Bottle 'o Tamoxifen

I’ve been having horrible hip pain that I couldn’t even walk. My MO ordered a bone scan and no Mets. However I am riddled with arthritis. It found arthritis in hip, spine, shoulders, neck, elbows, wrist, and hands. Non of this was there one the first bone scan 1 1/2 yrs ago before I started tamoxifen. Anyone actually get arthritis from this med? Is the damage permanent?

From those of you gals who take melatonin to help with sleep, some advice? I have only tried it a couple times. Took the 3mg strength. I felt wired and had weird dreams when I finally did get to sleep. Am I not taking a strong enough dose? Or does it take a little bit of time to adjust to it?

I'm having some sleep issues already. And start Tamoxifen this week. I'm trying not to get anxious.

If melatonin makes you wired, you're taking too high of a dose. I started with 0.3mg (yes, that's point 3!) and it worked perfectly. I could only find it on Amazon but this was the strength recommended by my holistic doctor.

Hi,

To change the subject for a minute, does Tamoxifen have the side effect of your hair falling out? Just wondering. Thanks

Thank you for the info.

Thanks, folks, for the 411 on melatonin. I figured it was either not enough, or too much. It would have taken me a while to figure out which. I'll try a much-reduced dose and see how that works.

tkane, i was told 10 years also.

I was told I would be on it for 5 years too, and now the doc is talking about 10. I think my MO will be retired before I get to 5 so we will see what happens. I just found out that my family doctor died last month too so now I'm in GP limbo too. So sad for her.

I was told 10, too.

Tpralph,

I am 51 and my MO told me the same as you...I will switch to an AI as soon as I am clearly menopausal.  I was not menopausal going into chemo.  I am trending in that direction now. However, if you take an AI before you are menopausal, because of how AIs work, it could actually backfire and create more estrogenic conditions that could cause a recurrence.  So, I am okay staying on Tamox for the next 2-5 years before switching to an AI.  I suspect that younger women, who are not menopausal and can't plan on moving in that direction for the next 10 years, could stay on Tamox for an entire 10 years.

I'm on Tamoxifen for 5 - 10 years and I went through menopause about 12 years ago. My MO switched me to Tamo after bad SEs from both Armidex and Femera. I started on Dec. 18 and, so far so good. Only a few hot flashes, couple of sleepless nights but mostly nothing remarkable at all. Whew! I was so worried about the SEs after my experience with the two AIs.

I was told 5 years at diagnosis then 10 years by the time I actually started Tamoxifen. But now I had the Breast Cancer Index test which showed zero benefit from hormone therapy for years 5-10 so now I'm not on anything.

My hot flashes also disappeared. (been on it since Nov 2015). I am on 10 yrs. maybe it's both research & my age (diag just turning 42) 

I'm very similar to Scrafgal and Tpralph. I'm 51 (52 in a few weeks) Premenopausal before chemo but have not had a period since last February after my second AC treatment. My blood work both in July and again last month showed I was menopausal. I actually discussed staying on tamoxifen or switching to an AI with my MO last month. He said that he wanted to do more research. His recollection was that the majority of the studies that showed AI's as being slightly more effective were done on women that were already menopausal and not forced into it from chemo. He is very comfortable keeping me on tamoxifen for the next year or so at least since I am tolerating it so well. I'm comfortable with that and I'm also glad that he wants to look into the research. He did say I'll be on one or the other for 10 years. Heck, I'd take them for 30 more if it helps.

I was 55 at diagnosis, but was put on tamoxifen because at the time it was the only hormone treatment licensed for DCIS. I was told 5 years, and so far no one has said that will change. My oncologist says he prefers to put his DCIS patients on tamoxifen not AIs because the outcomes are more or less the same, but he thinks the quality of life issues are better. Though I guess that depends what side effects you get. So far I've noticed that I gain weight more easily and it's much harder to shift. And it isn't down to being post menopause, because I was already well past when I was diagnosed.

Apart from that, I don't have any side effects, no aches and pains, no hot flushes, no hair thinning (I could do with a bit of that!) I am a bit warmer than I used to be, I was always cold before, wanting to turn the heating up. Now my husband and I are on the same page when it comes to when to put the heating on, that only ever used to happen when I was pregnant.

I think it's hard to find the facts about side effects, if you look up tamoxifen and weight gain, or tamoxifen and cholesterol, there seem to be as many studies saying it lowers levels as it causes an increase.