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-   -   How about we all check-in: mini roll call (https://her2support.org/vbulletin/showthread.php?t=19843)

al from canada 04-06-2005 06:33 PM

With 300 members, we loose track of our cyber friends but still care about them. Why not check-in and just touch base.

I'll start; Al, Linda's husband. Linda just got ultra-sound results today which were somewhat disappointing. Diffuse disease through-out her liver. Is diffuse disease better than many solis tumours? They finally agreed with us and want her to have a CT scan instead of the ultrasound to see what's really going on. That happens beginning of next month. Linda just finished her first cycle of Xeloda with no real side effects. She will be re-assessed in September and taking the xeloda at least until then.
Al

eric 04-06-2005 06:41 PM

I'm Eric, Caryn's husband. Caryn (42) was diagnosed stage IV with spots in lungs and liver in July. Was declared NED in January after reacting well to Gemzar, Herceptin and Zometa (preventative), Currently on maintenance herceptin (weekly) and Zometa (monthly) and recovering from reconstructive surgery less than 2 weeks ago. Looking into vaccine trial.

Warmest regards,
Eric

Rozebud 04-06-2005 07:28 PM

Al, sorry to hear about Linda. Keeping her in my prayers.

I'm Rose. Story listed below. Finishing my 1 year of herceptin in May (yikes....I wish I could stay on!) Heading to NOL for an SGAP also in May. Hmm....May is a big month! I have a 1 year old who is just starting to walk and an almost 3 year old.

---------------------------------------------------

Rose's story:

Dx'd 1/04 at 33, while 33 weeks pregnant (baby devliered at 35 weeks and is now >100% in weight %)!

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7, 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin, mastectomy, rads (7 weeks), tamoxifen and zoladex (5 years)

~*~VISIT OUR FAMILY!~*~

*_Annemarie_* 04-06-2005 09:00 PM

Hi,
I am Annemarie. I am currently NED. I was orginally diagnosed at 32 with Stage 3b, er+/pr+, her2+++. It has been 5 years and i wish I could say they were uneventful years. I have had reoccuring brain mets three times. I am currently on Femara and Lupron and started Herceptin after meeting Christine on this website. I am now on it for 7 months once every three weeks and doing well.

Lolly 04-06-2005 09:28 PM

Hi, I'm Lolly. I'm currently on weekly maintenance Herceptin for Stage IV, and enrolled in the HER2/Herceptin Vaccine trial at UW Seattle. I'll have re-staging scans after the last of six vaccines(this month is #4). So far, so good.

jojo 04-06-2005 10:55 PM

Hello, my name is Joanne, but people call me Jo or JoJo, whichever they prefer, I don't care. I live in California.

My story below:

Diagnosis = May '03, stage 3b (probably 3c in the current guidelines) at age 35, 6cm primary tumor, 17/18+ nodes (just one largest at 1.5cm, the rest all micromets), 40% ER+ / 20% PR+, her2+, grade 3.

Active treatment = neo-adjuvant: AC 4x dose-dence, Taxol 12x weekly, in conjunction of weekly Herceptin (originally intended for one year only).

Surgery = Mastectomy Nov '03; primary tumor completely disappeared; reconstruction delayed, haven't done it yet.

Radiation therapy = Dec '03 thru Jan '04 for 23 treatments (or was it 27?).

Another diagnosis = Recurrence June '04: supra nodes and then just one brain met in July '04, 1st Gamma Knife Aug '04 for brain met.

On Herceptin indefinitely, due to stage 4 status.

Hormonal therapy = Femara in daily pill (recurred), Faslodex by monthly injection (stable for a few months), and now Aromasin in daily pill (stable for now).

My personal note = been stage 4 for almost a year now, actually I don't feel like being stage 4, with just one brain met & supra node. Had the occasional CT scan, always clear in other organs.

BTW, at recurrence diagnosis, I took tumor markers for the first time, my numbers showed in the normal range, so my onc ditched TM's in my case. Maybe I'll ask her in the near future to run them again...

