are improved if you have a
'mastectomy with radiation'
versus a
'lumpectomy with radiation'?

Sorry I have an audit, analyst, and programming background so I'm a nit picker .

Thanks,

[tousled1]

Joanne,

I had a mastectomy with radiation due to the fact that I had lymph node involvement. Usually there is no radiation with a mastectomy.

[Joanne S]

Kate,

I, too, had radiation after having mastectomies and 16 lymph nodes removed.

Oh--I have my days and nights mixed up. I haven't been to bed yet and it's 5:00 am. I guess I better sign off the computer.

Best well wishes to you,

[WomanofSteel]

I also have been reading posts on the her2 site for some time now. I've found it very supportive and informative. Not much of a joiner, but since recently being diagnosed stage iv with mets to several nodes, lungs and liver I felt the need to share a little.

[chicagoetc]

Sounds like you ARE a woman of steel.

Glad you joined in. I am sure a lot of women here will be able to relate to you and offer support/advise.

Blessings,
Melanie

[callycaz]

hi new to site, so not sure of my way round but would like to say 'hello' to all.
there seems so much information to read up . i never knew there was so much to know...
thanks for setting up the site, i'll look forward to getting to know a few new friends..lol to all cally xxx

[hutchibk]

Hi Callycaz - welcome to your new world! Don't be afraid to ask LOTS of questions. And there is no such thing as a stupid question - especially here at HER2 Support. Sorry you have to join us here, but it is a tremendously powerful and informative place, just don't try and learn too much at once, it will make your head spin!

[callycaz]

hello
thanks for the posting, seems ages since i joined.your the first to say hi....
just read your history. can't believe you cope with so many mets.
the thought of mets frightens me to death. you are doing amazing... lol cally xxx

[Patty F]

Welcome Cally
So glad you have found us and have joined....also sorry that you had to join. These ladies and men here are a wealth of information. I depend on them daily.

[Believe51]

Wanted to extend my greetings your way, welcome to our home. So sorry you have to be here but glad you found us. This is a wonderful, compassionate and knowledgable site. Feel free to ask us all anything you deem important, someone will reply. So remember, you are not alone in this, we are right by your side>>Believe51

[wolffrobyn]

her-2 diagnosed yesterday need help

[Believe51]

Welcome. I will say again that this site is surely very informative and loving. I am so sorry that you had to hear that news but I am so happy that you found us. If you have some questions or concerns post on the main forum to get the most replies. Please take care, I know how devestating this all can be and how overwhelming it can get. These friends here are amazing, you will never be alone again. Do any searches you made need at the pull down search bar. Sending Healing Prayers>>Believe51

[Mary Jo]

Hello Wolff....

Just wanting to say we are all here for you. You are at a frightening place right now but through knowledge, support and love you will get through it. You will. Please turn to us anytime. As "believe51" said, go to the the main forum "her2support group" to ask questions, get advice and/or opinions. You will get most responses there.

God Bless you and Peace to you...

Mary Jo

[swimangel72]

Hi everyone - some of you may know me from the breastcancer.org web site. I was just diagnosed as HER2+ after a second FISH test confirmed the first one done in February. Tomorrow I visit my oncologist to discuss treatment. I'm very disappointed in this latest news because right from the start of my dx, I was told "you caught it early, it's not aggressive, you'll probably only need hormone therapy"......but I'm happy to have found this web site to get more information from people like me! Thanks for listening!

[Bill]

Welcome, Swimangel! I'm glad you joined the site, but sorry you have to be here. My thoughts and prayers will be with you tomorrow. Take a notebook and someone with you, if you can, to help listen and remember what the doc. says. Sometimes, it can be too much to take in all at once. Bill

[Jackie07]

Hi Swimangel, welcome!

We've got several angels here: there's AlaskaAngel and others...You can find old postings by clicking the search button on the yellowbar on top. There are many, many old timers here who have lots, lots of knowledge and experiences battling this vicious disease. We are all on the same team. Fighting together give us much better chance to win the battle.
You can also go to User PC if you like to put a signature on your post.
Welcome again.

[swimangel72]

Thank you BIll and Jackie for your support. My oncologist said he wants to put me on Herceptin and Navelbine (iv injections once every two weeks - after 4 months, just herceptin for a complete year.) So you'll be seeing me around here in different forums - hopefully not complaining too much!

[D.W.]

Tomorrow I begin radiation on my brain (ugh). I was diagnosed with b.c. her2nu in 4/06. I did the chemo thing until 12/07. I've been on herceptin the entire two years. But the herceptin does not reach the brain effectively.

The dr. says that my hair will not come back. If it does; it will be thin and wispy. Any experience with this???

God is good and I have piles and piles of people praying, but I want my hair. So I have the "Prayer for Hair" club. Any joiners???

So nice to find this website. When I get around to it, I'll post my exciting signature with all the details.

D.W.

[Bill]

Welcome aboard, D.W. It's a great site, but I'm sorry you have to be here. Please keep us posted about your treatments. Best wishes, Bill

[juanita]

Hey DW a friend of mine had radiation on her brain and they told her that her hair wouldn't come back but it did. It wasn't as thick as it was but it did come back. Maybe yours will too.

[chicagoetc]

D.W.:

Wow, that's a lot of chemo (4/06 to 12/07)...but I assume not the entire time. Welcome to the site and hope you find it helpful. Just curious re what stage you were (IV I assume Prior to activity in the brain?). Looking forward to having you here and relaying what you can of your journey. We all learn from each other.

Blessings and welcome,
Melanie

[D.W.]

Chicagoetc,

I meant chemo from 4/06-12/06!!! So much for my proofreading skills!

Thanks for the welcome!

D.W.

[DanaRT]

Hello,
I was dx'd in November.
When I first surfed around this website I was very frightened and wasn't ready join in. After six rounds of T/C/H and with nine radiation treatments to go, I am more encouraged about my future. I will continue with Herceptin through December.

I am not sure how to use this forum entirely. At what point or location can I post my history under my signature?
I am thankful for this special group of strong, intelligent women.

Dana

[chicagoetc]

Go to "User CP" on the horizontal bar at the top (next to the word "HOME") and then "Edit Signature" on the next vertical menu you see...

[DanaRT]

Thanks. Done.

Dana

[Jackie07]

Welcome, Dana.

Since you have been reading the board for about half year, you might have seen my posting for some other new comers regarding recurrence.

I am not trying to scare anybody, but I do want to share my experience, so others would not fall into the same trap.

Your tumor size is exactly like mine when I had my first surgery, a lumpectomy, in 2003. The surgeon thought she had a clean margin. But she cut exact the tumor she saw three weeks before the surgery, not realizing my fast-growing cancer had already sneaked out of that margin - she had a clean margin, but I had a recurrence. And that recurrence was not found until 4 years later when I became quite sick.

