Tamoxifen Revisited

Hello, everyone!

I just had my CA125 test, and my number dropped from 54 to 52. I have been on a diet of no animal protein and no soy since Feb. 4. I asked my doctor if I could get off the Tamoxifen for a trial because of my concerns about the side effects. Of course, any pharmaceutical links will play down the side effects. But I have come across other evidence that Tamoxifen can be carcinogenic to the liver, cause your vision to go bad and cause blood clots.

My doctor seems to think that Tamoxifen is not as bad as I think, but he said I could go off of it if I was that worried.

So, I am going off of Tamoxifen today and I will continue on this vegan diet and see what happens on April 1 when I get my next CA125 test.

All I can say is WOW... had no idea of the side effects... My mom was on it post breast cancer for 5 years and when my gyn/onc wanted me to take it , she voiced her opinion... Needless to say, I did not go on it.. Her main problem was acid reflux... never had a problem with it until she went on the Tomoxifin.

I took myself off Tamoxifen after four years. I was taking it because of my sister who had BRCA made me high risk for BRCA and my gyn advised it. I got tired of the terrible gas.

My baby sister's gyn advised against her taking Tamoxifen, and she is not taking it. What seems to make the difference with baby sister and me is that the sister with BRCA had negative receptors with her cancer, and Tamoxifen doesn't do anything for that type of cancer. The sister with BRCA has never taken Tamoxifen.

My gyn onc said my risk of contracting BRCA without Tamoxifen was greater than my risk of getting endometrial cancer because I took Tamoxifen! It sure makes it difficult sometimes to decide what to do.

Best of luck, Blue Artemis. Keep us posted on how things are going.

Well, I had my CA125 on April Fool's Day, and I guess I learned that I was a fool for getting off Tamoxifen. My CA125 jumped from 54 to 77 in six weeks. I will go back on it today even knowing the bad side effects. I will have to take my chances. I am still happy with my vegan diet, too.

Take care, everybody!

Sorry to hear your test results. As far as I know, my liver is in good shape. While I was on Tamoxifin, I had no blood clots and my vision did not go bad, so I am hoping for the same for you.

Glad to hear you are still happy with your vegan diet. I have not gone vegan but have been trying to eat more healthfully and I do feel better.

Thanks for your words of encouragement, Gerry! I just took my first Tamoxifen pill after my hiatus.

May the Tamoxifen do it's good work without any negative side-effects. Regrettably as you're aware most meds may cause some negative side-effects which usually can vary by individual but our doctors weigh this against the good they might do. I also don't think your doctor would have told you this med is not as bad as you think if he did not mean.
Pls keep us posted.

Thanks, Peggysue!

Blue Artimis,

Since you are surgically in menopause, has your doctor mentioned other options for breast cancer prevention?

The only reason I was to go back on tamoxifen was because I kept my ovaries. I was taking it for prevention after stage 0 breast cancer.

After having it wreak havoc on my uterus, I decided I'd rather lose the weight than go back on it, so I understand your wish for less RX!

No matter what, you have decided what's best for you!

Hi, Music Gal,

I am taking Tamoxifen to try to fend off a recurrence of ovarian cancer. I guess I just read too much about what Tamoxifen COULD do to you, but since my CA125 jumped 25 points after going off of it, I am going to see what happens when I am back on it. I am already feeling some of the hot flash symptoms.