Tamoxifen: Hello laydies, I was wondering if... - My Ovacome

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Tamoxifen

sara_mamani96 profile image
11 Replies

Hello laydies,

I was wondering if anyone has experience with Tamoxifen with Ovarian cancer? If so, can you please share your story. Many thanks

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sara_mamani96
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busbee3 profile image
busbee3

I took Tamoxifen for almost a year before my CA125 started to creep up. It was an easy drug to tolerate. My tumour was ER positive "strong and diffuse." For side effects, it caused some bone aches and tiredness at first, but after a few weeks, this subsided. It didn't cause hot flashes or affect my sleep. My oncologist said it takes about three months to be fully active, so your CA125 may not drop until after month 3 because of this. Once it stopped working, they switched e to Letrozole. I hope you have good luck with Tamoxifen.

sara_mamani96 profile image
sara_mamani96 in reply to busbee3

Thanks for your reply. Did you have ovarian cancer if I understood well?? How they found out your tomure is hormon receptive and what was your CA125 oncevyou start this drug? Thanks again for your info

busbee3 profile image
busbee3 in reply to sara_mamani96

Yes, I have OC, Low Grade Serous. They did a Estrogen Receptivity (ER) test after surgery on the tumor to determine if it was Estrogen positive. My CA125 had risen from 33 to 55 when I started Tamoxifen. The CA125 is often a low number with low grade. Are you High Grade? I read an article recently that suggests the level of estrogen receptivity doesn't directly correlate with how well the estrogen blockers or aromatase inhibitors will work.

sara_mamani96 profile image
sara_mamani96 in reply to busbee3

Yes, my mom is high grade. Her CA125 is 58 now. Dr asked to give a try to Tamoxifen before going back to any other chemo. But we did not know if her tumor is estrogen receptor or not.

Did your Ca125 dropped to the normal once you started that medication?

busbee3 profile image
busbee3 in reply to sara_mamani96

No, CA125 didn't go down to normal range, but Tamoxifen kept it stable for many months before it rose any amount.

BellmoreBelle profile image
BellmoreBelle

Your post points to the fact that as well as germline testing for BRCA (and other possible mutations), there is a good case for somatic testing of the tumour tissue itself i.e. where the mutation is localised to the tumour, and not carried by the genes. I am hoping that this will become routine in the near future, as we get better and better at tailoring treatment to the specific nature of the mutation itself. cancertherapyadvisor.com/ho...

1916 profile image
1916

Hi Sarah, yes I was on it when I finnised my 2nd line chemo for approximately 3months. I did find it gave me a mucas discharge but apart from that I was ok no side effects. Unfortunately it did nothing for me so I am currently on my 3rd line chemo at the moment for two lymph nodes . I hope this helps you

Love Ann x

jocascanet profile image
jocascanet

I was on tamoxifen for breast cancer. As a result, I developed the rare complication of serous uterine cancer, an aggressive cancer. fortunately, it was caught very early. no more tamoxifen for me.

sara_mamani96 profile image
sara_mamani96 in reply to jocascanet

Thanks for your input. Was your cancer due to the Tamoxifen?

jocascanet profile image
jocascanet

yes, it was. surprised everyone. It was my third cancer. I was reluctant to start it as the statistics on it didn't seem worth it. I complied though. I thought my oncologist new best.

sara_mamani96 profile image
sara_mamani96 in reply to jocascanet

what are you on now then? I am sorry that it happened to you. did your oncologist also believe that Tamoxifen could cause another cancer now? or you got second opinion to confirm That Tamoxifen has this impact?? Thanks

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