Ask for an ultrasound if they retake your mammagrams - they saw some suspecious area in my x-ray every time but continued to call it scar tissue. I should have requested for the ultrasound, but I trusted them too much.

Please trust yourself and do your self exam regularly. Welcome again.

[Bonnie02]

Hi all new to this site, I am her2 positive and was supposed totake herseptine but my muga scan was not good so I will be taking something else. Not sure what it is will find out next week. Is this a bad thing or is it just different can anyone help. Thanks Bonnie

[yogipeters05]

I'm a newbie to this site, I was diagnosed in January. I am currently in treatment taxol/herceptin so far, so good. I finished DD A/C near the end of April. Pretty soon it'll be on to 6 wks of rads!! I'm just ready to get my life and hair back!! Hello everyone.

[tricia keegan]

Hi and welcome,

I had the same treatment and found the taxol far easier to tolerate than a/c which knocked me flat with fatigue.
I found radiation to be a breeze compared to chemo although it's a pain getting there each day for only a few minutes. I was lucky I had no burning or redness but just had an itch and went slightly pink. I used 100% natural aloe vera and am sure it helped a lot.
Good luck with the rest of your treatments and hope you post again to tell us how you're doing.

[Jackie07]

Welcome, Yogi. We are all here for each other. Please be vigilent on your self-exam - yes, even just after the surgery. I would feel my time here worthwhile if I can prevent just one person from having undiagnosed recurrence.

[Patty F]

Welcome Yogi. Glad that you found us. I have just started the 6 weeks of rads. Today was day 9 of 33. Time goes very fast.

[flynny]

Hi Everyone,

I have come to this website for information prior to date, but tonight I decided to actually join the group and start posting. I am looking forward to talking with you all and bouncing things off of each of you who are in similar situations.

Carpe Diem!

[DianneS]

Hi everyone,

Thank God I found this site.

I have invasive ductal carcinoma of the right breast, just diagnosed 4 days ago. I am grade 3 and HER2 positive. I will have surgery Sept. 9 to remove at least 14 lymph nodes. My lump was just a little over 2 cm in size. The pathology report says no vascular involvement.

I feel ok and didn't know I had this terrible thing growing in my body. I felt no lump in the affected breast.

From what I have read on many sites my chances of survival are dim past 5 years, if even that much. No one seems to know what happens after that point. I don't want to live if I have to worry about a recurrence and/or being on chemo forever. Also I talked to a woman who has the same thing as I do, and she had congestive heart failure while taking Herceptin for her breast cancer. So, if the cancer doesn't get me, my heart will.......

I see not much reason to hang on since my chances of making it are so slim. I'm sorry to be so negative. I just feel quiet resignation about all of this.

I had a cerebral aneurysm that had not ruptured fixed in 2006 and am doing fine from that....I thought I'd have another 30 years. I'm only 55 and this is too hard to bear. My daughter and husband are devastated. I am numb.

Please help. I'd like to hear from as many people as possible who have had grade 3 and HER2 breast cancer ductal carcinoma and have been doing good for many years. Please give me reasons why I should hang on. All I see ahead is pain and an unavoidable outcome.

DianneS

[DianneS]

Hi all again,

I forgot to mention that when I have surgery on Sept. 9 the surgeon said I could either have a mastectomy or not. One option would require radiation and the other would not. He said I would have 80% chance but how can he say that since I have HER2? Would it be better to have a mastectomy?
DianneS

[DanaRT]

Dianne,

I am sorry you are feeling really horrible about your new diagnosis- it's crappy and unfair- you have every right to be scared. It is very normal to be afraid and angry.

It won't be easy but you also have many reasons to believe you will live for a long time with good quality of life. Many on this board are! When I was first diagnosis in November (age 45) this board frightened me but now I found so much information, love and support. You will too.

Her2/neu is no longer the horrible prognosis it once was. I have found that many women tolerate Herceptin and other chemo drugs very well. Many continue to work, take care of their households, go on vacation, etc.

Herceptin is saving lives. A movie will be aired (Lifetime Movie Network) in October starring Harry Connick Jr. about pushing Herceptin through the FDA and getting clinical trials off the ground. Dr. Slamon knew it was saving lives. It's the wonder drug and there are many more in the works. Read the book Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell if you want to know the story and have a better understanding of how the anti-body is working.

This is getting too long, I will finish in a private email to you.

Many hugs, you can do this,
Dana

[DanaRT]

Statistics can bog you done. I don't know my statistics of recurrence, almost don't want to know. I try to eat semi-healthy and keep a good attitude. My husband worries that if the cancer does return I will blame myself.

I choose lumpectomy and radiation as the survival rates are the same as mastectomy. But not everybody is comfortable with having radiation.

Hugs,
Dana

[DanaRT]

Me again.

Dianne, I suggest you begin a new thread so that more people will see your post.

Just thinking it will help.

Dana

[juanita]

You can't go by statistics as many on here will tell you that they have beaten them. Read more on the main forum and see what they all have to say!

[Gerri]

Dianne,

Being diagnosed with breast cancer is life changing. You are still in shock and are probably doing a little too much research right now. If you look at my signature, you will see that my tumor pathology is quite similar to yours. The statistics you are finding do not include those of us with early stage disease being treated with Herceptin. Just a few years ago being HER2+ was a dismal diagnosis, Herceptin has changed that prognosis. We are now considered fortunate, in that we now have targeted therapy to add to our arsenal. Believe me, there is hope, and lots of it!

Choosing a lumpectomy vs. a mastectomy is a very personal decision – one that only you can make. I chose a lumpectomy and had chemo, radiation, and then a year of Herceptin. It was the right choice for me; you will know what is right for you. You said you will be having at least 14 nodes removed. Is your doctor just being extra cautious? Most surgeons will do a sentinel node biopsy and just remove the first one or two nodes to check to see if more need to be removed. You may want to ask if that is possible. The recovery is so much easier than with the removal of multiple nodes.

For now, take deep breaths, and allow yourself some time to come to grips with your diagnosis. It sounds as if you have some special people in your life that care very much about you and will be there to help you through. It is so important to have a strong support system.

Best of luck with your surgery – step one on the road to recovery. I know you don’t feel like you have it in you right now to fight this, but you are stronger than you think. You can do this.

Take good care,

[Jackie07]

Hi Dianne,

Mine was also a grade 3 - very, very fast growing. It was indeed scary and I was very upset when it was confirmed. I thought my years were limited because we all learned that when cancer returns it is classified as a stage IV, signifying the original treatment had failed.

It took a whole hour for an oncologist (mine was out of town attending a conference) to convince me that it was a local, regional recurrence and would be treated as if it were diagnosed the first time. Even though it was over 2 cm and had two lymphnodes involved, I am feeling as well as I ever have been after a double mastectomy. I had to have mastectomy because it was a recurrence. I chose 'double' mainly because of the concern that I might not have good insurance in the future - I always lose my job after a cancer treatment, and it has happened 3, 4 times so far.

