Tamoxifen Issues

[kimsmo]

I've been on Tamoxifen for just over a year, and I've had a ton of side effects. In fact, there were multiple blood tests, a bone scan, and a liver ultrasound to try to get to the bottom of my issues (joint/muscle/bone pain, fatigue, foggy brain, constant headache). Everything was normal except a slightly elevated Alk Phos. And I've been doing all the right things (extremely healthy diet, exercise, etc.). So my oncologist asked me to stop taking Tamoxifen for two weeks to see if my symptoms ease. Sure enough, within a couple of days, I was feeling like my old pre-cancer self - extremely energetic, pain free, and very happy. I can't fathom going back on that drug which made me feel like an ill 80-year-old. (I'm turning 50 in a couple of months.) I'm hoping my oncologist has some good alternatives for me next week when he calls to check on my symptoms without Tamoxifen. Anyone else been through this?

[Lucy]

There are other anti-hormone medications available but my thought is that you're only swapping out side effects (although they all seem to have similar ones). At some point you have to decide if the side effects outweigh the benefits. For me, I'm not thrilled with the side effects I'm experiencing but I know I'll never regret going through this to improve my odds but I could regret going off the treatments if the cancer came back. I would talk to your oncologist and see what your options were and what your odds look like if you're taking the medication and what they look like if you stop taking the medication. Then you have to decide if the side effects are worth it to you or not in the long run.

[Debbie L.]

Kimsmo,

Such severe side effects are not common but they do happen, as you know (wry smile). What is your menopausal status? I'm guessing you'll be offered an AI (aromatase inhibitor -- Femara, Arimidex, or Exemestane) if you are definitely postmenopausal, and perhaps ovarian suppression with an AI if you are not.

There's no way to know if you'll do better on an AI except to give it a try. Even within the same class of drugs, some women do better (side-effect-wise) on one vs another, but figuring that out is again a matter of trial (take the drug and see) and error.

There was an interesting study a few years ago about switching from one AI to another to reduce side effects. It was effective in many cases (alas, I don't remember the percentage). But the interesting part to me was that the switching was equally effective no matter which one was switched to or from. There's someone on this list who reported that she takes one AI until the side effects (muscle/joint pain) get too bad and then switches to the other -- back and forth. I thought that was a clever solution.

Good luck, and let us know what comes of your conversation with your oncologist, okay?

Debbie Laxague

[europa]

I had horrible side effects when I first started on tamoxifen. I mean horrible. I had terrible night sweats, the hot flashes were insane ( sticking your head in the freezer works like a charm), my headaches were more like moments of "duhhhhhhh". I lost my train of thought all the time. I felt like my whit was flushed down the toilet. And to top it all off I had an acute case of vaginal atrophy. I won't get into specifics, but if your curious search for my posts about a year ago or so. Thankfully I found vagifem and a topical cream which I marinate my lady parts in for relief.
After two years on the tamoxifen my side effects are more manageable. But I deal with a bunch of stuff that has become normal to me. The severe hot flashes, bone pain and duh moments seem to be not as bad. I am choosing to launch myself into menopause by shutting my ovaries down so I can use arimidex instead of tamoxifen. Maybe that will be an option for you too.

[Lisalou]

My girlfriend had the exact same symptoms for Tamoxifen. She was switched to another med in the same class of medications and did well with it.

[jra40]

I am so glad you posted this. I have been having severe issues with constipation, nerve pain, headaches and have been tested and scanned but nothing shows up. I have been on Tamoxifen since 2011and have had all the side effects noted. It didn't occur to me that Tamoxifen may be causing these other issues. When I saw your post, I decided to take myself off Tamoxifen for a week. I'm day 3 into being off Tamoxifen and my issues have dissipated immensely! I'm hoping to find another alternative if it was indeed the Tamoxifen causing me problems - I do not want to live in pain everyday from this medication. I have to take my life back at some point!

Keep me posted on what they give you alternatively - I am premenopausal so the other alternatives won't be an option for me.

Jessica

[kimsmo]

Well, I met with my oncologist and gynecologist this week. FSH tests show that I am still peri-menopausal, so I'll need to go back on tamoxifen for a few more months, then we'll test again to see if I have crossed the line fully into menopause and can move to Arimidex. It was so nice getting a little break from the side effects. I'm hoping they won't be so bad now since my body has had a chance to recover a bit. I'll let you know how it goes.

[pinkpeonie]

Hi all

I have been reading all the comments in this thread with great interest. I was diagnosed with BC in 2011 . I have had mastectomy, chemo , radiotherapy and herceptin. Initially I was put on femara but the side effects were so bad for me that I had to discontinue. My oncologist then put me on tamoxifen - i have pereservered but again the side effects are affacting my functioning. I have 2 teenage daughters 13 and 16 - and side effects were affecting our relationship so I stopped it. I feel like a different person - wont go into all the details. I have looked at online research and saw that there is only a 1% increase in reoccurence rate if you arent on tamoxifen with her2 positive breast cancer. Does anyone know of any current research to support this statistic.
I know for everyone the se are different and whether to take hormonal tabs is also different. I obviously want to do all to ensure I am here for my girls as long as possible but at the same time I want the time I have to be of a quality that is positive for our relationship especially in the critical teenage years.
Anyway I am rambling on - I guess I am a bit wary of not have tamoxifen cover but yet on it I am barely able to function properly so makes for a hard choice!!!

Thanks for listening - any links to research on this would be great xx

[sddinkinsmom]

pinkpeonie
I don't have the research that supports that it is only 1% chance of helping, but I am with you all the way. Reading all these posts......it is a really tough drug for some of us. And for others they don't seem to notice the SE. And I am so happy for them. I have had a horrible time with the tamoxifen as well. So much so that I had a few scans done also last week to rule out cancer...all where negative, thank goodness. But after much research and multiple trips to OBGYN and onc. I was told a total hysterectomy and bilat. oophorectomy is what would be best for me. Also I was told that I could try out all the AI's to see what would be best option for me and if they seemed worse than the tamoxifen I could go back on that also. I think there are lots of options out there. I understand why people just stop this drug and don't look back. I have 4 young girls and they are not teens yet, but with as bad as I was feeling I was worried about those upcoming years, b/c I have a hard enough time right now. We do have choices, but I am with you all the way that quality time with our families while we are here on this earth is very, very important, and only another in the same boat will understand that, b/c I feel like there will not be a medical person who gives the head knod for us to come off tamoxifen to improve our quality of life.....and I am a nurse.
Best of luck and do your digging and research to find your best options.