Nice to "meet" you all, although I wish under better circumstances. Oh, here is my email address, if any of you would like to ask me questions or shoot your comments anytime: acrobaticfan@yahoo.com

Lyn 04-07-2005 04:13 AM

Hi, this is Lyn from OZ, (Australia) I am currently on a break from radiation to other breast, had 23 and tooooo burnt to keep going to 30 yet, so start back on Monday. Found novel way of wound dressing of breast, put the burn cream on and then put cling wrap over it, works a treat. Also on daily Xeloda for duration.

Love & Hugs Lyn

*_IRENE FROM TAMPA_* 04-07-2005 04:38 AM

Hi - I am Irene from Tampa, Fl.

This is so great that we can "speak" to each other so easily and from so many parts of the world.

I am a 59 yr "young" women diagnosed in 1996 with aggressive breast cancer. Her2/3+.. Estrogen negative. Had mastectomy/reconstruction same time. Ned until 1999--

Recurrence went to liver at which time had a stem cell transplant and was ned until 2001 with tumor popping up in liver again. Treated with various chemo's and ned until 2003 when again tumor popped up in liver (always the same area) Had RFA to liver in Sept/2003.

Back on chemo and ned for seven months with same recurrence to liver in same spot. At this time we decided to go for broke and have my liver resected with half of the liver removed in July/2004.

Have been off of any chemo since the surgery taking Herceptin weekly since 1999. I just had an MRI of liver and at this time everything looks good. Am having CT and Pet scan tomorrow and again check my tumor markers (which I have checked on monthly basis for my peace of mind)

Feeling great and making lots of plans for this year.

Good luck to everyone out there and God bless.

Irene

Sheila 04-07-2005 06:18 AM

Sheila
just turned 53 last week, diag. Stage 1 in 2002, stage IV 2003, on Herceptin q 3 wks, soon to add Xeloda.


Al, I am praying for Linda

Hugs
Sheila

Cindy H. 04-07-2005 06:29 AM

Cindy from New Orleans, here. Dx in December 2002 Stage IV Her2+ mets to spine and lungs. 6cm tumor. Have had just about every chemo drug there is. Lost my hair 3 times. Still have mets in lungs and am on Xeloda hoping the lung mets go away or stablize. During this "journey" I have gotten my series 7 and series 63 brokerage licenses, gotten a promotion and a raise, haven't missed any more work than my co-workers, have continued to run, ride horses, exercise eat right and LIVE. A positive attitude, laughter, prayer and the loving support of my family and friends have kept me going. I'm glad I found this message board. You all are so inspiring to me. My husband and I are going to Paris in a week. Can't wait for "some day"....make hay while you can.

madubois63 04-07-2005 06:39 AM

Hi from Maryann on Long Island

Stage IV Inflammatory BC 1/00
Modified Radical Mastectomy - 24nods removed/5+ Her2+
4 Adriomycin/Cytoxin - 4 Taxol
Radiation - 32x
4 & 1/2 years of Tamoxifen

Plural effusion for my 41st birthday
Video-assisted thoracoscopy (VATS) surgery w/pleurodesis 10/04
Relapse - Stage IV Inflammatory BC w/ mets to lung/liver/nodes
Herceptin weekly since October - no end in sight
Taxatiere & Carboplaten three weeks out of the month - hope to switch to once a month soon
Lupron every three months for chemopause
Femara daily

Last scans showed mets to lungs and nodes were gone - mets to liver was half the size. Should be having new scans this month. Hope to dance with NED.

Sandy H. 04-07-2005 06:56 AM

A great idea for checking in!!!

I"m Sandy H. diagnosed in March 01 with IBC stage 111b, bil-mastectomies. Have had 4 recurrences for skin mets. Scans show clean for bone and organs. Currently on topicial Miltex and weekly Herceptin. Sure beats chemo which I have used with most recurrences. Oncologist says I am in remission even thought I have a few skin mets that I drown in the Miltex. I am feeling great and getting ready to go to Lake Tahoe end of month. Anyone in that area posting here??? Hugs, Sandy

*_Sherry in WV_* 04-07-2005 07:31 AM

Hi I am Sherry and I live in WV. Have BC with mets to liver. Many big solid tumors and small diffuse throughout. Having rough time with chemo, cannot find a chemo my body can withstand. Have fequ. low cts, with many transfusions and many hospitalizations for neutroprenic infections.
However, I' m still standing and I will live to fight another day.
This board is the best.
Sherry

AnDS 04-07-2005 08:11 AM

Anna from Edison, NJ.