I am taking math courses currently and will probably become a math teacher in a couple of years. After all the brain tumor and breast cancer treatment, math seems to be the one area where I still can function in a 'better than average' way.

Will keep you in our prayers. It is scary to have any kind of surgery. It is frightening to have any kind of diagnosis of cancer. But Her-2 positive breast cancer is really a better kind of breast cancer now because of Herceptin and other new treatment options. The statistics we find most likely includes many patients in the past that did not have Herceptin.

Take care and be sure to 'beef up' before your surgery.

[rentrac]

Dear Diane -

HANG IN THERE!! Having played around with this stuff since 2003, plus being stage IV, I know all too well how this can really get to you. Last month I enjoyed my very private laugh of having members of my team secretly reveal they thought I was "kicking the bucket" two years ago... and instead I'm looking forward to a PET tomorrow that may show I 'm met free for the first time in 2 years. So much happens every year - and you never know what special drug will suddenly appear that answers your very real needs.
The beginning of this trip was "down to earth" and pretty depressing for me. I, too, have been the surgery/mastectomy/lots of chemo&radiation routes, and I feel like a poster child for stereotactic radiation (both Gamma Knife and CyberKnife). It's even more interesting to me because my team is (are?) also my colleagues, as I am a physician and started my training under many of them. Did my training help? Maybe. I believe that reading and asking a lot of dumb questions helped the most (since whem did psychiatrists know THAT much about oncology trends??) If you ever need soneone to talk to, this is the place to go. I've found this group to be the most up-to-date and supportive of any around. Welcome to this miserable club, but I hope your're lucky enough to find out just how wonderful everybody is here. I know know it's been worth it to me.

Much caring - Rentrac

[janet rose]

Hi My name is Janet. I live in London, Ontario where Herceptin treatment is free. It is covered by the Ontario Government. I finished my tenth treatment and I have eight more to go. I am also on arimidex.

[Jackie07]

Welcome Janet,

I think most members were 'speechless' when they read that you got your treatment free. Well, we do know what heavy taxes you have to pay in Canada to get the 'free' treatment. But for a minute, I was about to ask you about the process to become a Canadian citizen since we are waiting for our COBRA health insurance information :)

Glad that you tolerated Herceptin well. Time goes by fast, doesn't it? Pretty soon you will be feeling 'lost' for not having to go for the treatment.

Welcome again.

[Tammy]

Hi, I am new to this site.. I had stage 0 BC 3 1/2 years ago.. I had 4 treatments of Tazol and Herceptan.. Well this past July I got the bad news that it was back.. Which shocked not only me but also my Onologist.. This time it was bad.. I new I was HER2+ and that there was a chance.. But this time there are alot of nodes invloved.. So what do I do.. Go online and read the statistics.. Why do we do that.. (STUPID) thats why.. Anyways, I got myself all depressed.. And started looking for other site and found this one.. I am so glad I found it.. You kinda feel like your alone.. But when you start reading other peoples stories it helps.. So I thank you very much for providing this site..

[Jackie07]

Welcome, Tammy,

Yah, it was shocking to those oncologist - because they goofed. Mine reacted the same way. My surgeon kept mumbling: "I had a clean margin, I had a clean margin..." when she saw me after I had found the new growth.

Welcome to a great place for us Her2+ recurrence guys and gals. Let's work together to fight and conquer this disease.

When you get a chance, you might want to go to 'User PC' (on the gold bar on top of the site) to edit your signature. A lot of us do that just so we can be familiar with each member's diagnosis and treatment.

Again, welcome.

[Tammy]

Thank you, very much..
I am glad to have someone to talk to.. Its been really lonley.. So glad I found this site..
Yeah my Onc. told me that if I had stayed on Herceptin this may not have happened.. But now I am on it for a very long time.. I am very optimistic. We can get thru this.. I live each day to the fullest.. Can you tell me how you deal with the down days?

[Jackie07]

I just cry my hearts out - seriously, we have to have some kind of outlet.

Somewhere I have read that it is healthy to cry, to be honest with our feelings.

Get positive people around you. Be prepared that after so many years, there's bound to be 'donor fatigue' in some, if not all.

Stay on this board. It is 24/7. And a lot of good people with big hearts are here.

[swimangel72]

Hi Tammy - I'm so sorry you had a recurrence - but you'll find a ton of information and support here, so welcome. I too am shocked at your recurrence, considering you were a Stage 0 and node negative.......was your tumor Er+ and PR+? Still - even for surgeons who say, "I got clean margins"........it's still a crap shoot because even if we're at a low risk for recurrence - the risk is real because we can never know if microscopic cancer cells invaded our blood streams and didn't respond to drug treatments.

[kindertender]

Hi - My name is Janeen and just had a lumpectomy one week ago today! I am Her2Nu positive. My tumor was stage one and my doctor has suggested radiation and herceptin. I have to say I am trying to hold it together but am really scared! My lymph nodes are negative.

[chicagoetc]

Hi Janeen. Sorry to hear of your recent news. Not knowing what this means and facing something like cancer is scary. The good part is that your are Her2 positive. This would have been worse news before, but with the introduction of Herceptin, things have changed for the better (significantly so). Be good to yourself. And I'm glad you found this website. Stick around. I think you will find the individuals on these discussion boards both caring and helpful.

Melanie

[Jackie07]

Welcome Janeen,

Knowlege is power. I am so glad you are joining us at the very beginning of your journey. There are many survivors here and also many survivors who are not members of this Forum.

Her2 has actually a better prognosis now because of Herceptin. Just watch for your heart. Try to exercise if you can to keep your heart strong. I had to stop my Herceptin treatment at 22 weeks because of my heart valve defect from birth. But I am doing well.

Welcome again. You can use the search button on the gold bar on top to find postings by topic. When you get a chance, you might also want to go to User PC to put in your diagnosis and treatment history in your signature. That kind of helps members to know each other better -
not that we are only reflected by our cancer and
treatment, but it helps to find support from people who are having similar experience.

[Tammy]

Thank you swimangel, I am not sure what ER OR PR is.. All I know is that CANCER SUCKS.. But we can do one of two things, Fight or not fight. I have been thru this once before, Granted not like this, But WILL get thru this again.. I do have my moments were I cry, Actually its more like a few days, then its like I get this new found strength that lifts me.. I know I am not making since and am jumping around.. Theres just so much I have been wanting to talk about..And not really having anyne to talk to..Again I am glad I found this site.

I think the thing I have the most trouble with is just trying to live a normal life knowing I have cancer. Any input on this?

