Tamoxifen experiment

Leah · Post by **Leah** » Thu Jan 15, 2015 10:20 pm

An update: I am going off my prescribed Tamoxifen for a couple months to see if it is the culprit of my latest gut woes. It seems to me that once I started the drug ( about 4-5 months ago) my gut has gone through "stages". First, my stools were perfect and I felt great. Then, I started getting a small "hard, painful to the touch" area below my bellybutton. That area has since grown so that now , my whole lower abdomen is a hard mass and very uncomfortable ( although my stools remain perfect). I have to say that having this on top of the other side effects from this drug is really getting to me ( sleep is pretty bad because of ongoing night sweats). I'm just not sure that taking it to lower my breast cancer recurrence is worth how it's making me feel…. and how it will be for the next ten years if I continue.

Right now, I'm just seeing if my gut will feel better without it. If I DO feel better, it just goes to show you that hormones have an effect on MC ( TAMOXIFEN BLOCKS ESTROGEN RECEPTORS)……... Then I will have to have a pow wow with my oncologist. These decisions are so hard to make sometimes, but quality of life has to count for something, doesn't it?

Leah

JFR · Post by **JFR** » Fri Jan 16, 2015 7:08 am

Leah,

I am sorry you are having so many problems. I agree that sacrificing the quality of your present life to avoid a risk further down the road isn't always the best choice. The quality of your present life matters and it is your choice to make, whether or not to take tamoxifen. I hope life gets easier for you.

Jean

ldubois7 · Post by **ldubois7** » Fri Jan 16, 2015 12:30 pm

Leah,

It is a highly personal choice you are thinking about making, but my experience with any drug has been disheartening at best. I believe our bodies have a innate intelligence and if you're experiencing discomfort & pain in your everyday life, I'd suggest that you listen to your body, and go off the drug and see what happens.
Quality of life is important....as you know.

Best of luck & I hope you feel better soon! Keep us posted.

Thumbs · Post by **Thumbs** » Fri Jan 16, 2015 12:35 pm

My mom had breast cancer and was on that drug for some time. It caused her MAJOR issues. She finally stopped it and has been taking Metagenics IC3 I believe. Her Estrogen numbers stay low to 0. She has been cancer free for 8 years.

Polly · Post by **Polly** » Fri Jan 16, 2015 12:40 pm

Hi Leah,

Makes sense to D/C it and see what happens. You might want to consider low dose (20 mg) or topical tamoxifen treatment instead of nothing. I don't know if they are commercially available yet, but I think there are some promising ongoing studies.

Hope you feel better quickly.

Polly

Sheila · Post by **Sheila** » Fri Jan 16, 2015 6:03 pm

I have nothing to offer but encouragement and good wishes, Leah.

SheilaW

:bigbighug:

Gabes-Apg · Post by **Gabes-Apg** » Fri Jan 16, 2015 6:16 pm

Along with the others... listen to your body, do what you can handle.

Keeping inflammation minimised is one of the best things you can do to minimise the risk of cancer returning....

UkuleleLady · Post by **UkuleleLady** » Fri Jan 16, 2015 8:58 pm

Best wishes for continued remission, Leah. Let us know how going off of it affects these symptoms.

Nancy