Diagnosed at 28 yrs old- Jan 2004 with stage 111, ER/PR-, Her2+++, Grade111.
Had mastectomy & radiation.
Had local recurrence while on AC/Taxol. Switched to Carbo/Taxol/herceptin.
Diagnosed with bone mets 2 weeks after finishing chemo.
Currently on zometa/herceptin/navelbine.
Recent bone scan revealed lesions growing in size and intensity.
Might need to change chemo again.

But still alive, and fighting. Reading your stories has been truly inspiring. Hoping just like all of you, to one day be 'NED'.

Thinking and praying with you,
Anna

Audrey 04-07-2005 08:50 AM

Hi everyone, I'm Audrey checking in: diagnosed in July 2001, Stage 3.. ER-, Her2+, large tumor, 11+ nodes. Treated with A/C, weekly Taxol, radiation and one year of Herceptin. Finished Herceptin in March 2003 and remain NED! I keep reading this website to see how everyone is doing and to keep current with the latest info.--still don't feel like I've put this disease behind me. I live in Ohio with my husband and young son & daughter. I met a dear friend, Michele, on this site and we are traveling to Savannah in June with our Moms and young daughters to visit and celebrate our 40th birthdays! Something about having cancer really brings out the urge to travel, doesn't it? Anyway, I feel such a sisterhood with all of you because I know you share my same basic fears, hopes and dreams. I also want to thank all the husbands/care givers out there who contribute so much to this site!

triciak 04-07-2005 10:25 AM

What a great idea, Al! I am Tricia from Arizona and give a little of my story in answer to Cathy B. a few lines down from here. I was a young and active 56 when first diagnosed with BC in 1985. My younger sister died from it that same year. I had a double mastectomy, nothing more then. It slowed me down enough to finish my PhD dissertation in psychology. My husband, a psychologist, and I continued in private practice, especially doing marriage enrichment type weekends for couples and family counseling for 5 years, when the cancer showed up in my spine in 1990. No chemo, just tamoxifen, lots of prayer and alternative things. Took time to write a book on marital intimacy with my husband. Cancer in remission, we retired and moved to northern Az., wound up not retiring after all. June 30 of this past year I had a heart attack and in preparing for bypass surgery (which hasn't happened yet), a CT discovered cancer mets to the lungs, 14 years after the last met in 1990. I am doing quite well as I said in the post to CathyB., am now a young 75, not as active as I wish now, but still fighting and very positive, and enjoying life fully, including our very large family of 9 children, 32 grands and 27 greatgrands! We did have to move out of the mountains and back to the desert because of the altitude. The cancer seems to be shrinking after 6 months on navelbine & herceptin, plus femara, now just herceptin & femara. I love this website and am so grateful for all I've learned here to feel in control of the situation. I am so glad to "meet" you all and your stories have truly inspired me. My prayers and best wishes go out to all of you! Tricia

Karen 04-07-2005 11:18 AM

My name is Karen and I'm from Rhode Island. I was diagnosed Feb. 2002;Stage 3, 1 node, ER/PR-, HER2+++. Did AC/Taxol and radiation and 7 months later recurrence to node above collar bone. Herceptin/Navelbine for one year and am now doing Herceptin every three weeks for maintenance. With fingers crossed, have been NED for over a year.

Lisa 04-07-2005 02:53 PM

Thanks, Al. Great idea. So sorry to hear about LInda's latest.

I'm Lisa from Colorado. Now on weekly chemo, Herceptin tri-weekly and Zometa monthly. Doing good, but tumor markers are high and climbing. We know there's a new liver spot, but for now we're staying on course and waiting.

Love and light to all,

Lisa

vpfeiffer 04-07-2005 03:33 PM

I put all my updates on my website. Here is the link:
http://www.geocities.com/vpfeiffer@s...l.net/val.html

Hope you're all doing well today :-)

Val

StephN 04-07-2005 07:18 PM

Hello All -
This is a good way to get quick updates on some of the members.
Guess Cindy and I will be sipping our wine at a cafe in Paris around the same time. She may be leaving just ahead of us by the sound if it.