[Jackie07]

Sorry I am butting in. That reminded me of what Doc Holliday said to Wyatt Earb(?) in the movie 'Tombstone'. It goes:

"Wyatt, there is no 'normal life'; there is just 'life'."

In Buddhism, life has a natural cycle of 4 stages - birth, aging, illness, death. No one is immune to it.

Jesus said that we have sufferings in this world, but will have peace in Him, because He has already conquered the world.

These were just some results of my 'free association' from your posting. Hope you are feeling better soon.
Remember you have a league of women (and a few men)here rooting for you. We will fight this thing together!

ps. I would assume you are estrogen receptor negative since you did not have Tamoxifen or similar anti-estrogen treatment either time.

[Gerri]

Tammy and Janeen,

Welcome to our board. Hopefully after all of this settles in you will be able to breathe a little bit easier. Yes, CANCER SUCKS big time, but you can still live a relatively normal life. Many of us are fortunate enough to tolerate treatment well and continue to work. Everyone is different and you should do what is best for you.

Tammy: ER/PR is Estrogen/Progesterone. If you test positive for one or both you most likely will be put on an anti-hormonal drug - Tamoxifen if you are pre-menopausal or an Aromatase Inhibitor (Arimidex, Aromasin or Femara) if you are post menopausal.

So ladies, take a deep breath and get ready to face this demon. Post your questions on the 'her2group forum' to get the most input. You will find that you really are not alone - we are all in this fight together.

You can do this, you really can.

All my best,

[Catherine]

Gerri is right on. You can fight this fight. We are here to help you.

Catherine

[kindertender]

Thank you so much Chicago and Jackie! I already feel better!
I used to visit CURVES at 3 to 4 times a week - not able to pull on machines for awhile so I am walking. Just a block day after my surgery - but today is a week and I walked my dog a mile!
Thank you for the info on Herceptin! Some of the side effects I had read about were making me very cautious. However, guess I will find out more when I have my first appointment with the oncologist on the 29. I have been blessed to have Dr. Ernie Bodai as my surgeon. Thank God for this website!

[Sheila]

Tammy and Janeen
You have gotten great advice from many here...there is always someone on this board who has been there before...and so much wisdom and love....we all have a bond, and we are all here to help each other. Tammy, it is hard to have a recurrence, but some of us do...we just begin the fight again....I have been fighting for a while, and plan to keep kicking butt.....yes, my life has changed with treatments, appts. etc....but i am still living and enjoying every single day, and plan to keep on doing just that.....There is Life after Cancer, and even During Cancer....I am living it!!!!!!!!!!!

[gin-tx]

You are so fortunate to have negative lymph nodes. It sounds like you have a very wise dr who is making good suggestions. I only had radiation in 1995 for a lumpectamy with no other treatment, it returned 11 yrs later and much worse. I don't think Herceptin was around then, I wish it had been. Best of luck and let me know how you progress.

ginkott1@aol.com

[Tammy]

Sheila, Gerri, And Jackie07

Thank you for replying.. It is very nice to have people to talk to.. I have not been put on any meds after Chemo.. All I know is I was told my first cancer was not estrogen dependent(?) I was told not to take anything with estrogen in it..

And as for living life.. I consider myself a strong person.. 3 years ago I got thru cancer. I lived my life just like anyone else.. And thats what I am doing this time.. Although this time my cancer is different.. I know I will be battleing this the rest of my life now.. But thats okay.. It could be worse.. I have been dating a great man for 7 months now.. I told him about my previous cancer upfront and also told him there was a chance of it coming back.. Little did I know it would be this soon in our relationship.. He has stood by my side thru all of this.. And I love him dearly.. I just had to share that.. Back to life.. There is not a day that goes by that I dont think about the cancer.. I look around at other people and how they are living there lives.. (There are so many hateful people out there) So I have decided to tr and be a positive person.. Regardless of how I feel.. Not just for me but for others.. Does that make sense??..

Okay question.. I did not get Chemo last Wednesday, But I get Herceptin every Wed.. Friday when I saw the Oncologist he said I now was Anemic.. And that I have lost some blood.. Which really explains alot..So now I have to wait to see the blood work this Wed to see (hopefully) get treatment.. Anybody know more about this??

[Jackie07]

How wonderful that you have a good friend now that can lend you support and provide the very much needed love in this journey! My hubby already has 'donor fatigue' after 20 years dealing with my numerous surgeries and job losses... (But he can't leave, because I'd already put the "Chinese voodo" on him when we first got married :)

As far as the anemia goes, your doctor should know what to give you to boost up your blood count. I believe I had several booster shots related to blood (Neulesta?). The one I remembered most is the shots for my white blood count, that one made my lower legs very, very heavy. But it worked, I never had to stop treatment because of my blood work.

So, don't worry too much. Just ask your doctor about it if it is not offered to you soon. (It could also be due to your chemo schedule. Are you on chemo every three weeks and Herceptin every week?)

[Tammy]

Jackie07

I am on Chemo 2 weeks on 1 week off and Herceptin every week... I will get thru this and with peeps like you to help me and encourage thats helpful.. Thank you.

[TRIPLE THE LOVE]

I Am New To This Forum . I Have Been Reading And Being Inspired By All Of Your Questions And Stories

I Have Been Feeling Great Tolerating Chemo Prettygood

My History Is As Follows

Just Turned 40- Mother Of 7 Year Old Triplets And Been Dx With Stage 2 Breast Cancer Her+ Esr+
Carbo/ Taxtere/hercept. Every 3 Weeks Going For Cycle 3 This Fri. - Feeling Preey Good

After The First Treatment A Bump On My Back (which Was Ct Twice And R/o As A Fatty Tumor Or Lypoma By 3 Drs, One Being My Oncologist. Was Shirnking. My Oncologist Came To My Treat Ment And Said It Was Great That It Was Shirking And The Radiologist Said It Did't Have A Cancerous Look To It Great Right Until The Following Week Where She Changed Her Tune. After Lookinf At Again She Is Now Saying That It Could Be Which In Her Next Breath Said It Put Me At Late Stage 3 Or Early Stage 4 The Mass Is Beteween My Skin And My Chest Wall You Can Feel It And See On My Back On The Ct It Did Mention Erosion Of The Rib Where It Is Located - By The Way Bone Scan Thank God Is Negative-
She Is Now Wanting To Bx My Rib And If The Mass Is Still There The Mass - My Question Is How Can Somthing That Been Looked At So Much Now Be Come Something So Serious And How Can A Dr State That And Not Expect A Pt To Be Upset Which She Was Shocked That I Got Upset At The News She Said I Should Be Happy That It Schrinling Which I Am Don't Get Me Wrong But I Am So Confused Any Insight Please Let Me Know
<!-- / message -->

[DanaRT]

Dear Triple the Love,
I would be upset too if the spot had been looked at repeatedly and you were told not to worry. However, it seems that your doctors are paying close attention. The negative bone scan is a good thing. It is great that it's shrinking and doesn't look like cancer to them. Sounds to me that they want to be on the safe side.
I will be including you in my prayers for good news.
Glad you're feeling good while on treatment with the TCH. Hang in there.
Many hugs,
Dana

[TRIPLE THE LOVE]

One Mor Question I Just Wanted To Know If You Ever Heard Of A Fatty Mases Shirinking . I Mean If It Is Shirnking Should I Believe It Just Could Be Cancerous Or Things Like A Lypoma Can Get Smaller Too .

