Hi there,
I am awaiting results after mastectomy (high grade multi focal DCIS) and even in the best case scenario will probably have to go on Tamoxifen. I’m pretty scared of this as the last time I went on a hormone I was incredibly ill and disabled by it (bedridden for 6 years) as I have ME.
Is there anyone out there who also has ME/CFS who has had experience with this hormone?
L x
Hi flaxhigh
Whilst you are waiting for the other forum users to reply with their experiences you may find it useful to read the breast cancer care information leaflet on tamoxifen. This can be found by following the link below:-
breastcancercare.org.uk/docs/tamoxifen__november_06_0.pdf
If you would like to talk further please feel free to contact the freephone helpline where you can talk to someone in confidence about your individual concerns. The staff on the helpline are either breast cancer nursers are have experience of breast cancer and you are able to talk about both technical and emotional issues.
The number to ring is freephone 0808 800 6000 and the lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.
Kind regards
Sam
BCC facilitator
Hi Flaxhigh
I was diagnosed with CFS/ME two years ago and BC in March. After all the treatment I started on Tamoxifen in September, I unfortunately had terrible side effects and the onc took me off them three weeks ago and I am now on Arimidex and feel tons better.
I do not know if there is any connection.
Hope this helps
Regards
Jane
Dear Jane, thanks so much for replying. I have just lost my long message to you!
Can you tell me more info about your ME and your cancer? ALso your age (I’m 42 and pre-menopausal) and if you were okay - if you have kids - with pregancy. I am trying to guage if taking this hormone will affect me badly or not. What were the side-effects of Tamoxifen? I hope you don’t mind me asking all these questions - and also, how long were you on it for before you said, enough is enough.
Thanks so much Jane - I’ve got to rush off as my 2 year old is calling!
Sending love and thanks in advance!
L x
Hi Flaxhigh
My ME was caused mainly by stress 24/7 work and a 95 year old mother in law who was very poorly. Just had total physical collapse and could not recover. I attended a course at Cannock Hospital which has helped a lot. I still get tired but i think I am recovering. The DHss doctor gave me 18 months in January (before the Cancer diagnosis) and I hope by the time I go to see him again in June next year I will have improved even more.
I had grade 2 cancer with 1 node, had chemotherapy, radiotherapy and then Tamoxifen. I tried it for 2 and half months but I was getting hot sweats 8 or 9 times each night and every hour or so during the day. I also felt very tired and had (still have) facial hair. I would make a good father christmas!
I am 55 and post menopausal so the oncologist took one look at me 3 weeks ago and stopped them straight away. I do not have any children unfortuately.
I hope I have answered all your questions.
Kind Regards
Jane
Dear Jane,
Many thanks for your reply - sorry to have asked all those questions but it is very useful to know - also if you were pre- or post menopausal. I don’t even know if they use anything other than tamoxifen on pre-menopausal women. I guess I will have to try the tamoxifen and hope for the best. Were you very sick on it, I wonder? That worries me a lot…
Do hope you have the cancer under control - what a blinking awful 2 years you have had!
Sending lots of healing vibes…
L x
Hi - don’t know if this is any help, I am pre-menopausal (just) and had children. Diagnosed with grade 3, 20 lymph nodes affected, had chemo rads etc. however I have been perscribed Zelodene (or is it Xelondene ??) implants on a monthly basis and Arimedex. These are not hormones, there role is to turn of all your oestrogen production and so starve any cancer cells.
Me - I do feel very tired and ache all over have hot flushes and little appetite - this may be a hangover from the rest of the treatment.
I don’t know how this will affect your ME, but may be worth having as an alternative to Tamoxifen.
Good luck Swanie
Many thanks Swanie. Do hope you are feeling more like yourself soon. And a happy Xmas!!
L x