I am Stephanie and I have been fighting aggressive BC for over 4.5 years. I have had mets to liver and brain. Fought the numerous and large mets out of my liver with some hard chemo and Herceptin. Brain mets revealed this Jan by annual MRI. Gamma Knife radiosurgery on Jan 18. Last MRI was good and I have my second followup this MOnday.

Having pulmonary functions and chest CT tomorrow to try to run down the cause of my shortness of breath and tightness in my chest. Got 3 docs on it now.

I do work out 3-4 times a week and can't seem to progress much on the machines like I should. But my legs are getting stronger in anticipation of the walking I will be doing in France.

We just keep sharing our trials, tribulations and good news. My friend had good news this week. She will stay on Falsodex and Herceptin as it seems to have kept her disease at bay and her latest tumor/lymph node seems to be inactive. So many of us are able to "maintain" and live a full life.

lindaw 04-07-2005 07:48 PM

Dear Al and all
Good idea - I always wonder how others are going . Wondering about Carol and velva as haven't seen there posts lately.
I am recovering from the shock of no ovarian mets- just normal cyclical activity ( it is never normal for me). So feeling quite happy. Have just had another primary removed from left breast and mastectomy and sentinel node thingy. Sentinel node was positive so went back in for axillary. Am home and back at work ( with my friendly drainage tube). Go to onc next week to see what chemo he has for me and probably radiation. I was very intersted in Sandy H 's use of miltex to treat skin mets. I would like to try this as I still have a few floating round on my chest doing nothing but buggin me. Sandy - could you please email me with info about how you treat yours. thanks
love Linda

mamacze 04-07-2005 08:08 PM

Dear Sweet Al...you are always thinking...and what a nice, nice idea this roll call is....It is so comforting to know that all of us can contact each other literally at the touch of a few buttons.
First of all, Al, please tell Linda that we all are thinking of her ... a reoccurance is so difficult for even the most "seasoned"...I will hold her up in prayers tonight.
My story..I am from Connecticut...I am now 48 years old...First dx of Stage 0 in 2001...3 lumpectomy's to get clean margins...then radiation...a reoccurance in 4/2004...lumpectomy and follow up scans showed multiple tumors on all 4 lobes of my lungs...have had herceptin/navelbine...now maintenance herceptin...and I am enrolled in the breast cancer vaccine trial in Seattle....
I am married; no longer working, have 4 children ages 10 - 19 (2 boys, 2 girls)...busy with teen age troubles...I am sure you all are familiar with that...! and I am so grateful for the adult company on this site...thank you again Al for this roll call!
Love Kim

Isabelle 04-08-2005 03:27 AM

I am Isabelle in CT. I am happy to be turning 45 this month.

I have a long story because I have been living a pretty normal life now for 6 years with various treatments to keep me going. I just finished Whole Brain Radiation and I am waiting for my next MRI of my brain and cat scans of my body which will happen in May. Here is my story:

5/1999, age 39, diagnosed with infiltrating ductal carcinoma. Found by me after nursing 3rd child. Confirmed in mammogram.
First Treatments all 1999: Mastectomy of right breast. 20/36 nodes positive. ER+ and Fish +++.
Chemo started 7/99. A trial at Yale Univ. dose intense, higher dose chemo. (not stem cell support, just neupogen). \ Biweekly, high doses of one drug at a time. A then T then C.
Radiation of chest wall and axillary area for 25 days.
Jan 1999 - Oct. 2002 Tamoxfen for almost 3 years in remission.

10/ 2002 bone mets found after months of rising tumor markers.
Treated with Aromasin and Zoladex. BUT, found not to be postmenopausal even of zoladex. Ovaries removed 7/03 continued on Aromasin.

2/2004 Cancer progressed into more bones and liver possible lung nodule. Started Herceptin and Navelbine weekly. Zometa monthly. Tumor markers fell to almost normal. Liver spot gone. All things stable, smaller or gone as of Feb 05. Dropping Navelbine ands witching from weekly to herceptin every 3 weeks.

2/2005 Had MRI of brain at my request after reading this website. No real symptoms. 2 mets found in my brain. One tiny on right side, a 2.9 cm tumor on left. 3/2005 WBR radiation for 20 days. May need stereotactic on tumor in brain. Continuing on Herceptin every 3 weeks.