[DanaRT]

Dear Triple,
I don't know much about fatty masses. I suggest you post your questions on the Her2group section of this forum. It gets the most activity and you'll get a lot of really good information.
Best wishes,
Dana

[zenaidamartin]

Hello everyone,
I'm new to the board and I'm looking for answers. I was diagnosed with Advance Breast Cancer May 28, 2008. I am HER2 positive and estrogen reseptor positive and bi-laterial (both breast). I'm not sure how many nodes are positive but I know there are some because I'm a stage 4 with cancer in my bones. I'm taking tamoxifen, zometa, herceptin and lupron shots. I don't have any history of breast cancer in my family and yes I have had a the BRAC test that came back negative. I am still in shock but now I'm angry because I hate CANCER. I have not had any surgery yet but I have been told that I will have to lose both my breast because I have tumors in both. I just can't wrap my mind around this. I can't figure out where I went wrong or why my OB doctor didn't catch this in time. I have always had all my annuals with my OB doctor which by the way I've been to for over 10 years. Now I have bills coming in that we can't cover and this is happening because our medical insurance only covers 80% until we meet our deductible of 11, 000 dollars. Then the insurance will pay 100% but that doesn't help because if we don't start paying these bills I'm afraid they will make me go to the county hospital for treatment. Which is not a good thing because I won't get the right treatment. I just find this whole thing so frustrating and then I go to websites to find someone that can relate only to find women like myself dealing with this monster and no one out there is hearing us. It's like we women with breast cancer are just cattle and the doctors don't know what to say or what to do but put us HER2's on herceptin. Then the doctor tells me that I will be on meds for the rest of my life. What does that mean, if I give up and don't want the meds will I die? Or, what if my tumors become immune to the meds what happens then? I just don't know how to take this. I have 6 children and 5 grandchildren that I want to see grow up. I am 47 years old and don't want to die this way.

I'm sorry I just have all this build up in me that I just have to tell someone. I don't blame you if you don't want to hear me but I just think that something needs to be done to find a cure for all breast cancer. I have read all of your posts and my heart just cries for all of us because we are fighting just to live with this awful disease.

I know take a deep breath and I do and I am living my life as best as I can but I still think about it when I'm holding my 3 year old daughter. I love that all of you are strong and you stay positive and you should and I hope to stay strong after 2 years of all this but reality is I don't know if I can.

Well, I have my faith and I'm working on it. God knows I am.
Thank you for listening.

[juanita]

that's what we're here for. i know i've had to vent several times. i know it's a struggle, i'm in the same boat. but i just keep on keeping on. i think i'm up to my eyeballs in medical bills. good luck with treatments and surgery. keep us informed!

[kindertender]

This Thursday I will be receiving my 2nd TCH treatment. I cannot wait to get this over with- 4 more to go! I was so tired yesterday - even though it was 3 weeks since last treatment. I came home immediately and took a nap. I felt as though I was catching a flu bug. I guess I was just overly tired. Thank goodness for this website! I may be going part time in the near future. My little kinders will not be too happy - but I will not be any good to them either if I get sick!

Peace and Love in Christ,

Janeen

[BonnieR]

Janeen, those little ones could easily give you a bug so you need to take precautions around them. We are so much more suseptible when on chemo. Fatigue is certainly one of the side effects. I admire all of you folks that are working while in treatment
Good for you, only 4 to go!!

[evie]

Hi Christine and everyone on the site,
I'm new to the site, but not BC. Was first diagnosed almost 10 years ago with recurrence, secondary c and mets, a year and a half ago. Am currently NED, wahooo! Trying to be more of an advocate these days. Is there some info needed to file for newcomers?
Thanks for this site,
Cheers from Evie in Tucson

[DianneS]

Hi Evie,

I'm glad to hear you are NED! That is wonderful.
Are you her2 positive?

I am trying to deal with the diagnosis I was given in August 2008. Life hasn't been the same since...guess it won't be! I just finished 5.5 treatments of Taxotere, Carboplatin and am still doing Herceptin until November. So I am done with the chemo part, thank God. I am checking out alternative medicine (herbs) and Chinese meds as well as a mild stretching exercise that is an immune booster and all around good for you called Qi-Gong (pronounced chi-gong) kind of like Tai Chi but different, it's been around for thousands of years in China. Apparently they have terminally ill cancer patients in China who were given a few months to live - 20+ years ago and these people are still around. The cancer library had a few videos about it and I'm impressed. I think if we keep our immune systems in top notch condition esp. after chemo it might help to avoid recurrence....don't know but giving it a shot. I don't think Western medicine has all the answers and I"m glad to see that many Canadian MD's are working with Chinese doctors to find cures for so many diseases inclu cancer. I know the US has these Qi-Gong centres so it might be worth checking out, once you are done with chemo?

Best to all
Diannes

[irishtrish317]

Hi there:
I came upon your site today while researching information on Herceptin & pregnancy. I was diagnosed w/ BC last July and also found that I am HER2+ along with estrogen & progesterone receptive+ I finished up my chemo in February. Now doing radiation treatment, but also still doing Herceptin treatments until November. I'm hoping to find out more about HER2 on this site and the effects the treatment may have on fertility. I'm 34 years old with no children yet. Been through alot of fertility treatments with no successful outcome and then the cancer came. Anyway, planning to go back to fertility doctor and find out what my options. Looking to see if there are any other HER2+ BC survivors in the same boat. Looking forward to meeting new people and filling my mind with lots of info.
Thanks for this site.

[beverlyhr]

Help! I'm experiencing infusion port rejection and still have 10 more infusions of Herceptin thru Dec. of this year. Is there any other way to get Herceptin into your system? My veins are tiny and unusable. beverlyhr

[Jackie07]

Hi Beverly,

I would think your doctors will know the answer. My right arm is useless because of the loss of 11 lymph nodes. My left arm is bad because of the paralysis after my brain surgery - it's functioning after rehab, but recently all the veins were not working when drawing blood; last time they had to prick my finger tip to squeeze some blood out.

I am sure there are other places where they can do the chemo - I believe reading somewhere one time that one
lady went through chemo without a port at all. The technician was able to access my big vein on the inside wrist area during my last surgical procedure at the end of March.

