Hi New members!!

[michele u]

There has been alot of new people posting on here lately. That's awesome!! Let's start a thread here with all the new gals posting their stories!! I'm Micheleu. I was dx in 2003. Stage 3 with 34 pos nodes. er/pr neg Her2 3+ FISH 10. I took AC then 12 Taxol. Then i took Herceptin for a year. Now i'm taking the vaccine trial in Seattle. I was 39 at dx. Now i'm 41!!!! I have 3 children 1 husband 3 dogs. I live in Nebraska. I emailed Dr. Salazar from Seattle today with a question about maybe taking a second year of Herceptin. I will let everyone know when she emails me back

[Joe]

Michelle,

I am planning a "Newcomers Club" message board for newly diagnosed bc patients.

My only request is that only "newcomers" start new threads. The more experienced among us can answer posts, but not start new ones.

Looking for feedback. How does everyone feel about this.

Joe

[Esther]

That sounds like a good idea Joe. Newbies tend to have different questions and concerns to deal with.

[RhondaH]

I think that's a GREAT idea, but how would you define newcomers?


Rhonda Hoffman

PS, also a crazy question, but I found some flaxseed recipes I would like to share ( I know there was a discussion on this before) and I got to thinking if there could be (if this is even possible or if anyone would be interested) a recipe section for us to share "alternative" medicine recipes (ie, flax, fish, vegetables or de"sserts" for those days we just need to indulge...just a thought.

[kristen]

I like it Joe. What I don't understand is why no one uses the chat room. Is there anyway you can flag here posting that you want someone to come to the chat room to talk? Thanks. Great idea.

[Maryanne]

Thats is so sweet of you , Micheleu,
I am relatively new to this site and am still finding my way around. My name is Maryanne, was diagnosed last December 04 with bc. ER/PR negative, Her2 +3, node negative. Had lumpectomy in January. Did 4 dose dense A/C followed by 4 dose dense Taxol with Herceptin, then 30 rads. Am in a trial at Sloane's here in N.Y. and will continue with Herceptin for a total of one year. ( I also asked if I could stay on longer since I am er/pr neg and was told herceptin is not a preventative drug????? why not????) I am divorced with 2 children, a daughter at UCLA and a son hoping to follow her next September.....if he ever gets his applications finished! New to breast cancer but not to cancer, my son had Hodgkins last year, doing great....finished his chemo and radiation just in time for my being diagnosed.
Thank you all for making this a great site!
p.s. forgot to mention our dear cocker spaniel who is no longer here....also was diagnosed last year with a melanoma. 2004 just wasnt my year!

[jsattaw]

Hi - new to Her2 as well. First diagnosed in '98 at 37 years old-- ER/PR+ but they weren't testing for Her2. Was node negative and did a lumpectomy followed by radiation. Diagnosed with a recurrence in May '05 -- no nodes (Yea!) but am Her2Neu+. I had a mastectomy with reconstruction in July, 4 treatments of Taxol and had my first Herceptin treatment 2 weeks ago. I am also scheduled for a hysterectomy on Nov. 3rd. I'm married with a son who will be 5 on Nov. 2nd. Great site!

Jill

[Unregistered]

My name is, Karen and I live in California. I was diagnosed, January, 05 with a 1.3cm, er/pr+, node negative, grade3, Her2+++ tumor. I completed, dose dense, June 29th and rads in September. I started Herceptin in July and just had my 6th treatment on Monday. I will be on Herceptin for one year (treated every three weeks). I had asked for Herceptin back in May when I started Taxol, but my onc told me I didn't need it. I went and got 2nd and 3rd opinions and when I went back to talk to my onc about it, he had, had a change of heart.

Thanks for starting this thread, Michele!

Karen W.

[jojo]

Pardon me for going off-track -- I am not a newbie here, but I have noticed that there doesn't seem to be many Californians on the boards. I could name maybe 5 ladies, oh, and myself.

Karen W, would you mind telling which part of California you are from? I am located in SF Bay Area.

Welcome to all the newbies! :-) I hope that this site is a big help to you guys.

[Alice]

Hi,

Im a new member. Joined this month. I have been visiting here for a few months and I love this site and the layout. I always find encouragement and a wealth of information here.I have been on other sites and some of them tend to get a bit catty and negative. Not what I need right now!
To JOJO I am in southern california.Temecula area.