Christine 04-08-2005 05:27 AM

Hi All,

My apologies for not being that active lately, but Joe and I have been swamped with work. I'm getting houseguests from the east coast next week and am then flying back with them and will be visiting my 90 year old aunt and my cousin in Smithtown, LI, NY. I will not return until May 1.

I am still doing great, latest blood work and brain MRI's indicate no recurrance.

Hugs and well wishes to all,
Christine

*_anne_* 04-08-2005 07:37 AM

Hi everyone,
Great idea Al. I am Anne. My mom was dx with 3.5 cm IDC 5/19 + nodes, ER/PR-, grade III in 03/04. We have been on the B31 trial with ACT w/ Herceptin for a year ( to finish in Sept). She is having some headaches lately so had a bone scan scare. They found a cyst suspected mets. She will have brain MRI just to check next week. Hope and pray that we will do well. I am also wondering about Janelle whom we haven't heard from in a long time.
Hugs and best wishes to everyone.
Anne
PS: I am a dentist, and will be glad to address any dental questions if you need me to!! email me at saxenachetana@yahoo.com.

*_Kim in CA_* 04-08-2005 10:57 AM

Greetings everyone,

Feeling guilty cause I haven't checked in for quite some time. Saw this role call and thought, great idea!

Originally diagnosed Feb. 97, stage IIB. ER less than 10% pos. 5/36 nodes pos. Had 3 cycles of A/C followed by high dose chemo with stem cell rescue, then 6 weeks radiation.

June 2001 CA 15-3 48.2 so waited a month then repeated markers. I was totally out to lunch at this time and didn't follow up with tests assuming no news was good news. Finally called for results and found markers nearly at 80! Took forever to get scans and didn't actually get started on treatment until 9/27/01! By that time my markers were off the charts and I had mets throughout my liver. Did almost 8 months of Taxotere and Herceptin at which time mets had all but disappeared. Decided to have liver resection in November 2002 to remove remaining spot, because I could not continue on with anymore chemo.

Markers started rising again in April 2003, so this time I wasn't going to fart around and started Xeloda as a preventative, even though we didn't see anything on scans. Had a severe reaction to Xeloda that landed me in the hospital . My body couldn't metabolize the drug and it built to toxic levels and almost killed me. Was almost like going through the stem cell procedure again! Anyway maybe it was a blessing in disguise, because I have been NED ever since!

In Dec I finished the Her2 Vaccine Trial at the U. of Washington and so far everything is going well.

I am still getting my Herceptin every 3 weeks and I watch my Tumor markers closely. My CA 15-3 seems to hover around 18-21.

I certainly don't feel like stage 4 and have even decided to take up endurance riding!

My Prayers and best wishes to all of you, Kim in CA.

P.S. If I can ever answer questions for any of you please feel free to email me. kckhud@sonic.net

Mickey 04-08-2005 12:14 PM

Mickey from Portland, OR. Original diag. stage II , 2002. Recurrance stage IV, 15mm tumor lungs, 3 nodes, 5mm brain. Gamma Knife to the brain, gone. Nodes, gone, 7 mm left in lung as of Jan. New scan due and I hope NED. Will finish Carbo, taxotere in about a month and probably keep on herceptin. I wish I could find someone longterm remission after this combo. Haven't found one yet. Awaiting vaccine for all of us.
Mickey

lolam 04-08-2005 12:33 PM

Hi, this is Lola. I have been on Herceptin alone now for a year and no recurrence WooHoo!! I initially got BC Aug. 2000, Recurrence to lymph nodes in neck and chest Dec. 2002. Lots of chemo and rads, mastechtomy.
Rarely does it happen, but because of A/C I now have developed MDS, myleodysplastic syndrome, a bone marrow failure disease, therapy-induced. It progresses to acute myleoid leukemia. It is a terrible thing when therapy that kept you alive with one disease (BC) causes another disease.
Will be looking into a bone marrow transplant with a MDS specialist in Seattle. BMT's often have the affect of kicking up latent cancer cells so I could have a relapse of BC after fighting off MDS. Someone has to come up with a better way to cure cancer!!!
I have a new MDS forum now that divides my time , but you are still on my heart.
This group has literally been my lifeline. I might get to meet Steph in Seattle this week end. Would love to meet you all!

san 04-08-2005 08:14 PM

Hi, I'm Sandie from Illinois.