[candy14510]

Hi all, it took me a day of crying and staring at this site, before I could post.....just wanted to get this under my belt! I am HER2+/ER-/PR-/stage IIb/grade 3/4.1cm/1 node...with micro cancer 0.06cm had bi-lat with DIEP 3 weeks ago and starting Chemo June 12th. Just wanted to take my first step....got this website from breastcancer.org another great support system of fellow sisters....Thanks for all the future support I know you will all give me!!!

[flynny]

Hi Candy, welcome to the club you never thought you would be in! The women AND men on here are so warm and knowledgeable. You are in good hands.

[juanita]

hi candy! we all understand the tears! welcome to the family and you have found a really great group of people. i wish i'd known about them while i was first diagnosed.

[Tservo]

...With an Invasive Ductal Carcinoma. So far, all we know is ER+3, PR +1 to +2. I think they're running the FISH test, but I don't know yet. We're supposed to meet with the surgeon sometime next week.

So far, I'm trying to stay positive, but my wife finds it annoying. (There are other things I do that she finds annoying, but I'm pretty sure that in this case, it's my ebullient optimism :) ) Does anybody have any advice as to how I can try and keep her spirits up without sounding like I'm repeating "it's okay" and "we'll get through this" like third-grader going over multiplication tables by rote? I'll admit that I missed the bus when it comes to being sensitive and in touch with her feelings: it's not that I don't care, but it's like I've studied for a French test, but the teacher is speaking Swahili. I'm a guy; if she needs her oil changed or a spider killed, I'm on it. Trying to find that perfect combination of words to ease her fears? Not so good.
Her biggest issue right now is not having a plan. Everybody we've talked to just keeps saying we'll have to talk to Dr. X or Dr. Y to find out, but we haven't been able to meet these elusive characters. Yet. One thing about my wife; she doesn't like winging it. If Plan A falls through, she'd just as soon not bother with it. I'm more adaptable (another trait she finds annoying), but I don't necessarily want to go blindly into this either.
I guess I'm just a little lost. Any ideas?

[Laurel]

Tservo,

I think you are the detective on your cancer fighting team. Some people who are given a diagnosis are comforted and therefore, content to simply follow and accept their physician's recommendations. While trust in one's medical care is a positive thing, for many blind trust is impossible. I fall into the later category. For me to fight this foe well, I need to know all I can about the enemy. My G.P. knows relatively nothing about breast cancer, let alone the specifics of triple positive breast cancer! I appreciated her care and have no intention of changing my general Practitioner doc., however I know that I will have to follow this disease for the remainder of my life to stay versed in all new treatments and findings. I now see my Onc. every 3 months. She is competent and well versed on my diagnosis, but she follows multiple types of cancer and does not follow any of the studies being conducted on diet and supplements. Being your own advocate, or having someone in your corner willing to advocate and research for you is absolutely essential to long term survivability in my opinion.

Getting the answers to your test results and formulating a treatment plan is a process. It comes at you fast, so be prepared. Without all the information, such as whether your wife's tumor is Her2 +, you can only do so much prep work. Know this: the surgeon will know when he/she meets with you the status of your wife's tumor based upon lab results. She will recommend a lumpectomy or mastectomy. Then do your homework. You will meet next with an oncologist. Pieces of the puzzle begin to fall into place and your wife will have her plan of action. You, on the other hand, will have to hit the keyboard to research, research, research to make certain the plan is the best one. At the end of the day the decision to do chemo, etc. will fall to your wife.

One more thought: I recall that initially everyone would say things such as, "if anyone can beat this you will!" RaRaRa. I was reading about Her2 and freaking out over the stats, mostly pre-Herceptin stats I might add. Very scary. What I wanted was the promise that they would PRAY fervently for my ultimate healing and remission. I trusted less in medical science than in a higher power. It is quite difficult for anyone, including husbands and dear friends, to say or do the right things. There are no absolute right things, and the person dx'd doesn't even know what she wants to hear, really.

If you are not researching this stuff you can be less afraid initially, but less able to make informed decisions when needed. It is a very tumultuous time for the person newly dx'd with cancer and for those who love them. Hang in there. I think your wife is very fortunate to have you in her corner!

[Elke]

Hello, I'm new to this site and have found reading the posts makes me feel less alone and more in control through the knowledge and experiences of all you wonderful people!

[Tservo]

Thanks for the response to my earlier post. I'm trying to do as much research as I can, but the Internet is actually a bit of a bad thing in that respect as there is so much out there that it's hard to separate what is factual from what is someone's opinion.

That actually leads me to my next question; one that I admit is actually kind of hard to talk about; me being a man amongst all you incredible women! I made the mistake of trying to find some before and after pictures of breast reconstructions since my wife has been advised to have a bilateral mastectomy. What I found was quite frankly scary. It seemed like every site I found that had pictures was actually showing victims of tragic industrial accidents. My poor girl wound up crying hysterically and wondering if I would ever want to touch her again. I realize that her girls aren't going to look like they do now post-reconstruction; but she is really scared now and I am at a complete loss as to how to make her feel better.

I think the problem is that most of the sites out there tend to show women who experienced cancer after they had menopause. My wife isn't even 30 yet; in fact that's the reason that our surgeon recommended the bilateral. She said that implants would only last 10-15 years so my wife would have to go back at least twice to have them replaced. Since our meeting, I've also discovered that they have to expand the skin to at least a cup size larger than the implant you want to have to give enough room. Since my wife is already a DD, the surgeon didn't think that it would be possible to leave enough skin to give her that kind of room.

So I guess what I'm looking for is to find out if anybody who has gone through a bilateral can shed some light on the process. Is it normal for the plastic surgeons to have before/after photos from their own practice that they will show you? Do they have some sort of catalog where you can pick-a-pair? Right now we are planning to not delay the reconstruction; my wife has told me she can't leave the hospital without her tatas.

[Jackie07]

Welcome, CandyL and Elke:

It was very scary to have a cancer diagnosis. In my case, because I'd had a couple of brain surgeries before, I did not feel the same kind of shock as others. But I did remember when I was first told about my huge brain tumor. At first, I was very excited - all the wrongs in my life had now got an explanation (problem in sleeping, weight loss, headaches, skin problems...) but once it got closer to the surgery date, I became a little panic because the possibility of the surgery outcome was 'death' (my first brain surgery.)

So breast cancer surgery were really a piece of cake for me. And the chemos were not as bad as I had expected, especially the 2nd round in 2007 when more antiemetic medicine were available. I gained quite a few pounds after chemo.

However, it is still a sort of long distance run. And because my doctors and the mammagram dept. missed my recurrence for four years, I always like to share it with new comers that we've got to be vigilant ourselves. Gain as much knowledge as you can because we are the best diagnostician for our own illnesses.

This is a wonderful support group. Welcome again.

