Bottle 'o Tamoxifen

Hi Labtech47: I'm sorry to hear about your side effects and having to take extra pills for them. Well done you still working.

I guess your MO asked you to increase your vitamin D because (as you probably know) we need it to be able to absorb calcium for making our bones stronger. I don't know what else they do for osteoporosis.

I myself take vit D (because I'm 51 and a bit worried about osteoporosis), magnesium for calmness and a vit B complex for nerves/anxiety (brought on by Tamoxifen).

Every time I try to take Tamoxifen., I get cramps, feeling of uterus or something coming out of vagina! I am 81, ...I think I will request hormone test....may have zero estrogen now, so how would tamox even help me? Have cardio problems, and osteoporosis.....but I kind of worry about not doing anything to prevent met. But quality vs quantity is important to me at my age!

CCtoo, that feeling of something coming out of your vagina could be a prolapsed uterus or bladder. Without estrogen, some of that tissue loses its elasticity and parts start to droop. There is no harm in it, just discomfort. You may want to see your gynecologist if it bothers you.

Cctoo - 81 and taking Tamoxifen? I would have thought they would have put you on letrozole or some other Al inhibitor.

ML1209---I didn't have headaches but did have dizziness. I was doing ok on Tamoxifen for the first year with just joint pain which I was able to control with turmeric. But a year into it, I got dizziness, nausea, allergies, bloating, gas, hot flashes and a whole host of other complaints. I thought I was falling apart! It took about a year and a half before I got it all under control. Not really sure how i did but i do credit a really really good probiotic with solving a lot of my issues. I think mostly it's just how long it takes our body to adjust to this medicine onslaught. My suggestion is to keep a daily diary of complaints and let your doctor know. As to headaches, I've been told that is a common complaint with Tamoxifen. I think the severity of them is what should be discussed with your doctor.

Question for all....So I've been on Tamoxifen for almost 5 years. In the beginning I had the usual joint and muscle pains which I use magnesium and turmeric for with great success. About 4 or 5 months ago I started getting pain in my shoulder, almost like a rotator cuff injury which would be worse after yoga or weights. It would also bother me at night when I would roll over. So I cut back on those exercises and it got better. Then I spent the summer doing a lot of swimming and it slowly got worse. Now that summer is over, I decided to just walk/jog for a while. This has helped but it's still not gone. And in the meantime, I now have a new pain in a knee!! Maybe from too much walking?! I'm just wondering if others have had these kinds of injuries while on Tamoxifen? I know it sometimes causes my muscles to ache but these "injuries" are new to me. Should I just keep minimizing my workouts? Maybe find a doctor (who I'm sure will want to do an MRI or something) and see what they say? Of course, my mind wants to go to dark places about this but then I remind myself that sometimes nothing hurts for a day or two and it's not terrible pain, just annoying pain. Anyway, Tamoxifen known to cause these types of injuries?

Hi Molliefish thanks for that! Grains including wholemeal ones - and bread as well? Does that include pasta and rice too? Did it make cooking hard work or was it OK?

I have an issue with my rotator cuff. I think it is a combination of A) scoliosis B)mastectomy/recon and 2 lymph nodes removed in my armpit (scar tissue) and c) tamoxifen. I think tamoxifen caused cramps in my upper arms that cause me to work out improperly with weights. My back has a big knot in it. I have been going to PT for 2 weeks now but she says if things don't improve, she is going to send me to a shoulder doctor.

Andraxo--Thanks for that. I have also been told by one of my doctors that one school of thought is that Tamoxifen may not CAUSE some issues but my EXACERBATE them so that would dovetail with what you are saying. I've only started working out since my diagnosis 5 years ago but I'm pretty committed to it. I regularly do 6 days a week and include the treadmill, yoga and weights. I've been thinking that I was working out wrong like Trvler said. Last year I was getting a massage every couple of months and the guy commented on how he hadn't ever seen someone with such knots in their back. He was a big fellow and it took a lot for him to "unkink" me sometimes. I also think that's another "gift" from BC Anyway, thanks for the advice. I think I'll book an appointment with a shoulder doctor and see if I can at least get some PT sessions through my insurance. That should help.

Also to Goofycat--About a year into Tamoxifen I developed nausea and dizziness. It took me another year to work through it but I feel like probiotics were what helped me. I made sure I bought a good one that was kept refrigerated and had multiple strains. The one that worked the best was Primadolphius Optima in the yellow box. I buy it from my local Vitamin Shoppe and put it in a cooler till I get home so I can make sure the bacteria is still alive. Hope that helps.

That's great, Lala!

Runor---Thank you for that. I'm a worrier and I know stress isn't good for me so I try to do things that don't stress me. I like the idea of a reduced dose, at least for a while. My MO downplays much of my diagnosis but I still can't shake the fact that my tumor was grade 3 (he says if he gave my tumor to 10 pathologists, they would all have a different grade so don't worry about it) and my ki67 number was elevated (he said they looked at that number in the "old days" but no one pays any attention to it "these days"). And then of course I come back high risk, which he again downplayed to "only 7.5% recurrence risk. That's 92.5% it won't come back. I'd say those odds are damn good." He said Tamoxifen would just be a placebo for me but we all know that sometimes the placebo effect can be really good for us, especially if it keeps stress down. I've got a couple more months to ponder this issue so we'll see how it goes.

I'm not high risk from the Oncotype test but from the Breast Cancer Index test. That's the one that tells you whether or not you would benefit from 5 more years of hormonal therapy. I really thought with my low Oncotype I'd have low risk of recurrence and even my MO was surprised. But like I said anything over 5% recurrence rate is considered high risk by the BCI test and he thinks this cut off is too low. But he and my MO friend both say the BCI test is accurate to 99.99%. I'm going to try to focus on the "zero benefit" of Tamoxifen instead of the high risk part.

I started tamixifen two weeks ago. So far I have had aching joints in my hands that seems to be subsiding and one weird day of crying or feeling like I could cry if someone looked at me wrong. That was (hopefully) just a one day deal. I might have taken Tylenol or ibuprofen but have not needed anything really. I know it’s still early for me though. I take it at night based on others suggestions here.

Twills and Maui-Jen:

I don't have joint issues (yet, anyway) but some I have read on BC.org feel that Turmeric helps. I take Turmeric but not for this necessarily.

Maybe worth a try?