I was diagnosed in 2000 with stage 2 tumor. Had a lumpectomy. Tumor HER2++, er/pr -. No node involvement. Had A/C then 6 weeks of radiation.

Felt great and didn't keep up with follow-ups as often as I should have. Diagnosed in 2003 with mets to Lungs - tumor 9 cm. On navelbine/herceptin for a year and hurrah! NED

On triple herceptin every three weeks for 6 months. Again I felt great. But, found out tumor came back again. I've been on navelbine/herceptin now since January. I go for a scan in two weeks. Hopefully, the tumor's shrinking.

I'm a third grade teacher, which has really been a godsend. The children keep me so busy and we have so much fun while working I don't have time to worry about any personal problems. I just wish they could share some of their energy with me.

I love this website. It's great to talk to people who have the same issues. I really appreciate all your advice.

Thanks everyone!

Patty H 04-09-2005 01:48 PM

Hello. this is Patty H. I just started gemzar for lung mets a few weeks ago. Was having some problem adjusting to it. I had no side effects on navelbine but gemzar was making me nausia and flu like symtoms. The Dr. gave me some pre-meds this week and some ativan so now I feel good. Patty H

Kathy in NY 04-09-2005 04:20 PM

Hey everyone
I'm Kathy at the great age of 44
I'm stage 4 , mets to spine and brain
Original dx 1998
Recieving weekly Herceptin, Navelbine 2 wks out of the month,Zometa monthly and Lupron every 4 months...I spend a alot of time at the docs!
Gammaknife in July of 2004 which was successful and so I guess everything is under control.
Enjoying everyday like its my last

michele u 04-09-2005 10:16 PM

Hi All! This is Michele U. from Nebraska. I was dx in Aug of 2003. ER/PR neg Her pos. 34 pos nodes. stage 3b. 2 lumpectomies to get clear margins. Took AC x 4 Taxol x 12 then one year of Herceptin and radiation. Finished my Herceptin in march and looking to get into a vaccine trial. Still waiting for them to let me know. Doing well, only by God's grace. I didn't think i would even be here 18 months later, little alone being ned right now. I have found this site a Godsend.

Claudia 04-10-2005 07:33 AM

Hello everyone, My name is Claudia and I live in the state of Maine. I was dx with stage IIIB Inflammatory Breast Ca this past July. Iam HER2 + and ER/PR -. I finished tx's March 1st. Every two weeks I received 4 tx's of A/c and 4 tx's of Taxol. Dec. 1st I had a double mastectomy. My margins were clear and 10 lymph nodes removed all were neg. Other breast removed was Atypical hyperplasia DCIS that was a surprise. A month ago I finished 31 tx's of rad. Now I am on a fighting mission with my oncologist to take Herceptin as a preventive. Thank you again for all your replies when I needed info. on taking Herceptin as a preventive. I will keep you posted. Hugs and smiles Claudia

lorri 04-10-2005 10:42 AM

Hi My name is Lorri from Worcester, Mass I 've been following this group for some time now. Your all a great inspiration to me. I'm 45yrs old, diag in Aug 2003 with BC. Neo-adjuvent therapy A/C x4, f/b mastectomy, taxol x4, then radiatiion x36 rx's. 22/26 + nodes, ER/PR-, HER+++. I knew then Herceptin would be my savior! Oct 2004 my greatest fear came true-mets to my liver! All is going well now with marked regression in hepatic lesions. Still on weekly hercetin/navelbine since Nov 2004. Feeling great! I continue to exercise 3-4 times a week, eat lots of fruits and veggies and continue to ENJOY every single day of my life! I tell my self every day " Yesterday's the past, tomorrow's the future, but today is a GIFT. That's why it's called the present." ( The Family Circus Bil Keane).

AlaskaAngel 04-10-2005 02:05 PM

I've met StephN in Seattle and hope to hug her again soon (Steph are you going to be away from home in early May???)

