HER2+ Tamoxifen Risk?

Options
abatellik
abatellik Member Posts: 80

My Oncologist has recommended that I start Tamoxifen soon, but my sister-in-law (a Physician's Assistant who has been keeping up on breast cancer research for me) recently told me that Tamoxifen may not be safe for HER2+ cancers because it could activate the HER2 cells. When I asked my Onc and my 2nd opinion Onc, neither had heard of this (possibly because it is still being researched?).

Has anyone read studies on this? Is anyone avoiding Tamoxifen and/or trying something different because of it?  I am already having Lupron injections, which I know is one part of an alternative.

thanks for your help!

Comments

  • NitNat
    NitNat Member Posts: 21
    edited August 2011

    Hi, I was diagnosed with BC in May 2009 at 29yrs old. I haven't heard about this. I am HER2+ and have been taking Tamoxifen for 18months- I hate it! I'm trying to make it to my 2yr date and then going to stop taking it. I would love to hear anything you find regarding Tamoxifen not being safe for HER2 cells to help make my decision even more easier!

  • pejkug3
    pejkug3 Member Posts: 902
    edited August 2011

    I'm interested in this as well...

    My onc said that Tamox hasn't really been researched on triple positive BC subtypes, but it's been so successful in other subtypes that he highly recommends that I take it.  He's like a walking textbook so I believe him.  I'd be interested in anything that says differently?

  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2011

    My Onc strongly discouraged Tamox and Her2 I am on Zoladex shots instead. He is a well known ONC and a big researcher and works with MD Anderson....and he said their is a subset of studies that point to in some the tamox accelerates the her2 growth in some cases.

    When I was first diagnosed I had a copy of one of the studies and now cant put my hands on it. I see him in OCT and ask again. My other Onc is ok with Tamox and I know there are ladies on here that have taken it and been fine. However on the Her2 thread there was a thread at one time where some of the younger gals 45 an under that were posting that there ONC's were against TAMOX as well. I dont think there is a definitive answer. 

  • abatellik
    abatellik Member Posts: 80
    edited August 2011

    mmm5, Thanks for your post. Are you pre- or post- menopausal? We are trying to find an option that still preserves fertility as much as possible. I know for some options the body has to have no estrogen present. I am on Lupron shots which do decrease the estrogen.  How does the Zoladex work?

    If you do happen to find a copy of the studies, please let me know as I have not had any luck in finding anything either... I am trying to gather as much info as possible before I meet with my oncologist at the University of Michigan.  Thanks so much!

  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2011

    Zoladex is just like Lupron, and it has reduced my levels of estrogen to a 3 which is as low as most Post menopausal women on AI's.

    Look up the zebra study as it clearly shows that lupron/zoladed is equally as effective as Tamox.

    Also I was 41 at dx and very premenopausal, I recently took a break from the zoladex and my period came right back so it is presumed that your fertility would be intact! 

  • LouLou40
    LouLou40 Member Posts: 180
    edited August 2011

    This is a tricky one for me also, my Onc prefers an AI for her2 BC, however I developed osteoporosis on Arimidex and stopped after one year.
    My Onc offered me Tamox but thought it would only lower my recurrence rate by about 2% as I was still in Chemopause and my estrodial level was very low, so I decided not to take it, he was quite supportive of that.
    My period returned 3 months ago (after 2 1/2 years absence) and I need to see him to revisit hormone therapy, they have been regular so guessing I'm premenopausal again. I'm 41 and reluctant to have my ovaries out due to the osteoporosis, but not sure about taking Tamoxifen either..
     
    If you do a google search on her2 BC and tamox you will find lot's of interesting reading and clinical trials, it's also been discussed on this forum a few times before.
    LL 
     
  • REKoz
    REKoz Member Posts: 590
    edited August 2011

    I was diagnosed a year to the month of my last period. Newly postmeno, I was put on Aromasin after finishing chemo. 3 months of suddenly feeling/moving like I was 95, hand/finger painful neuropothy and becoming a dried up prune inside and out, I was then put on Tamoxifen. My Onc. doesn't feel there's enough research that proves this is a problem for us triple positives. He too is well known and a researcher himself. Even if it proves true that it might increase a risk of reoccurance by some minimal percentage, that still leaves a far greater percentage that it won't. At 90% hormonal positive, I feel strongly that this part of the treatment is huge for me. And I have fared much better on the Tamox. It's not without it's side effects, but I can say that I have as close to normal a quality of life that I'd have had without getting bc. I use the common expression that recur. is a crapshot but at least I'm doing what I can to prevent that. Had my numbers been lower, I might feel differently but since their not, I'm fine with taking the Tamox.

  • pejkug3
    pejkug3 Member Posts: 902
    edited August 2011

    Thanks for posting REKoz.

    I'm still nervous about taking the Tamoxifen, but my onc is up on current research and was so insistant that I at least try it.  And he's never really done that with any other phase of my treatment - not even the chemo.  I don't even remember him really pressing for chemo (but I didn't question that as much as the Tamoxifen).

    I'm 80% ER+ and 40% PR+...I'll be starting that leg of treatment on Thursday.

  • LouLou40
    LouLou40 Member Posts: 180
    edited August 2011

    MY ER is 20% and my PR is 10%,  my Onc said that it  was the Chemo and Herceptin that was the most benefit for me. I think he will still want me to take Tamox when I see him as I'm now premenopausal again.

    LL 

  • Denny123
    Denny123 Member Posts: 1,886
    edited August 2011

    I am on Herceptin for life and after 6 years of remission, I now have an active 2cm lymph node behind my sternum.

    My onc. put me on Aromasin and actually thinks that Aromasin and a very low fat diet will get rid of the lymph node.

    I will have another PET scan in Oct to see if it worked.

    I had no idea that Aromasin might be bad for me, but I will ask him in Oct.

  • REKoz
    REKoz Member Posts: 590
    edited August 2011

    Denny- Aromasin might not be bad for you just because it was for me. If nothing else, this site reinforces the fact that meds affect everyone differently. There are plenty of ladies here who tolerate Aromasin and the other AL's much better than I did. Anything is worth a try! Hopefully you will get lucky in your unluckiest of situations.

    Wishing you the best!

Categories