New to the sight, couple of questions

KGuerrero · 06-22-2006, 12:37 PM

I am new to this sight, very glad I found it. I'm wondering if there are any of you recieving Herceptin 3,4, or five years after diagnosis? I am 5 and half years out, my time is up on Tamoxifen and my Onc and I are looking at options for continuing treatment. I was 85% ER+, 95% PR+, Her2+, 5.5 cm tumor and 14 + nodes. I'm at high risk for recurrence, which makes my 5+ years cancer free pretty amazing. But I am always looking for pre-emptive treatment to keep the devil from coming back. I am also considering Oopherectomy or Zoladex, and would love to hear from anyone who has gone that route. Side effects, benefits, anything. Thanks, Kat

Lolly · 06-22-2006, 01:56 PM

Hi Kat, welcome to the group! The question of late Herceptin for high risk early stagers has been discussed here by several who are in your shoes, Alaska Angel for one. There are no clear guidelines yet, but you'd need an agressive onc who's willing to push the envelope and prescribe it "off-label", and then you might have trouble getting your insurance to cover it, but maybe there are some who will respond who've been down that road.

I'm going into my 6th year of Herceptin use, but I have recurrent BC in my lymph nodes so am considered metastatic. Have had few side effects from Herceptin, other than occasional tiredness and lower ejection fraction of the heart; most of my long term side effects are from the various chemos I've been on.

Best wishes in your search for answers, and again, welcome. You're among friends here.

<3 Lolly

tousled1 · 06-22-2006, 01:58 PM

Kat,

Welcome to the board and congratulations on being NED 5 years! The women on this board have a wealth of experience and knowledge, so you've come to the right place. Good luck to you.

mamacze · 06-22-2006, 08:25 PM

Hi Kat,

Welcome to this site! Your note isn't clear how long you have been on Herceptin...when we were at the ASCO conference in Atlanta; a few researchers noted the peak of the bell curve for Herceptin resistance is in year 3 and 4. However there are many, many metastatic cancer patients on this site that are more than 5 years out. In fact. Chris and Joe (web master) know a lady who is 12 years out and who was in Dr. Slamoms original clinical trial. I am metastatic (er/pr - and her2+++) and have been since my mets diagnosis in April 2004. Thank God that Herceptin has kept me with no evidence of disease since then. I have had a total hysterectomy and 4 lumpectomies.
You are in the right place with your questions, we are glad you joined us!
Love Kim from CT

penelope · 06-22-2006, 08:36 PM

what is meant by resistance is in year 3 or 4?

Lolly · 06-22-2006, 09:11 PM

Penelope, it's become apparent that many(not all)of us on long-term maintenance Herceptin for Stage IV disease start showing signs of the cancer becoming resistant to Herceptin in that it's less and less effective in keeping metastis at bay. In my case, length of time between progressions is shorter than when I first started Herceptin in 2001. There's a new drug on the fast-track for FDA approval by the end of this year that will hopefully replace Herceptin for us, called Tykerb. Type it into the search field here and you'll get some more info.

<3 Lolly

Bev · 06-23-2006, 09:00 PM

Hi Kat, I would think switching to an Ai would make lot's of sense right now.You would have to be post-menopause, so it depends on how you feel about getting there. BB

chrislmelb · 06-24-2006, 03:19 AM

I can relate to that! That is why i had an oophrectomy and got on the HERA trial.
I had my ovaries out a few months after chemo and was on Tamoxifen. After a while, and many suggestions by me, I changed to Arimidex. I found the ooph very easy compared to all the previous surgeries(i had 3-4). I am also taking Herceptin late as part of a trial. I started it 18mths late. If i was you i'd aim to have your ovaries out and get on Arimidex or another AI. It seems maybe that is what the Dr is suggesting.
Take care
Chrsitine