Advice please: Hello everyone, I hope you are as... - My Ovacome

My Ovacome

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Advice please

dryden1 profile image
7 Replies

Hello everyone, I hope you are as well as you can be in these uncertain times. I had to stop Niraparib 6 weeks ago because it had stopped working for me. The oncologist said in normal circumstances he would have started me on another chemo regime but due to clovid he Didn,t think that was a good idea and therefore started me on Letrozole 2.5mgs . Which I am really unsure about will it keep the cancer stable.I have got some abdominal discomfort and taking regular paracetamol. He is going to review me in June .

Also when I was on Niraparib I got the letter to say I was at high risk and that I should stay at home but seeing that treatment as stopped am I now able to go out to exercise as long as I maintain social distancing.

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dryden1 profile image
dryden1
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7 Replies

Hi - I was also on Niraparib until a couple of days ago, a CT scan and rising CA125, confirmed it has not worked for me. My oncologist is starting me on chemo next week. I dont have any experience of Letrozole, but am sure someone on here will come along soon and advise you.

Artgreen profile image
Artgreen

I’m on letrozole which has kept me stable for a year. Many people on our low grade serous carcinoma Facebook group are on it as first choice after or instead of chemo. It’s a hormone blocker so second menopause for me. Yay! It has kept some people stable or shrunk tumours for many years. Side effects are muscle /joint pain which goes when you move so best taken at night. Good luck with it! Definitely easier than chemo!

Best wishes

Alex x

Kkaren profile image
Kkaren

Hi following chemo I took letrozole for a year until it stopped working. I was then changed to tamoxifen which I had no end of problems with. To cut a long story short the side effects I thought were coming from the medication was actually the cancer playing up again. Four months down the line back on chemo. I had no issues on letrozole apart from discomfort in one shoulder. Tolerated it well just wished it had worked a bit longer. X

Ruebacelle profile image
Ruebacelle

Yes exercise wear a mask respect distancing

Di16 profile image
Di16

I’ve been taking Letrazole for 2 years, & it was still keeping my cancer stable at the last scan, though I’m overdue for my next scan - delayed due to Covid 19. I have received a letter from the nhs about shielding, I’m also diabetic, though it’s well controlled at present. Di

Haeh profile image
Haeh

I have been on Letrozole for 16 months and so far so good. Had hot flushes, headaches and aches and pains for first few weeks, but either they got better, or I got used to them. Last scan was reported 'stable'.

Still waiting for my shielding letter, but this afternoon a box of food was left outside my front door, so I assume I'm meant to shield! Best wishes.

dryden1 profile image
dryden1

Thank you so much for All Your advice you have reassured me about letrozole

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