Q about coming off tamoxifen after 5 years, BMX

Fearlessfoot

RE: 5 years tamoxifen, after DX early stage I, grade I, no nodes, ILC multifocal lobular, bilateral mastectomy (skin and nipple-sparing with implants)

Hi, Community,

I got the okay from my oncologist to go off of tamoxifen after 5 years with no signs of cancer from recent blood tests and examinations (starting in a couple weeks).

My questions if anyone can share with or inform me:

1) What will it be like to come off the drug? and how long will it take for it to be out of my system?

2) Ever since my BMX and going on tamox, I've been so healthy in terms of no colds or viruses (or if I felt the beginnings of something, I could easily chase it away with a few doses of apple cider vinegar). I had this crazy notion it was the tamox keeping me strong. Has anyone else experienced that or know of any evidence base? I'm afraid I'll be more susceptible to colds/flus after I go off.

3) I have had side effects of night sweats, hip joints aching, leg/foot cramps, weight gain, and leg swellings -- but these could also just be caused by menopause, arthritis, and aging. I am 57. Do you think these systems will diminish?

The recent studies showing benefits of 10 years on tamoxifen -- but my onco says it is safe for me to stop tamox because these studies don't really apply to me because the studies included persons all stage levels. This is due to my early stage and reduced risk since little or no breast tissue was left after BMX. Do you buy this? (I should go read the study itself, which i will eventually, but I would still appreciate the forum's personal views.)

Thanks,

Fearlessfoot

Falconer

Hi Fearless,
Congrats on your five year mark. I'm just at the beginning of this journey myself, but I've heard a lot about the Breast Cancer Index test.
https://www.breastcancerindex.com/
If you're unsure about your risks, perhaps your MO could order this for you.
Best to you.

jwilco

Hi Fearlessfoot! I also only did tamoxifen for five years. Ended it this last November. I consider myself very lucky, but still sort of miss the security. On tamoxifen I had terrible leg cramps and a lot of night sweats (I'm 53 and still not completely in menopause). Since I stopped the leg cramps have improved a lot. I do take Effexor for hot flashes but I'm thinking of easing off that to see if they are better now.

farmerlucy

I stopped Tamoxifen a month ago at four years. Honestly there hasn't been much relief in the joints, which is disappointing. Hot flashes are better. Weaned off Effexor by taking out five beads extra each day over a week or so while starting Prozac 40mg. I was concerned about getting off Effexor, but it worked out fine. Good luck fearless.

Fearlessfoot

Dear jwilco,

Thanks for your message. Yes, I too will miss the sense of security of being on tamoxifen but hope to feel better in general after going off of it. I took a magnesium pill every evening for the last 4 years, which helped my severe foot cramps which were waking me up in excruciating pain at night.

Fearlessfoot

Fearlessfoot

Dear Falconer, thank you so much for the reference to the BCI which was news to me. I live in Switzerland where the oncologists are reluctant to test, it seems, and very old-fashioned in general. I asked for the Oncotype DX or MammaPrint in 2012 (the only tests I knew at the time) and my onco said they were not available in Switzerland and anyway, I was not eligible. Also I would have to pay for it myself (insurance wouldn't cover it). I am not a wealthy person and could not pay out-of-pocket even more than I already pay for health insurance and costs.

So now I will ask him anyway about the BCI test.

I have friends here and all over the world, who have already died or are currently dying from metastacized BC. Money cannot always save your life. I know many who had "top quality" Swiss medical care, but still died from BC and other cancers. However, the poor have it even worse (compare BC survival in high income versus low income countries).

I am grateful to be alive and relatively healthy and I have been trying to figure out how to help others. This forum provided much info and support and I tell everyone about it in my lectures wherever I go. Thank you, everyone, and hope one day we will understand and be able to prevent or better cure cancers. There is much promising research going on, but unfortunately it takes a long time to trickle down to us and in the meantime, commercial interests and the medico-cancer industry, are not really incentivized to speed things up or scale up to be able to offer lower prices.

Fearlessfoot

Dear Farmerlucy,

Thank you for the posting and encouragement. Sorry to hear not much relief yet on joints but maybe a month is too soon to know? Also I never know what is arthritis-related vs. Tamoxifen-related. Sometimes it takes so much energy to get to the bottom of a health problem that it is easy to put it aside and just live with it. I'm glad you are taking charge of your medications (Effexor) to find the best solution for you. Best of luck to you, too.

Fearlessfoot