Tamoxifen: Just wanted to update everybody on my... - My Ovacome

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Tamoxifen

airfemale profile image
15 Replies

Just wanted to update everybody on my progress with Tamoxifen. I have been on this drug now since October. I am doing well no progression and my CA125 is stable. It is working well with me and I am tolerating the drug. I just have to exercise more. I am so grateful that I seem to have been given more time in this healthy stage. I don't know if anyone else in our community is trying it but I am proof that it is worth considering. Sharon

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airfemale
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15 Replies

Hi Sharon, well that is brilliant news long may this remission last. Mind yourself and take care

airfemale profile image
airfemale in reply to

I really appreciate that. Just wanted everyone to know about different approaches to OC. I am really interested in what everyone else is doing.

in reply toairfemale

Well my last scan stable in October and back for review in two weeks. I am not sure what options are there are the moment, they are trying out the Parp inhibitors at the moment but on a trial basis. I finished two years of Avastin in Oct and my onc thought it was a good time to stop then

airfemale profile image
airfemale

I guess this disease is really like trial and error. I have a friend now who is going through the early stages of this all. What do you say to make someone feel better? I appreciate everyones support.

Jac112 profile image
Jac112

I too have been taking tamoxifen since March 2015 - with no ill effects! I have had Ovarian Cancer diagnosed in April 2014 - had surgery and chemo. Subsequently, I was found out to have the faulty BRAC1 gene and now at high risk of breast cancer. My BRAC1 nurse suggested taking tamoxifen for 5 years as it can decrease the risk of breast cancer by 40% usually - but the trials have not been carried out in BRAC1 people. So as I don't seem to have any side effects I am more than happy to take it if it helps to reduce my risk of cancer popping up somewhere else!! Good luck to everyone else taking it for the same reasons!! Xx

foss54 profile image
foss54

Hi Sharon, Very glad to read your good news. I was on Tamoxifen from last Spring, and it kept the cancer at bay until November, so I had a great summer and autumn. Now the cancer is back, and I start chemo, on Tuesday. I hope your treatment works for ages! Eileen x

airfemale profile image
airfemale in reply tofoss54

Me too. Thanks so much you have given me a lift. X Sharon

Leeds2015 profile image
Leeds2015

The doc has mentioned his to me if I wanted to take something for prevention. I had originally asked about Ibruprofen but he has advised tamoxifen.

Lost4Words profile image
Lost4Words

I had BC in 2011 and was taking Tamoxifen when I was dx with OC in 2012, I'm still taking Tamoxifen and am currently on my 3rd OC recurrence. The good news is I'm 4 years NED with the BC :-)

In BC Tamoxifen is given to those that are ER+ (Oestrogen) or PR+ (Progesterone). Do you know if you have been tested to show this is the case with OC or is it down to the type of OC. Just curious.

Di16 profile image
Di16

I think breast cancer tablets are only given if the OC is hormone receptive (please correct me someone if I'm wrong). I have so far not taken Tamoxifen. But in 2013 I took part in a trial with Arimidex, another BC drug, & they had to check a sample taken from my original tumour to make sure it was hormone receptive before I could have it. Unfortunately it didn't work for me, so it was discontinued. But I have now been taking another one, Exemestane, since last April, & this one is working. 3 of my 4 tumours have reduced in size.

Di

airfemale profile image
airfemale

I was diagnosed as hormone receptive this is probably why the tamoxifen is working for me. I guess it all is a matter of educated guesses. X Sharon

Leeds2015 profile image
Leeds2015

My onc has said that my cancer isn't estrogen sensitive, but it is still suggesting it. What side effects have people encountered and what brand are you taking? Thanks

airfemale profile image
airfemale

Hi Leeds 2015, I am just taking Tamoxifen. It comes in many brands my pharmacist keeps swapping me around as they run out of one brand. My side effects so far are some hair thinning but that is very minor. Some joint pain. I walk most days so that helps with that. Some numbness but my onc believes that is from the taxol. I am a bit tired and I am getting a bit moody. All these things are minor compared to the fact that I am stable and no progression. Sharon

Jackie0 profile image
Jackie0 in reply toairfemale

Hi, just reading some back posts about Tamoxifen and wondered how you were doing? I gave been taking them for three months now and the modules on my lungs appear to have stopped growing!! For how long I wonder?

Love Jackie O xx

airfemale profile image
airfemale

Hi Jackie, what can I tell you. I was on Tamoxifen for 6 months with some side effects. I unfortunately progressed. I have been doing Carbo/Gem now since April. I hope you have better luck than me. Love Sharon

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