My home is SE Alaska. Stage I NED. I am feeling apologetic and yet dismayed that my own tendency to still have one foot in denial 3 years after dx is mirrored so clearly by the lack of roll call posting by other HER2+++'s with no recurrence.... yet. I feel this site is too educational for others who are NED not to be here.

I am 54, married to someone special, with strong family history, and am a participant in the Early Detection for Ovarian Cancer clinical trial, as an aunt died of ovarian CA.

Markers have correlated for me all of the way through left lumpectomy, SNB, CAF x 6, rads, 1 3/4 years of tamoxifen (now stopped due to question of tamoxifen/AIb1 interaction for HER2+++'s).

AlaskaAngel

Angela 04-10-2005 03:18 PM

I am from North Carolina. Dx May 2003 at the age of 39 with invasive DCIS. Had left mastectomy, no nodes, PR and ER - but Her2+++. Had 4 rounds of A/C. At this point I am NED. I visit this board at least once a week to keep up with everyone. This site and the stories and support everyone shares has been a blessing in my life.

Hugs to all,
Angela

Margaret 04-10-2005 07:59 PM

Hi everyone, I was diagnosed in Nov. 2001 with stage 3b, 16 of 16 pos. nodes, 9cm tumor, er/pr -, her2+++ at age 38. So grateful to say I'm NED at this time. Had 4ac, 4 taxol w/ herceptin and then one year of weekly herceptin and radiation too. I've changed my lifestyle a great deal. Left my husband (toxic relationship) do lots of yoga and eat as well as possible (veggies, fruits, nuts and seeds....mostly organic) I've learned not to take a single breath or day for granted. I now hear the birds and smell the flowers! My best wishes to all.
Margaret

Eccles 04-10-2005 09:44 PM

Good timing Al and Linda, the roll-call: to count our blessings at still being here to sign in. It is 5am here in the UK and I've had some quality sleep. Consider myself very fortunate to have have only one 'situation' to cope with: an active posterior fossa tumour (which may be BC mets, but being inoperable, it is academic). Dx- HER2+ with nodal involvement July 2003. Asked for and received double mastectomy with no chemo or radio. Eighteen months of real quality life and then a heavy pain in the back of the skull. Mid-Jan 2005 MRI shows main tumour and another smaller one. Otherwise NED. Regime: Dexamethasone 4mg daily, (the poison which gives me one more day) Omeprazole (stomach protection),Temazepam for sleep, Neurontin SP (Gabapentin) to smooth the ride, paroxetine for emotional stability, oxycodone hydrocloride for feeling less pressure build-up and/or pain (erratic results), lots of good humour, travel, family, friends, support, email, buying larger and larger clothes at thrift shops, giving away, passing along, LOVING, TRUSTING THE PROCESS, LEARNING, and lots of chocolate, coffee, cake, cigarettes (I know, I know, but honesty is a principle with me). I am grateful for what I have got, AND for what I have not got in my life and I wouldn't trade places. I avoid doctors and hospitals and stick to the MacMillan nurse, the local cancer support centre (where both my husband and I get emotional support we need and in my case starting hypnotherapy next week), the community nurse who sees to it that my needs are met as they reveal themselves. Probably the most challenging aspect of the situation now is that it is changing so rapidly, within the day now. Keeping emotionally balanced and spiritually centred in the moment is enough work for me; not slipping into self-centredness, which is constantly tempting. Finding out who I am, what I can do and what I can't, which changes within the day. It is just part of my journey and the journey of those in my circle. It is a journey of love and wholeness. So I salute you all with respect. Erika (p.s. hope you got the attached photo; I can't see it from here.)

Kim in DC 04-11-2005 06:27 AM

Hi everyone!

I may not write often but I read everyday! I am still in the middle of radiation. The big question now is how long to stay on herceptin before I enter the vaccine trial. I'm waiting for Dr. Peoples from Walter Reed to get back to me.

Praying for us all!!!

Kim

Velva 04-11-2005 11:35 AM

Hi, I am Velva from OK dx in 99, Stage IV currently receiving Herceptin weekly and Carboplatin & Gemzar every 3 weeks. Just returned from M.D. A nderson for 5 month ckeckup. MRI (brain) was clear (post crainiotomy of cerebellar tumor). Good idea Al for the roll call!


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