Hi Ladies
After a little of your invaluable advise if I may?
Been taking tamoxifen for 4 months now but have now been advised to stop taking it as I’ve blood clots in both my lungs. Does anyone know of or is taking an alternative to tamoxifen? It’d be good to know before I see my onc next week.
All the best
Deb x
Hi Deb
I know that there are alternatives if you are post-menopausal, don’t know about pre-menopausal!
Hopefully someone will be along soon who does.
Dx
Thanks DJ
I am pre-menopausal (only 42). Finished my chemo at the end of May and have had 2 periods since (September and October).
Really hope someone has been in the same boat?
Deb x
tamox is only drug for pre meno. only option would be to have ovaries removed and then can take one of the ai drugs. or possibly zoladex (to shut down ovaries) and an ai.
Yes, as Lolly says you would need to be put in a chemical or surgical menopause before taking one of the aromatase inhibitor drugs such as femara or arimidex. Chemical would be by monthly Zoladex injections to shut down oestrogen production. I would imagine that this would be the likely approach rather than the surgical approach, having them removed through an operation or, more rarely, by radiation.
The advantage of Zoladex over surgery is that, once the relevant period (usually 5 years) of taking the AI has passed and the risk is acceptable, then, if you are still pre menopausal you can go back to that status. With surgery it is irreversible.
One reason why this is not the first line of treatment for pre menopausal women is that shutting down oestrogen production has an impact on bone density and there are also other side effects related to early/artificial menopause (some of which some women also seem to experience with Tamoxifen too). One frequent side effect of the Zoladex/AI combination is joint aches.
Hope that helps. I am on Zoladex and Femara, age 37, as Tamoxifen failed to prevent a recurrence in my case.
Claire2010
Hi furball,
Am in exactly the same boat as you, 41 & pre menopausal & have been taken off Tamoxifen due to a blood clot.
I am now on Zoladex & Letrazole (had 2nd injection yesterday) & all seems to be well,no se’s to speak of thank goodnessbut reallise its early days.
I ended up doing loads of research & asked loads of questions so please feel free to pm me if you have any questions.
Sarah.xx
Sorry to butt in, but am now focussing on every part of my body wondering if i have a tamoxifen induced blood clot there! How did you find out you had blood clots? Sorry to hijack, as usual, humble pie. Hugs to you both xxx
Me too…how did you know???
Mine is from my picc line so is in neck/collarbone area & presented itself by a hugely swollen arm from tips to shoulder & a very tender area in my neck.
Sarah.xxx
P.s meant to add that although mine wasn’t a result of the Tamoxifen itself they still stopped me taking it as they consider now that i am at risk by already having had a clot & Tamoxifen carries a small risk of clots.
That’s great info ladies - certainly gives me something to discuss with my onc.
For you blood clot ladies - are you on warfarin?
Tors/Lostinfrance - my blood clots were diagnosed in February during my chemo. Crept up on me all of a sudden - mega pain in my right side which got worse over a period of 6 hours. Reached a point where I couldn’t breath and CT scan confirmed multiple bi pulmonary embolisms (blood clots) in both lungs. Injected tinziparin from Feb to Sept. Stopped tinziparin beginning of Sept. Pain came back and breathlessness. Further CT scan confirmed new blood clots again in both lungs. So onc has said safest to stop tamoxifen (which scares me because I use it as my anti-cancer comfort blanket). I’m also due to have a scan in November to try and establish what may be causing the blood clotting.
On a postitive note - I’ve got my ATOS medical on Saturday 5 November…;-/
Deb x x x
Hi Furball,
am on daily clexane injections, had a chest Ct scan last week so am awaiting results to see if clot has gone.
Sarah.xxx
Thanks Sarah - good luck with the CT scan results. You’ll probably find though that the scan will show that they’ve dissolved. If they have and they decide to stop your blood clotting meds, keep an eye on the symptoms you had when you first got your clots. You don’t want to be ain a position like me where they stop it, and then your clots come back and you aren’t given meds again.
Deb x x