Tamoxifen: reduce dosage or quit?

EauClaire

I started T in late June of 2021, so I’m 8 months in. Here’s
my laundry list of SEs since then. Vaginal discharge, not bloody, and
tolerable. Intermittent pelvic pain and cramping, mild and tolerable. In mid-August, I noticed
pain in my left hip joint making it painful to climb stairs and walk
uphill.  By December this had spread to
my left buttock and lower back and I had pain bending or twisting. Aleve, my
pain drug of choice, did no good. I had my hip x-rayed, no problems found in
joint and I was given a steroid shot for possible bursitis. It did no
good.  I had a back MRI which found several
longstanding problems, (disc slippage, bulging and stenosis) due to wear and
tear and being 70 years old. I started PT about a month ago and see progress in
that I can bend and twist and climb stairs better. 

Other SEs: depression, moodiness, crankiness, and hopelessness;
 general fatigue and lack of energy.  AND, finally, in mid-December I began to
notice my hair thinning and this continues. I’ve seen my oncologist twice since starting T and discussed
with him all the SE’s I’ve mentioned.  He
conceded the depression, hair thinning and tiredness could be attributed to T,
and did an iron test, which showed no deficiency.  Recommended an anti-depressant;  says back pain is not due to T.  

 I asked if T came in lower
doses; he said no.  Based on what I’ve
read on these blogs and others, it’s obvious that many women either quit T (and
the other anti-estrogen drugs) entirely, or reduce their dosage, regardless of
what their onco says.  I’m considering
halving my dosage, and I’m considering Rogaine. I do have some concern about
deviating from the standard because I had micrometastesis in one lymph node out
of two. My Onco DX score is 17, so chemotherapy was ruled out (thank god).  I’d love to get feedback from anyone who
lowered her T dosage or quit it. Also does anyone know if Rogaine is
contraindicated if on T?  Any insights
would be welcome. THANKS.

Beaverntx

EauClaire, I have just quit Tamoxifen after 3.5 years due to SEs (many of the ones you listed). Took a month's break twice (each time after taking T for 18 months), SEs came back faster the second time, tried taking every other day (effectively cutting the dose in half) with little relief. Prescribing physician agreed I had sincerely tried to tolerate T and quality of life is important. A major factor in my decision was that, at age 81, there are things I want to accomplish that just were not happening with the side effects.

BTW, Tamoxifen does come in 10 mg pills.

Feel free to contact me if I can be of help.

Rah2464

EauClaire - I hear you it is a surprisingly hard little drug to take. What has helped me the most is taking 10 mg twice a day (yes, it comes in a 10 mg pill). The fatigue and lassitude are tough to crack. I have found that walking for 30 min every day is the only way to counter it, and still I can have days that are entirely unproductive. Side effects can definitely come and go with varying intensities. I have not been able to discern a pattern.

There are other SERMS to try, or an AI. If your current MO won't work with you to manage the treatment, you may have to find someone who will.

As far as the hair thinning - an option instead of Rogaine is Rosemary leaf oil. There was a study that showed it to be as efficacious as Rogaine. I use it along with a laser treatment. It has reduced the massive shedding at least.

EauClaire

Thank you so much for your response, Rah. It's heartening to hear from others who can relate to my experience. You obviously have a lot of experience. You are so right that SEs come and go in varying intensity. Thanks especially for the tips on hair loss. Are you using one of those laser helmets? If you can provide more information that would be great. Best wishes. EC

EauClaire

Thank you so much, Beaverntx. I appreciate your information, even though it doesnt look good for my plan of halving the dose. Or for quitting for awhile. I heard that some OMs have recommendedl that, saying the SEs might go away, but hadn't heard if anyone did and the results. This drug must invade our systems and refuse to budge. But I'm inspired and heartened by your strength and determination to do the things you want to do. Thanks again for reaching out. EC

Beaverntx

EauClaire, the half life of Tamoxifen is about a week; that is, from the dose you take today about half of it will be in your body in a week. That is why you can take a month or so break from it and still be receiving some of the benefit from it. I, too, found the SEs were cyclical without an identifiable pattern. Were I younger I likely would have continued to struggle to tolerate the SEs but I finally decided I was losing too much productive time (at 81 don't know how much of that I have left but want to make the most of it and depression and brain fog were certainly not helping). Please do note there are other options available for you to try should you wish to.

Halving the dose may well work for you. I had some other medication reactions going on which probably had a part to play in my decision. Note that taking a month long break did keep me going twice and might well have worked without the concomitant health problems that arose a few months after the second break.

I wish you the best as you explore your options and work out what is best for you. It is a personal decision!!

Jons_girl

beaverntx is correct. Going on any hormone blocker is our choice. I chose not to go on one. So far I'm ok. 5 yrs post cancer this year. I'm not saying my decision is what others should choose. Just sharing. So sorry you've gone through so many SE.

Rah2464

EuaClaire - I use the Theradome helmet. It is a wild looking thing but it does help. Sorry you are experiencing side effects to the level you are, it is difficult. I will echo Beaverntx's statement that I as well have taken two breaks - one for surgery and one because I wanted to enjoy a huge Thanksgiving which I cooked . I only did two weeks off and wow what a difference for me. Provided the energy to keep going. I am 3 1/2 yrs out and trying to push through the other year and a half. Hope they don't come back and tell me I need to go five more that might be a hard stop but who knows. The point is, speak with your MO, try a break if you must have it.