Stable...do I stop taxol and stay on just herceptin/zometa

jkdowl · 08-30-2011, 02:48 PM

It is a good problem to have but wanted advice from people with more experience than me. My oncologist mentioned today at my visit, the option to stop taxol since my last scans were stablle. I have been on taxol for 9 months and my peripheral neuropathy is getting worse and I am tired, but otherwise I am tolerating it okay. My next scans are scheduled for October, if they are still okay, she will let me stay on just herceptin and zometa. I was excited about this but nervous about the possibility of progression without taxol. I know it may progress either way but not sure what to do. Anyone treated with just herceptin for an extended period of time and doing well?

Thanks
Kim

LLL4444 · 01-23-2012, 06:37 PM

I haven't visited this site .. well, since 2008 the page is telling me.

I was 39 when diagnosed stage IV, ER+ PR- HER2+ with bone mets. That was January 2006. I had three AC treatments, 12 Abraxane+Herceptin, then remained on Herceptin/Armidex/Zometa. I still get Herceptin every two weeks and now Zometa only once a quarter.

I am NED ... still stable. I hope that helps.

chrisy · 01-23-2012, 06:44 PM

Before I started treatment, the plan was to do 6 cycles of T/C/H, then continue on herceptin "indefinitely". The thinking was that I would get the most benefit in those first 6 cycles, then maintain as long as possible on herceptin. You need to conserve your "resources" so your body can fight the cancer, so it's quite reasonable to take the break from chemo and keep an eye on the situation.

I got 2 years out of herceptin alone before recurring, so it's definitely possible!

KristinSchwick · 05-03-2012, 01:59 AM

Kim,
Like you I have isolated bone mets that are *fingers crossed* stable or regressing (no scans planned, just going off tumor markers) and I was initially ER-, PR- and Her-2+. But after my doctor discovered the bone mets slow growing behavior, he retested my lymph nodes and found it was now ER+. He said that it is very unlike ER- cancer to stay isolated and grow slowly in the bones, it is much more typical of ER+ cancer. I'm sharing this because it is worth mentioning to your doctor as ER+ mets are really responsive to hormone therapy.

It had never occurred to me- but it is not uncommon for mixed cancer types, especially if you had two areas of cancer in your breast initially.

As far as treatment, like you I stopped the big guns awhile ago and am really enjoying life on Tykerb, Herceptin, Femara- and I just got my ovaries out. My doc also wants me to stop the Tykerb, but I'm hanging onto the hope that the double Her-2 attack will prove useful in my battle. I totally agree that breaks from chemo are necessary, its good to reserve our energy so that we can be ready for the new drugs they are developing for us, and to clear out bodies of all the nasty chemo side effects. I'm all about quality of life.

Best of luck in your battle. Great name (BTW), my sister's name is Kim too.

jkdowl · 05-03-2012, 05:20 AM

Kristin, I have been off Taxol and on just Herceptin with No active disease since October 2011, but I am interested in retesting pathology. Did your doc retest the previosly obtained pathology samples, because I have no enlarged lymph nodes any longer after chemo. At original diagnosis, i had both tumors and one lymph node biopsied. I have not had any surgery either.

schoolteacher · 05-03-2012, 06:47 AM

My doctor would like for me to stop Tykerb too, but I want to stay on it because it passes the blood brain barrier. I like the fact that it attachs to another HER2 receptor too. I started back on Femara last week.

Amelia

KristinSchwick · 05-03-2012, 10:01 AM

Kim,
Actually I didn't have any additional biopsies done- instead my doc dug up my lymph nodes that were taken at the time of my mastectomy, over a year ago. They save all tissues in the case of future needs- and then he had the lymph nodes tested for ER status. And interestingly they do not routinely check ER status in the lymph nodes AND in the breast tumor- they assume that they are one and the same cancer. Not the case for me. Apparently they only check the lymph nodes for the presence of cancer- not the receptors.

Amelia- wow, you and I are on the same page exactly. I too want to stay on Tykerb because it passes the BBB. I did cut my dose down to only 3 pills a day- so much easier.

Rich66 · 05-03-2012, 07:40 PM

Quote:

they do not routinely check ER status in the lymph nodes AND in the breast tumor- they assume that they are one and the same cancer. Not the case for me.

Wow..tumor heterogeneity raises its ugly head again. As much as I've considered this in mets, hadn't thought of the issue in adjuvant postive nodes...a sort of pre-mets scenario. I guess any time tumor is found/messed with..push for analysis.

potra · 05-04-2012, 03:11 AM

I agree with Kristenschwick-my bone mets are primarily osteoblastic which is more typical of ERpositive (I'm negative), The plan (Mayo Clinic recommended this) is to biopsy an active bone lesion to see if that status is different and open up a new possibility of treatment.
Your increasing neuropathy is reason enough to stop treatment and Herceptin /with or without Tykerb and Zometa or Xgeva usually give good results as long as there are no cardio side effects- periodic echocardiograms are recommended.
Good luck and enjoy your vacation from Taxol!!!

Jackie07 · 05-14-2012, 06:19 AM

Looks like y'al have had experience with bone mets. Could you share some tips on how to control bone pain with Chrislmelb using the link below?

http://her2support.org/vbulletin/sho...130#post272130