[Karen Wheel]

I'm new to this too - not stage IV but, lucky for me they caught my tumor before it spread to the lymph nodes - (they took three to biopsy) but... I am doing the herceptin (I'm american but live in Sardegna Italy) and they do that right along with the chemo (did that too! for 9 weeks) and now only Herceptin every 21 days... and starting radiation this week for 5 weeks. I have had an allergic reaction every time with the herceptin (5 times I think now) and it takes me an entire day at the day hospital with all the extra antihisamines and cortizone .... and my right eye weeps all the time ... most of the 21 day cycle... but I'm hanging in there with the treatment and think I'll finish it out if I don't develop any other problems and if my heart altrasounds are still good. IN addition I am implementing a strict eating and diet change and have done a 180 in my thinking of how I am going to "EAT TO LIVE!" ..... if you want more information there is a link on this site that goes over alternative cures - but I have a load of information (if you would like I can pass it on) but the base is PH of the body - and eating mostly raw veg and fruit. A great book to get started is "The Cancer Battleplan" by Anne E. Frahm and David J. Frahm. Easy read and really makes a hole lot of sense to me.

[Karen Wheel]

Not sure if you are still on this site - and reading the answers - but I know that I have read 3 books (at this point) in my 6 month quest of finding a cure for this beast! I have Her-2 and had surgery - they took about 1/2 of the right breast - and lucky no lymph nodes were involved... however I think you could cure yourself and the tumors with diet and nutrition - please go and get the book "Cancer Battle Plan" its easy to read - and outlines an excellent way to cure yourself _TOTALLY - of cancer. I am implementing this idea and also doing the conventional treatment (surgery, chemo, herceptin and radiation) but I am not wanting to do the Hormone Therapy (jury for me is still out on that one!) but ... if you see this note - I hope it helps you!!! I have loads of information I have been collecting, if you want some - please reply back and give me your email... Karen

[Dora Mendoza]

thanks for this info. I look forward in reviewing the book you are recommending.

[margiermc]

Hi - I am new, my onc. in Washington, Dr. Salazar gave me this website, looks like what a I need. I am on every 3 wk herceptin, going for a bc vaccine, I am Ned for 7 mon. but need more scans, blood work, I was DCIS and never new I needed to go throught all of this - I like to make some friends, Margie

[Sandra in GA]

Hi, I am also new to this site. It seems to be very full of wisdom for us HER2+ sisters. I have read so many informative postings. It is one year last month since I found my tumor. It had been less than 1 year since my last mamogram. I am taking this one day, one treatment at a time and I am doing well. I will complete my Herceptin and Tykerb one year treatment in Nov.

Greetings to all!!
______________________________________
Diagonosed: August 2008 ERPR- HER2+ (3+), 3 cm tumor Stage III with lymphatic and vascular invasion, 21/21 nodes positive. No spread to other areas of the body
Surgery: Double mastectomy R-Prophylactic with reconstruction of R brst begun; 21 lymph nodes removed from left arm
Chemo: A/C began in Sept. 2008 every other week X's 4
Nov. 2009 began Tykerb daily along with Taxol and Herceptin given weekly for 12 weeks (this stretched to 14 weeks because of low WBC and temp on two occasions).
Now taking Herceptin once every 3 weeks and daily oral Tykerb until middle of Nov.

[chicagoetc]

Welcome!

Melanie

[dbee]

Hi from Down under,
I found this forum while looking at HER2 info on the internet. I have been having dreadful muscle and bone pain since finishing chemo(AC and Taxol) and was looking for information on treatment to allevieate these symptoms, so any suggestions would be helpful. thanks for this forum, its great to read about others journeys and experiences.

[Jackie07]

Welcome, Dora, Margie, Sandra, and dbee:

There is a 'search' butoon on the gold bar - type in a key term and you will be able to pull the old postings on the subject.

Be sure to register - that way, you will be able to post and keep track of your subscribed threads.

'User CP' (also on the gold bar) has a lot of useful gadgets to save time and 'money' (just kidding!) Be sure to edit your 'signature' - easier for other members to know your diagnosis and treatment so they can respond in a more helpful way.

We are all on the same boat - a huge cruise line - with lots, lots of information as well as 'entertainment' going 24-hour non-stop. And Joe is being honest when he says that this is 'the most compassionate, most informative, most... website.' Welcome again.

[Sandra in GA]

Jackie07,
Thank you so much for the welcome and the information about "user CP". This had been most helpful!
Sandra

[WolverineFan]

Hello,

I am new to this site, and am trying to learn my way around. I was diagnosed in March with a 3.6 DCIS tumor, and had a mastectomy on May 7th. The pathology report revealed that rather than one tumor, there were actually two tumors side by side, even sharing the same wall, but the make up of each tumor was very different. The DCIS tumor measured 2.8 cm and was ER- and PR-, but the invasive tumor was 1.1 cm, ER+ 90% and PR+ 95%, with HER2+3. Please note that the size grew 0.3 cm in just five short weeks. I started chemo (Taxotere, Carbo, and Herceptin) in June and am due for my first "post" Herceptin MUGA before my next treatment. I am curious if there are others that had two tumors with completely different make ups, what their doctors say about it and what their treatment entails. Additionally, I am curious if I should expect some decrease in the flow of blood through the chambers as a result of the Herceptin in this first post MUGA scan. Just a little nervous about it all. I have talked to my doctors about my concerns, but they don't like talking statistics, whereas, I want to get a handle on what I am up against. Thanks so much for your help.

[BonnieR]

Dear WolverineFan, glad you found this site. I can say that I had echocardiograms periodically during treatment and never had any compromise of heart function. I hope that helps relieve some anxiety. I am sure others will chime in to comment on your other questions.
Keep the faith.

[Jackie07]

Hi, welcome to the Her2 Support Group.

Many of us have our treatment history listed in our 'Signature' which automatically appears each time when we post. To do that, go to User CP, and then click on 'Signature'.

As you glance through many of the BC journeys posted, you will find a few that have had decreased heart functions. At least one of our members improved her MUGA score by taking 'Enalarpria' (not sure about the spelling) and exercising. I had to quit Herceptin at 22 weeks because of the problem. But it's mostly because I've already had a genetic defect in my heart valve and a weakened left side from previous brain tumor surgeries (couldn't exercise as much as I'd liked to.)

'Knowlege is power'. You will do very well on this journey by actively seeking out information - exactly what you are doing now.

Welcome again.

[Catherine]

Hi Wolverine Fan, This newcomers page seems to have 12 plus pages, so I hope you find our replies. I had one year of Herceptin and finished it Dec 07. My doctor ordered a muga before Herceptin started, then 3-4 times during the year that I was getting H. I will admit that even tho my test results were fine, I think my heart felt a little slowed down from the H. For me exercise is helping me build back up. I am 61 years old, so that is an added challenge. I am happy to report that all the treatment they threw at me seemed to work and I am happily NED. My tumors were mulitfocal, I guess I just figured they were all the same er-, pr- and HER2 +. Actually my doctor likes to talk statistics. Good luck with all your treatments. Check in here often as there are a lot of seasoned, knowledgeable and wonderful people here on this site.

