Anyone currently taking tamoxifen for OC.

[ShropshireJo]

Hi everyone

Hope the snow and bitterly cold wind aren’t causing you too many problems wherever you are.

I could really do with some advice. Had the results of my most recent scan on Friday. It’s now 14 months since I finished chemo for first recurrence (which was 8 years after original diagnosis) and there are signs of disease progression though not sufficient to warrant more chemo yet. However, the Onc suggested Tamoxifen and I wondered if anyone here was taking it at the moment and if so, what side effects it may have. I’ve done some online research though there is little about this drug for OC. I checked back at past posts on here and gained some info from them too but anything anyone can tell me would be gratefully received. Not looking forward to even more hot flushes! Compared with what some of our sisters here are dealing with just now, feeling hot is very minor!

Many thanks

Jo x

[CharlotteSo_UK]

Hi. My Mum was using Tamoxifen for her low grade OC and did not experience any significant side effects. Maybe some pre-menstrual like symptoms but she says it was nothing drastic or unmanageable. She's not on it any more as her cancer has slightly progressed (grew marginally but was clear evidence). Letrozole (same sort of side effects) kept her stable for 5 years.

Good luck with it.

x

[ShropshireJo in reply to CharlotteSo_UK]

Thanks, that’s really helpful. x

[Di16]

I had tamoxifen for a while, & found it quite easy. I had been warned of possible hot flushes, but they didn't happen.

[ShropshireJo in reply to Di16]

Thanks for your encouraging reply x

[Btte]

Hi Jo no experience of Tamoxifen but have been on Letrozole since August 2017. Coming to terms with the side effects fatigue hot flushes headaches. Last scan showed stable tumours. Diagnosed July 2012. Love Bridie

[ShropshireJo in reply to Btte]

Hi Bridie

Thanks for replying. Do you have any idea why they suggested letrozole rather than tamoxifen? Love Jo x

[Madmarilyn]

My specialists are trying to decide if Tamoxifen or Letrozole are good options for me as surgery doesn't seem to be working as well as they'd hoped, whilst I sit & wait! I have granulosa cell tumour but they think the tumours look 'different' now!! Maybe we can trial it together & let each other know how it goes? Thanks to all of you who have posted good things, as I'm not sure if I want the news I'm waiting for, but it has to be better than this uncertain limboland!!

[ShropshireJo in reply to Madmarilyn]

Yes, it would be good to compare notes. Limbo land is hellish. At least when you get an answer, you have some idea of what you are dealing with. Hope you don’t have to wait too long. I started out with Stage 2c poorly differentiated serous papillary OC (what a mouthful, I usually have to look it up!) then it changed to adenocarcinoma endometriod type on recurrence. More than a bit confusing. All the best Jo x

[Maus123]

Hello Jo. I used Tamoxifen for about 5 months last year, and was able to carry on with my full time office job. Side effects for me were mild but still noticeable. I was more prone to muscle cramps and about half of the time I felt slightly nauseous.. not bad but still there.

But everybody might react differently.

Hope this helps. All the best with your treatment.

Maus

[ShropshireJo in reply to Maus123]

Hi Maus. Thanks for your descriptive response. it is very helpful to get an idea of what it’s like. Love Jo x

[chrissapam]

I know someone who is ...originally part of a trial I think...hope she'll get in touch...will make sure she sees your post! Chris x

[ShropshireJo in reply to chrissapam]

Thanks Chris. The more info I can gather the better I’ll feel. Jo x

[chrissapam in reply to ShropshireJo]

...have told my friend and she said she would post.....hope she has! C. Xx

[ShropshireJo in reply to chrissapam]

Yes, thank you very much for contacting her. She was kind enough to send me a detailed message which I found very helpful Jo x

[chrissapam in reply to ShropshireJo]

great! x

[PearlyPearl]

Hi Jo, I was on tamoxifen for about two and a half years after surgery for stage 3c low grade OC, in order to slow down any recurrence. Eventually it stopped working and so there is now recurrence which is not operable so my oncologist has switched me to anastrazole in hopes that this will slow down progression. I'm afraid I found the tamoxifen hard going, the hot flushes for me were very frequent and very uncomfortable. My onc prescribed me clonidine to help reduce the frequency and severity of them although I can't say this was a great help for me. I think there is an antidepressant that they can prescribe to help relieve them too but i didnt try that. I found it also made facial hair worse I'm on quite a few meds for other things so any other tamoxifen side effects will have got lost amongst them. I've got to say that the side effects must have been worth it because it all probably prolonged my life. This is all just my experience though and you might fare much much better. I agree there isnt that much info out there about tamoxifen for OC, but I expect the side effects would be the same in BC patients so you could possibly look at some BC forums. Good luck.

[ShropshireJo]

Hi Pearl. Thanks for your detailed response. I will look on BC sites to see what more I can glean. Sounds pretty much like a second menopause! Sorry that you had a difficult time with tamoxifen. Not surprised by your comment about facial hair. I guess I’ll be making more frequent appointments with my threading lady😏 All the best Jo x

[Hidden]

Hi Jo - Chris rang and mentioned your tamoxifen dilemma. When I started on my journey 8 years ago I was put onto Letrozole 3 years it held the tumours. Then I had blockage (tumour stuck on intestine)had surgery + ileostomy then 4 rounds chemo (carboplatin) which knocked it back. Then the dreaded change of Oncologist and being in limb, then more Chemo+ and surgery which didn’t work so referred to the Marsden for the LoGGs trial but had an issue so wasn’t suitable - one of the trial alternative for non trial drug was tamoxifen, which I have been on for 10 months now. With the letrozole I had very few side effects- think I would have stayed on it but for the blockage. With regard to Tamoxifen I have experienced mild hot flushes (power surges as my husband calls them) usually about bedtime. The Oncologist recommended taking the tablet same time each day and with a meal (super time) so I think the hot flush is a delayed reaction. Whilst I have experienced some nausea it has only been this week I have had the need to take a tablet. The biggest effect I have found as the months have gone on the sheer tiredness, but I tell myself that is age (70) and longing for warmer weather!

Apologies for the saga but sometimes you need the time line and also that the preference for a drug has moved on over the past 8 years. But with all of the above, like many of us, I am happy for having had 8 years of treatment.

So regardless either drug could help. Go well keep asking 😉Sue

[ShropshireJo in reply to Hidden]

Hi Sue. Really good of you to reply and in such detail. It helps to put everything into context. Sounds as though you’ve had a roller coaster ride but hey, here you are eight years later! Easy to say.... The info about hot flushes a couple of hours or so after taking the tablet is very helpful. Looks like Tamoxifen is the only option as Letrozole isn’t recommended if kidneys aren’t strong and mine have caused a few problems. Think I may try taking my tablet with breakfast as I don’t fancy the hot flush at bedtime! Thought I’d put menopause side effects firmly in the past. Do hope your nausea doesn’t last long. Let’s hope we get a proper spring soon. All the very best and thanks again for replying. Jo x