[Unregistered]

Hi everyone, don't know if I'm still "new", but I am in So. California so thought I would post here. I was dx 10/04, ER/PR-, Her2+++(15.2 by FISH), Grade 3, 4/20 positive nodes (largest 4cm), Stage 3a. I had mastectomy, 4 A/C, 4 Taxotere, 1 year of Herceptin which will end in December. 33 rads. I was 38 at dx, I have 4 kids who are now 12, 10, 5 and 2. 2 Cats and a whole tub of stick bugs! I am in Ventura County.
Jen

[Unregistered]

Hi Jojo,

I am from the Walnut Creek area. What part of the S.F. Bay area are you from?
We have a great organization over here (maybe you already know of it), called the Wellness Community. They offer cancer patients, support groups, meditation, visualization, etc. and it is all free. Last night an oncologist from UCSF came to update us on all the new treatments for BC. Dinner was also included, which is something I can never resist!

Take Care,

Karen

[mamacze]

Joe and Michele,
This is a great idea; it is such a nice way to welcome all the new folks who are interested and have questions. And Joe, I think your Newcomers Board is a great idea...go for it! You do such a nice job for us.
Love Kim from CT

[MartyZ]

Hello All!

I have been visiting this site for several months since I first suspected that something wasn't quite "right". Unfortunately, I was right. *sigh, smiles*

First dx (at age 37) in May '02, Her2Neu 3+, ER/PR -. 2 tumours, 2.5 & 1.5cm.s, 3 pos. nodes, largest 1cm. Mast. & TramFlap followed by 6 hits FEC over 4 months.
Took loads of vitamins, herbs & homeopathy with Onc's approval.

Baby intermission (read incredible surprise!) after chemo-induced menopause. (Great, now I get to experience all those flashes and such... twice!!) Gave birth to fabulous baby girl on Oct. 27th, '04. Symptoms gaining as baby grew but I assumed they were related to the pregancy & breastfeeding hormones. *shakes head* Silly, silly me....

Aug. '05- Mets dx'd to both lungs (innumerable.. not a word to be found comforting in such diagnoses, is it? *grin* I shouldn't have complained about my "grossly unremarkable" left breast back in '02, should I? *wink*), multiple lymph nodes involved in thorax, 1 large "bar" shaped tumour on pulmonary vena cava & several lymph nodes involved in pelvis. Potential lumbar vertebra as well.
Turned out my former Onc. never tested to see if I showed tumour markers and so my blood tests were always clear and he pronounced me cured. *shrugs*
New Onc. tested and now we know that I need scans to see what is going on...
Next Tues. will be my half way point on weekly Taxol & Herceptin with monthly Zometa chasers. This new Onc. said no to any supplements other than my B-100 and any juicing that I want to do. Also doing meditation, breathing (good stuff! *wink, grin*) and some visualization- though I cannot "find" my cancer any longer. Guess I'll just have to work on visualizing my immune system getting stronger. *smiles*.

Am very excited about CAT & PET scans this coming Monday- I'll glow for Halloween! Making a "Radioactive Girl" costume for the occasion. *grin*
Feeling great, pain is gone, cough down to a few times a day, walking briskly at least every other day for 30-40min. Life is good!

Thank you for welcoming the "newbies".... I have found loads of comfort in reading this board. Am avoiding the negatives in life and seeking out the positives.

Sorry to be so long winded... guess it's good that I don't post much. *smiles*

Be well all and have fun!!
Marty Z in Michigan.

[RhondaH]

So sorry to hear of your dx, STAY POSITIVE and this is a great group to keep you there. Where in Michigan are you? I'm in Grand Rapids though I grew up in Coloma (by Benton Harbor/St. Joe). Take care and I'm sure you'll look adorable on Halloween.

Rhonda Hoffman

[Marty Z]

Oh, thank you Rhonda... don't be sorry, just send good energies/prayers and such if you like. :) Everything is greatly appreciated!

We are in the Hartland/Howell area. We bought a run down farmette after my first round of chemo... now I am raising chooks and having a great time!

Staying positive and knowing all will be well is my main occupation now... I seek out positive stories and take frequent "news fasts".

