Can't take Tamoxifen

kingjr66

Hello Ladies:  I was wondering if there are any of you out there than can not take Tamoxifen or any of the other hormone therapies?  I am told that I can not take Tamoxifen.  I have very strong family history of blood clots and pulmonary embolisms.  I am 51 and still ovulate and was told that I would need to be put into post menopause.  I was offered removal of my ovaries or a shot of something.  I was not paying close attention to the "shot of something"  since I was still trying to take in the removal part.  I was previously told several weeks ago that I would need chemo but had oncotype dx and my score was 13.  This all seems too much since I have a very good prognosis.  I was given only an 8% chance of recurrence of this cancer and a 15% chance of any other cancer forming.  I still am waiting on my brca test results.  Surely because of my age I may be post menopause pretty soon.  My mom done at age 46 and my sister 50.  Any advice from similar situations?

peggy_j

I don't have the same situation but a friend's SIL had a serious problem with clots on tamoxifen. I think it's wise to consider your family history. (fwiw, it's possible to be tested for the blood clotting factors but for some reasons, the docs don't do it very often.) Yes, I believe if you are pre-meno, you can get a shot to help shut down your ovaries and then take an AI. I think it's a fair to weigh the likely benefit of any of these treatments. Like you, I am pre-meno and have a relatively low risk of recurrence, about 15%. My MO said if I were post-meno the risk of recurrence would be around 10%.  But I am >95% ER+ so my MO is strongly recommending tamoxifen but said it's not an obvious choice.  FWIW, you may want to check out the Hormone forum here--lots of members are discussing things like this.

cd1234

Hi,

Different siuation also. I devloped a nasty disease called Porphyria as a result of taking Tamoxifen, so I could no longer take it. I opted for a complete Hysterectomy and Oophorectomy. I was very pre-menopausal and very highly ER positive. No regrets...I feel great.

Take care,

kingjr66

thank you ladies for your posts.

changes

Another option for pre-menopausal women is Fareston - I don't know what impact it might have on clotting, though.

stephN

Hi kingjr, 

I couldn't take tamoxifen because of the risk of uterine cancer.  (I had  a pre-exisiting condition.)  I opted for the full hysterectomy/oophorectomy and AI also, but it's a very personal decision.  I didn't want to take the Zoladex or Lupron shots.  If I had been closer to menopause, I might've tried that for awhile.  I do feel great in menopause, though, despite the hot flashes!

Steph 

coraleliz

Fareston also has clotting issues/side effects. From the studies I've read it seems like Fareston has the same SEs as Tamox but maybe just more frequent. I was told fareston was a posibility for me but I don't have clotting issue/concerns.

SamRhodesGreece

I have just discovered that maybe the Tamoxifen that I am taking may not be working to its best due to the CYP2D6*4 results from gene testing. I am so glad that I read whatever I set my eyes on with regards to my situation. I am 100% estrogen positive (diag may 2010, biopsy, lumpectomy and radiotherapy (19) multiple tumours under 1mm + dcis) After 2 years of Zoladex and tamoxifen (age 43) with these test results I am so scared to rely only on the meds. I am booked for hysterectomy on 1/3/2012, an then I will change to Aromasin. Doc wasnt 100% in agreement he told me to continue with Zoladex and Tamoxifen for another year but said that it wasnt a medical mistake to opt for surgery. I look at it from the point of view that my kids I've had, More kids I cant' have (because of meds), although there is the possibility of falling pregnant, and why when its crystal clear that these meds will be long term for me (menopause, who knows when it will occur) should I be subjected to the adverse reactions of long term meds. I want to know that I am doing all that is out there to prevent recurrence. I am not very comfortable with the "do this for a little while and we'll see". It is dangerous for me to have a cycle, period. Therefore I will stop them.

Kaara

For anyone who can't do tamoxifen due to clotting issues, ask your MO about using Metformin instead.  There is a thread on the site that talks about it, and how it can help prevent bc recurrence.

coraleliz

SamR-CYP2D6 may not be such a reliable test. You might want to "search" here on bc.org & on the web. Also, if you want to have faith in the test, there is another SERM that may be more beneficial to "poor metabolizers", Fareston. My MO discussed the metabolizer test & Fareston with me recently. But it sounds like you don't want to continue the Zolodex.  So I guess this info will only be helpful if you decide against having ovaries removed.

peggy_j

coraleliz wrote:

SamR-CYP2D6 may not be such a reliable test.

I've heard this too. Dr. Love addresses that topic on her website:

Should I have the CYP2D6 tamoxifen resistance test? 

http://www.dslrf.org/breastcancer/content.asp?CATID=19&L2=3&L3=7&L4=0&PID=&sid=132&cid=1146 

kingjr66

hello to all that have posted.  sorry have not been on thread due to health issues. Feeling under the becasue co-worker would not stay home from work all last week and go me sick.  She's going into the fire after I finish here. 

I have just gotten by brca results......negative......no hormones for this gal, keeping my ovaries and not having any shot to stop period.  I searched Lupron and will not do it.  I will be 52 in a couple of months and will take my chances.  Heck, I only have 8% chance of recurrance and 15% somewhere else in my body right now and I have not finished my rad treatment which will bring those #'s down some more.  I think that's good odds.  Plus my mother has been cancer free for going on 34 years now. 

hhillmontana

Hi there.  I'm in a similar situation.  The tamoxifen is making my anxiety go out the roof.  It's getting worse each month.  I'm considering a hysterectomy/oophorectomy but like most am freaked out about what do I do once it's all gone since hormone therapy is not an option.  It was good to see 2 people say they are having no problems.  Is there anyone out there that has had high anxiety and opted for the hysterectomy/oophorectomy?