Herceptin not working...

Dace · 07-19-2006, 01:44 PM

I was diagnosed on 1/31/2005 with invasive ductctal carcinoma er/pr- and her2+. I had a lumpectomy, 10 of 17 nodes were positive, followed by 4 ac and 4 taxol. Then at my 6 month post surgery mammo, they saw calcifications, so i had another biopsy which did show cancer, so I had another lumpectomy on 10/11/05 (3 days after my 34th birthday), no clear margins. Had another lumpectomy on 10/31/05 and then started radiation 12/5/05. Finished rads on January 06. In April I started herceptin. Also in April, I found a red spot on the lumpecotmy breast, which after 11 days of antibiotics and no response, turned out to be Inflammatory Breast Cancer. Had a mastectomy on May 18, 2006. two weeks after my surgery I saw a spot just above the scar that did not get better after a week, so I went back to see my Dr. and guess What? still have IBC! Still doing herceptin although it does not seem to be working. My current onc does not seem to agree. And I was told that I do not qualify for the tykerb clinical trial. I finally got a referral to City of Hope (here in Southern California) and the onc there wants to start Gemzar/Carboplatin to see if we can get it to respond to something and then maybe eventually a clinical trial for DD chemo followed by a stem cell transplant. I am beyond frustrated and scared. I am 34, my children are 6 and 8 and I want to see them grow up, so i am willing to do anything to make that happen, I just need hope that this could still be ok.
Thanks...

Cathya · 07-19-2006, 03:19 PM

Dace;

I can imagine you are scared and frustrated! Jean, although in a different situation, was equally frustrated and finally...somehow, was able to make a trip out west to see Dr. Dennis Slamon (Seattle I believe). I think, given the complications of your situation I would email Jean (you can search her out on this site) and ask her about her experience and the cost, etc. You need the absolute best oncologist and the one with the most experience and knowledge and in my view he is the one. Jean is the only one I know of on this site who has seen him so I would start there. Don't give up hope....keep us informed. Other will have ideas and experience in this area. God bless.

Cathy

Esther · 07-19-2006, 03:25 PM

I didn't know Dr. Slaman was seeing patients. But he and Dr. Mark Pegram are at UCLA in southern CA. You can arrange for a second opinion there.

I did it and am very glad I did.

fourboysmom · 07-19-2006, 09:14 PM

Oh Dace, Your post touched me- I am sorry you are going through all this. You are young, with little ones. I will certainly keep you in my prayers and positive thoughts! This disease stinks, it really does. Hang in there. With love from the other side of the country, Janet in CT

lu ann · 07-19-2006, 09:52 PM

Dear Dace, There is a lady on this board named Sandy who was dx. with IBC. She has been around this site since the beginning and would be help to you with your questions and fears. I know how sad I felt when I was dx. 15 years ago and had 3 little ones, 7, 4, and 8 mos. I was dx. with recurrance Feb 04 and it is no better when they are 20, 17, and 13. The thought of leaving your kids behind is a horrible feeling. Just take one step at a time. Blessings, Lu Ann.

Joy · 07-20-2006, 08:59 AM

Hi Dace, I'm sorry for all of this nonsense (I also have 2 young children and stage IV BC). I was just at my oncologist's office discussing my next path and she had hoped to look at Avastin, but said that the studies that came out of ASCO showed more benefit to IBC gals. Don't know if that helps and I haven't looked this up specifically myself, but it is easy to look up the ASCO data.

Best, Best wishes to you!
Joy

Karen t · 07-21-2006, 09:43 PM

I did see Dr. Dennis Slamon at UCLA in February 2006; he has started taking patients again on a limited basis. You can google his name and obtain the contact information.

Dace · 07-22-2006, 07:35 PM

I can't begin to thank you. Your post has given me hope that I can actually beat this! I will be starting Gemzar/Carboplatin next week. I will ask her about the tykerb. I am going to look into the disibility. It's just that working is what takes my mind off of all of this and keeps my life somewhat normal. I am actually switching onc as of this week. I am going to the City of Hope a cancer research center here and I feel good about that. I would like to hear more about your story. I will email you this week. They put my port in yesterday, so moving my neck. Did you have pain with your IBC? I would be doing better without the constant reminder. oh well, I look forward to seeing results.