Thanks again and have a lovely eve'!
Marty

[Val Pfeiffer]

hi maryanne--
I am taking Herceptin as a preventative drug--just started a couple weeks ago. It wasn't suggested by my oncologist--I made that call myself. There isn't anything else out there for ER/PR- Her2 patients, so what other option did I have??!?! As you can probably tell from the article I wrote (see BC article thread above), I have immersed myself in the science of all this and tend to call my own shots. I was stage 3 because of my tumor size and 5/8+ nodes, so it was pretty important to do SOMETHING after my regular treatments.

There is still a lot I don't know, and one of these days I will post some questions i have about treatment options...just haven't had time :-)

Val

[Berta]

I was diagnosed in Nov 05. ER/PR negative Her+++. Node negative. I had a lumpectomy in November, began chemo (cytoxan and epirudicin) in December, finished in March. Then I had 33 rads + 5 boosts. "Completed" treatment in late April. Then I was called back in July to begin Herceptin. So far no problems with the Herceptin. I am 53 years old, live in Indiana, married, have 3 children( all grown but youngest 2 still at home) and two miniature dachsunds. I'm relatively new to this board although, I've been reading it for sometime before I actually joined. I've found this to be extremely helpful especially since I live in a rural area with no cancer support groups. BERTA

[dee]

I do not consider myself "new" to this site (although, yes, I AM her2NEU positive...). Some of us visit regularly - where ELSE can we get the quality info we CRAVE about our health situations - but I seldom post; for at least two reasons that I am prepared to share: I am shy, AND I work a lot; writing for a living leaves me less inclined to want to spend my personal time writing some more.

That said, this site is my super!!!! lifeline. Thanks, Joe, you know who I am. Thanks, everyone else, please keep writing! I need you.

dee

[PatS]

Hi - I don't know that I'm all that new, I've been coming here for a couple of years but mostly lurk. I was diag. on 07/2002 w/stage 3 bc (er/pr+, HER+++). I had neoadjuvant chemo (4A/C followed by 4 taxotere, each three weeks apart), Single mastectomy with expander/implant reconstruction, and 28 rads. I'm currently on Arimidex and NED so far. I'm currently considering starting herceptin.

Pat

[geraldine]

Hi all.
2001 was the year for me. Dx BC grade 3 Her2+++ node positive (18 out of 22) Mastectomy followed by A/C then 8 doseTaxotere (clinical trial) then 30 rads. Was supposed to have reconstruction at time of operation but surgeon said it was too dangerous to go there. Thyroid shut down due to treatment(now rectified by thyroxine) On Tamoxifen for 1 year before tumour appeared below collar bone. Was put on Vinoralbine/Herceptin. Total regression !!!! Now on Herceptin only and awaiting more results to decide if I can have the long awaited reconstruction. Fingers crossed

God Bless you all Geraldine

p.s. Thanx to the people who started the site, it's inspirational x

[TriciaK]

I just want to add my welcome to all the newbies and lurkers. What great stories you all have! It is a fact that cancer patients do much better when they can be part of a support group, and that is what this is, only worldwide. I know Joe and Christine probably get tired of our praise and gratitude, but this site has meant so much to all of us. I can't believe I went through two bouts with BC in the past 20 years without this site. It is so much easier now than doing it all alone. I hope you will all post often and we can get to know each other. Hugs, Tricia

[athena453]

Hi all-

I don't know if I am technically a newbie still, but I don't post often and don't think I have ever introduced myself to everyone. I was dx May 2 with stage 3C. I'm 27, so I don't get mammo's. I never really felt a "lump"...just some thickening of tissue and soreness in my armpit. I thought the armpit was due to either a cold or a pulled muscle. I'm active and in great shape, so I would never have imagined it would be this. I had a mast 5/11; 30/34+ nodes, 8x4x3.5cm tumor, grade 3, ER/PR-, FISH 5.16. I'm not married, live with my boyfriend. No kids, though I do have a long haired orange cat. I worked for several years in the restaurant business until I made the change to the wine industry this spring.

There are tremendously inspirational stories here and this is a great forum for sharing information.