Hugs, Catherine

[Sandra in GA]

Hi Wolverine Fan,
I am in the ninth month of Herceptin treatments along with Tykerb. I am being monitored every three months with an echo cardiogram. The last one was done a week ago and my heart function has actually improved slightly. I have been trying to walk or ride a stationary bike this past month. I think that has helped.

The quote in my signature from Winston Churchill came from a get well card I received during my journey last August. Even though I have many others, that is the one I keep pulling out when the going gets tough. You can't stop, you have to dig deep and keep going so you can get out of the bad times.

Take care.
Sandra

[WolverineFan]

Thank you all for your responses! I am feeling better and believe this will be an excellent site for support. I've had several dizzy spells a couple of days after my Herceptin treatment and one fainting incident, so that's why I a little nervous, but hope that is all behind me. I will keep you posted. Thanks again!!

[WolverineFan]

Hi,

I have a question for women who've had a mastectomy and followed with reconstruction. I am still on chemo and Herceptin, but will be finishing with chemo in October. I had an expander put in after my mastectomy and are nearly to the point of having it filled. The next step once full, will be to replace the expander with an implant. Is it safe to have this surgery while still taking Herceptin? With all the possible side effects to the heart, I was just curious how safe it is. Any feedback would be great. Thanks so much!

[Laurel]

Hello, WolverineFan! I am a Nittany Lion fan! I had reconstruction with bilat expanders, followed by bilat silicone implants. My surgeries were done while on Herceptin with no complications whatsoever. In both surgeries I was given Michael Jackson's propofol for anesthesia which I tolerate very well.

I am betting you will sail through your reconstruction as well. Good luck!

[Sandra in GA]

Hello WolverineFan,
I too am in mist of reconstruction. The expander was put in the right breast area during my original surgery. They did not put the left one in because of my need for radiation on that side because of the extensive node involvement. They went ahead and filled the right side during my chemo. It is now ready to be replaced, but the plan is to put the expander in the left side but since I am taking Herceptin AND lapatinib (Tykerb) I have to wait until I finish the lapatinib because they don't know how it will affect the healing process. I was told down at Mayo in Jacksonville, FL that if I were only taking Herceptin, they could have gone ahead with the surgery. I am finishing everything Nov. 18th and am planning to proceed the first of the year. The only problem I am having now is that I have just learned that the chemo or Decodron has made my very small cataracts grow, so now I have to have those removed. And, I have decided that eyes come before boobs, so I may have to push mi reconstruction job back more. Oh well, at least I am here and doing well!! Good luck!!
Sandra

[WolverineFan]

Oh Sandra,

Thanks so much for the information and telling your story, but I hate to hear that you have to have your eyes worked on, on top of everything else. Yes, vision before boobs is a must! You will be in my prayers!! Take care and keep us posted!!

[Louise43]

My name is louise and my friend ilona who is 53 has been diagnosed with a her 2 + ductal carcinoma which was 2.5 cm and is now 6 cm with infected lymph nodes around 20 one one side and the other side is starting to get infected. She was with epping hospital essex but wasnt happy and went eventually to the marsden. She is about to undergo herceptin and chemo and will find out the regime on wednesday. She is worried is going to die and has asked me to askthe doc but i dont really want to do that. I have a lap top and she dosent have one at the moment that is why i amdoing this for her. This is a great web site and she i am sure would welcome your support. She is not getting much support at present from her 3 sisters and her boyfriend who an older man also isnt offering much support.

Any advice would be great.

Best wishes to all louisex

[DanaRT]

Louise,

You're a terrific friend to Ilona and I am sure she is very thankful for you. It's great you can offer support and research various aspects of what it is like to survive breast cancer for your friend.

You will get a lot of advice on this site but you might get even more answers and support if you begin a new thread and post it under the "her2 group". It seems to get the most traffic.

Continue to reassure Ilona that research and treatment is to improving daily. Ask her to have faith in her treatment however allow her the "down" moments.

My family, friends, support, cards and letters were like oxygen to me during treatment and follow up.

Keep encouraging Ilona to push forward. Treatment seems like a long dark scary tunnel but in reality it is doable and offers a lot of hope.

There is a book by Barbara Delinsky called Uplift. A great book about hope, offers ideas about tolerating treatment and what it is to be a survivor.

Best wishes to you and Ilona.

[Louise43]

Hi Dana,

thank you for your post the other day. I went to the Royal Marsden Cancer Hospital in London yesterday with Ilona. They say her cancer hasnt spread anywhere else at present. It has started to infect one side of the lymph nodes but it is still at stage 2 Her2 + strong. Im learning as I go along but that is what they told her. She has done loads of research on this but is scared to death like everyone else Im sure.

They want her to go on Chemo for 4 four cycles on one treatment then stop for three weeks and then start another along with herceptin. She sayingshe wants the operation first but she will still have to have chemo which would be even more harsh. We went to see the Chemo Suite yesterday it had lots of patients on their chemo looking very ill. It was quite scarey.

I just would like to know your thoughts on how do you make the decision of whether to have Chemo first or Surgery.

She thinks she will die on the Chemo.

She is now saying everyone is interferring but if I could help it would be good.

Best wishes
Louise Edwards

[schoolteacher]

Louise,

Please let her know that I had neo-adjuvant chemo and herceptin before my surgery. It helped to shrink the tumors. I could feel the medicine doing the work. The herceptin really helped.

I know not having the surgery first is a hard thing to do. Please let me know if I can help in any way.

Amelia

[Ilona]

Hi Amelia,

Thanks for your reply. I cant remember the names of her drugs she is going to have one for four cycles then another which will be done with Herceptin. She is worried about side effects and she has a long way to travel too and from the hospital. Im worried she willbe ill on the train coming home.

What are the names of the drugs you were on. What are the common side effects. I know there is lot of sickness

Best Regards
Louise

[Louise43]

Hi Amelia,
Have just send you a reply but note sure whether you have received it. She is afraid of side effects as she has a long way to travel too and from hospital

[Ilona]

Dear Amelia,

Ilona wants to know did you have a lumpectomy or mastectomy at the end and which chemo drugs were you on. Did you loose hair, how long was your treatment prior to surgery and did you have severe side effects and could you work. She did ask your age she is 53 but I think a lot of women in our age group get this but not all.

Sorry to bobarde you with all those questions.

Ilona is now going to going the website so I will let her take over tomorrow. i have a computer at home but she dosent so she has to go the library.

Best Wishes
Louise
England