Bottle 'o Tamoxifen

just to add to the excellent AI and T doscussion, because of how AIs work vs T, taking an AI before menopause actually increases BC risk. I might switch to an AI in December after one more hormone test for menopause. I had a partial hysterectomy a few years ago but I still have ovaries and was nowhere near meno when I was diagnosed at 50. Just turned 52 and have been trending toward meno since chemo ended. We need to be sure about my meno status and before making the switch. Some o c assume that all 50 year olds should go on an AI but it's all about meno status not age.

Has anyone had tamoxifen joint pain decrease from exercise? I have been walking most days in the hope that my joint pain will improve, but it seems to be getting worse. I started tamoxifen in June. I was advised to add vitamin D3, which I have, and I also take Gabapentin at night.

Buttercup

Thanks, Lula!

Karen- your doc is splitting hairs...low estrogen causes joint pain. Joint pain is not listed as an official side effect of tamoxifen. There’s a fine line between absolute side effect of a medication and the side effects that result from what the drug does. So blocking estrogen doesn’t cause joint pain but not having enough estrogen activity in specific cells/tissues does.

Also PrincessButtercup , I noticed that my joint pain was reduced when I focused on strenghening my muscles around the joints where I had pain (my knees). Also, rolling on the foam roller up and down my thighs was recommended by my personal trainer for helping with the joint pain--she said it's b/c it helps the muscle around the joint to work betterr--I did find that to be helpful.

MinuteAtATime, you made me chuckle on the vagina being fried. I have the atrophy and hurts with sex, was using estrace cream but stopped when I was diagnosed with the breast cancer.

I also think our age is dependent on how we react to the tamoxifen. I am 64, past menopause, but taking the tamoxifen I rarely have the hot flashes.

I have been on Tamoxifen since February 2015. The joint pain did not start to get really bad until last month. All along I have had hot flashes; muscle cramps at night and a bloated belly. Anyone else have the bloated belly? My eyesight has been declining year upon year. I need to get new prescription glasses and a thorough eye exam. I typed in foot pain and I am ever so glad I found this thread. The weather change last month caused my whole body to hurt so badly I could cry. I found 800 mg ibuprofen {old rx I had saved} and a hot shower to help alongside rest under the blankets. Someday's my whole skeleton hurts but mostly my hands. Lately I have been having severe left foot pain. I am a massage therapist and stand hour upon hour. My foot is very stiff. After a day of work it hurts so bad that any attempt to move it left or right while laying down for sleep is excruciating. I called my oncologist and she said it was not an SE of Tamoxifen. I think the lady that wrote here that technically it is a lack of estrogen causing the joint pain not the estrogen blocking of the Tamoxifen is correct yet we all know it is the Tamoxifen indirectly. In December I am finally having my ovaries; uterus and cervix out. My oncologist has wanted them out since dx but a lumpectomy then mastectomy then 4 reconstruction surgeries made it impossible at the time. I am getting everything out. The Tamoxifen has caused one uterine fibroid to grow as big as a tangerine. I feel for the gal that has to have uterine and endometrial biopsies. I found of all the gynological procedures the endometrial biopsy is the worst. Absolutely very painful. I suspect when I go to the oncologist mid month she will start me on AIs because my OBGYN tested my hormones and I am now menopausal. I am not looking forward to it as all I hear is that AIs are very taxing on the system. They cause Worse joint pain. I did all that breast surgery then started having gall bladder problems. I had that removed in June. I am having vagina issues too. Sex has become painful. I use cbd oil on my right knee as it needs to be replaced and it really does more to help than steroid shots or the knee brace I have. I went from a speed walker and work out Queen to an achey old women. From 46 yrs old to 80 like others on here say. It is very hard somedays. I am also supposed to be on Tamox or whatever AI they put me on soon for 10 years. I am on year 4 and I cant imagine being anymore stiff or feeling older.

I always read along but rarely post. I have a few minutes and thought I would actually post something. My eyes have been hurting for what seems like the entire time I have been on Tamoxifen. I finally found time to get them checked. When I mentioned that I was on Tamoxifen when I made the appointment they wanted to see me the next day. The doctor had concerns because Tamoxifen build up on the eye. You all understand that I can't remember exactly what because I can't rememberanything anymore! Anyway, no issue with that but my vision is declining some which can be "a natural age thing". The doctor also said anyone who is on Tamoxifen needs yearly eye exams and more frequent than that if there is a problem.

Yesterday while delivering Meals on Wheels one of my favorite clients said "I didn't know you had a mustache." WHAT THE HELL?!? I had no clue I was getting a little peach fuzz on my upper lip! An elderly man saw it but I didn't! Anyway, that fuzz is gone now!! #Tamoxifensucks #nolipfuzz4me

Bcky--I had a total hysterectomy 2 years into Tamoxifen and stayed on it throughout my 5 years. You don't HAVE to swap to an AI if you don't want to. My BS said I would only see about a 1% improvement in my recurrence rate and that he's not convinced an AI is worth it for some gals who are lower stage and grade. And just FYI, I found the surgery to be a breeze and recovery even easier. I immediately felt better, especially since the bloating part went away. I definitely found the hysterectomy to overall make me feel much better.

And Vargadoll--I was about 6 months into Tamoxifen when my SIL asked me if I'd like to "accompany" her on her visit to get her lip hair removed. It wasn't until I was there that I realized she made an appointment for me too!! Needless to say, I got a monthly wax for my whole Tamoxifen journey. Now being almost a year off, that lovely SE seems to have gone away if that helps you any!

I use something called VMagic for vaginal dryness, suggested by my GYN. It definitely works, but you have to use it every day, which is fine because it is all natural and very soothing. A definite improvement during sex.

Buttercup, You are most definitely not alone! Not only have I seen others mention that but also when I need to go I really need to go. When I had a hysterectomy a few months ago my surgeon, who is a uro-gynecologist, also checked my bladder while I was anesthetized and reported everything looked normal so I can't t blame it on having an old bladder! The urgency also seems to have increased on Tamoxifen, but for me it's a small price to pay to prevent a recurrence. I try to pay close attention to the signals but some days even that does not fully prevent " accidents". Thank goodness for good panty liners. Suspect the urgency is related, at least in part, to the amount of water I'm drinking to avoid constipation -- at least that is working!

Good news to report I got my MRI results and everything came back clear and normal! So happy!!

I see my GYN on Wed to go over my pelvic US results. Hope for more good news on that front.

Wishing everyone well.

Hugs,

Sara

thank you Cheryl! How have you been doing? Any Improvement and how are your boys doing.

Wishing you well hugs,

Sara

Well said, Runor.

new to this group, obsessively worrying about stopping Wellbutrin in order to go on tamoxifen, and reading the last couple pages of posts: Has anyone thought about what drugs might be available if the selection of meds made men’s penises have the symptoms of vaginalatrophy (I’m not talking about erectile dysfunction, they already have a pill for that) and their joints hurt so much they couldn’t put pressure on their knees for sex? We deserve better.