[Michelle]

I have been posting on this site for about six months now, but have never introduced myself. My name is Michelle I'am 34 yrs. old , married with two children (2&15). I was diagnosed in March of this yr with 1.9 cm-er+/pr+ -her2+++, and underwent lumpectomy.I have recently finished radiation, and am continueing with herceptin. Still waiting to start tamoxifen. While I may not post often I have found this site to be very informative and helpful. I'am very greatful to have had this site when diagnosed. Many of you have unknowingly given me the courage move through this one step at a time.

[bjj]

Hi

I'm a new member - only found out last week that I am HER2+ - after asking, and asking again, and asking yet again and again to be tested. It's not done yet as a matter of course in the UK.

I was diagnosed Jan this year, had WLE, axillary clearance, radiotherapy but no chemo due to negative lymph nodes. My tumour was grade 2, ER+ and now HER2+.

I am now stamping my feet and trying to get Herceptin - it's an upward battle. I went to a "Look Good Feel Better" make up afternoon yesterday - there were about 10 of us there, a large proportion of whom had breast cancer - I was the only one who had heard of HER2 - I was astounded. You have to ask the right questions in this country.

This seems like a great site

[Jean]

Hi Everyone,
I feel as if I found a tall glass of water in the desert when I found this site!
It is a blessing. I was dx in March 2005 - stage 1 ,her2 pos +++, er pos.
I was lucky, I felt something was wrong had a sore ache deep in my
right arm pit. A small 6mm invasive tumor was found, had surgery, lump/and sentinel lymph node biopsey which was negative. Had 26 treatments of radiation and 6 boosters. Now I am on Arimadex. Here is
my question. I have asked my onc about Herceptin and I am told that
since my tumor was only 6mm with neg. lymph node, the protocol of treatment would not be herceptin. I have gone to three top onc. in my area and all say the same. The onc treat the tumor not the type of cancer. It has just about made me crazy with concern that the onc decide on treatment based on tumor size not the type of cancer, the fact that my cancer is Her2 p +++ does not MATTER?
Any advise is greatly appreciated.

Many Thanks,
Jean

[lu ann]

Hi Jean, Do you live in the states? If you do, give Cancer Treatment Center a call 800-577-1255, or go on their web site cancercenter.com. You might get some positive results from them. For most patients they will pay for your transportation (spouse or companion for first visit only) and all meals are included for you and spouse/companions (they will feed your whole group) while you are under their care. Most treatments are given out-patient so you would have to pay for lodging. Hotels have resonable rates and they have various groups that give money to patients for help with lodging and bills not paid by insurance. Keep trying, Jean, there has to be someone out there willing to give you herceptin. Blessings, Lu Ann.

[dberg]

Hello to everyone! I'm not exactly "new" either, but don't post much.

I was dx June '04, age 45, her2+++, er/pr+, 2/13 nodes, "at least" 5cm tumor, and lots of other nasty proliferative stuff. I had a skin sparing mastectomy, followed by a clinical trial of weekly chemo, rads, tamoxifen, and finally "late" herceptin.

I have been coming to this site since Sept '04. I wish I had found it before my surgery, different decisions would have been made. My onc discouraged me from doing the herceptin trial because he thought the control arm was not aggressive enough, which in his defense was true. I agreed to another trial and regretted it, not because it was difficult but because I knew I needed to be getting herceptin. When the herceptin trial data came out at ASCO I was 3 months out of chemo. I was in his face every single day asking when I could start. He dragged his feet because there were no guidelines but I was RELENTLESS. I learned how to do that from my her2 sisters!

My point is that I don't think I would have known enough about her2 if it hadn't been for this site. The resources, motivation and inspiration it provides are why I check it every single day.

[Jean]

lu ann,

Would you believe I live 18 miles from New York City....
I have visited three top cancer centers in NYC!
I now have another appt. with a Dr. that Christine has referred me to on Dec.6th - I look forward to what he advises.

I would like to say that I am deeply moved by all of you. What a powerful
group of women! God Bless and protect each and everyone...

Jean

[chrisy]

I'm new to the site as a member and haven't really figured out how to post anything - but I've been lurking here for about a year! I too find this site the "best people" on this site.

I don't want to scare anyone, but I am a freak - My original diag in 6/02 was high grade DCIS (Stage 0) with negative sentinal node after mastectomy. No chemo, rads or anything - except a big surprixe in Sept 04 when I was diagnosed with extensive liver mets! Found quite accidentally, I might add. Amazing the lengths some people will go to to get a little attention...

Anyway, I had 6 cycles of weekly Taxol/Carboplatin/Herceptin starting 10/1/04 and finishing 3/4/05, now have been on Herceptin every 3 weeks for the past 7 months - and hope to continue for years and years. And years. Fortunately my mets responded to the little T/C/H cocktail and were mostly all gone at my last CT in July. Next one is in a couple of weeks, so of course I'm worrying a lot right now!

Anyway, thanks to all you regular poster-children - you've brought me a lot of hope and comfort. Maybe I'll actually figure out how to post myself!

By the way, I'm also in California, Santa Cruz county.

[Unregistered]

I just found this site today. Found it in search on webmd. I am not sure what a lot of the shorthand you all are using means, but I was wondering about more info! I don't have Breast Cancer. My mom(53 next month) found a lump in rt breast maybe end of Aug 2005. After some coaxing from myself and a friend went to health dept and got a voucher for mamogram (no insurance and didn't qualify for any state help) and biopsy. She had the biopsy on the 27 of Sept. Tests came back positive for cancer. I don't have any of the details as my mom has all the info with her. But the surgeon said it was stage 3 infiltrating ductal carsinoma. He told us the lump removed was too big so lumpectomy couldn't be done. She had a mastectomy on Oct 11 and the surgeon said 1 in 15 nodes came back positive. We met with oncologist and he told is she was her2+ (I see other ladies use multiple +, not sure what that means. I also see a lot of other little notes, UGH I feel dumb!) and estrogen sensitive. Onc said he wanted to do cytoxan with adiramycin for 4 treatments and taxotere for 4 treatments. After #4 add herceptin and after all 8 treatments use anti-estrogen drug for 5 years.

UGH! I just realized the time, mom has an echocardiogram today to make sure heart can take herceptin. Need to go. Can someone help me understand this more? I feel so lost. I read some posts of being on herceptin for 4+ yrs, and I don't know how long my mom will be on it. Is there other stuff we should talk with onc?

Thanks!
Terena

[chrislmelb]

ok i'll fill you in on a few:

ER+ eostrogen positive
PR+ progesterone positive.
HER-2 +++ means that is really over expressed so Herceptin works really well for that?? One + means doesn't overexpress too much. ( go to other area of board to find out how Her-2/ herceptin really works)
ECG-ecocardiogram.
MUGA- heart scan with radioactive subsatnce injected into your viens. most people seem to have them when taking herceptin.
Someone who has been on Herceptin for 4 years would be taking it for metastisis to other parts of the body. For early stage she will prob be on it for 1 year.
I would try to get your mum a CT scan and bone scan to see if it has spread.
That chemo she is having seems to be the most successful at the moment as seen in the recently released trial results.
Anti estrogen is Tamoxifen, Arimidex and more
Don't know what else to add. Just ask what you don't understand in particular and you will prob get lots of replies.
Good luck to you and your mum.
Christine

[Ginagce]

I just found this site yesterday and still trying to get familiar with the format so I hope I'm replying correctly.

I was originally diagnosed with DCIS/LCIS in 97. Had lumpectomy with rads. Diagnosed with node positive her+ in 04. Did not qualify for herceptin trials. Had bilateral mastectomies with DIEP reconstruction. Dense dose AC then Taxol. Went on Arimidex in March and Herceptin in June after it was opened up to non-trial, non Stage IV.

I am single (actually widowed, husband died of NHL in 98) and live in Philadelphia. I am treated at Hospital at University of Pennsylvania.

My best to all.

Gina

[Unregistered]

Thank you so much for the reply. I will get the info from my mom ASAP so I can ask some other questions. I forgot to say in my last post that while the sergeon said stage 3 cancer the onc said 2b. Is there a big difference? The onc said that at this point it isn't a question of what she had, but what the chance of cancer coming back.

Terena
Utah

[chrislmelb]

it doesn't make a big difference, i don't think? SOmeone else might correct me. It is when you become stage IV that it is different as that means it has metastised to other areas of the body.
Christine