1735

[1735]

Hi there I’m thinking of coming off tamoxifen... the side effects are horrendous.. I’ve been put on different drugs but same effect.

[Jowigs]

Hi 1735.

I am also on Tamoxifen and have horrid side effects. I had awful pain in my legs, but admittedly that has eased and they’re now just very stiff. The flushes are worse some times than others but manageable. I just feel so old, like I’ve aged 10 years. The worst bit is that my husband and I can no longer have penetrative sex, it’s just too painful. I’ve tried all sorts of creams etc, even a prescribed one but nothing helps. However, I’m alive. Have you spoken to your oncologist? They might be able to tell you what the risk is of coming off it in specific terms which could help you decide. It’s a big decision but I suppose you have to take into account your quality of life. I wish you all the best, whatever you decide.x

[Debs1962]

Hi

Have a chat with your doctor, they could change you to a AI instead, or a different brand of tablet.

Deb x

[Moirs1964]

I had to come off it too. I had an in depth discussion with my oncologist and it was decided to have yearly scans and be extra vigilant. I decided I wanted quality of life and to enjoy it as best I could after side effects of treatment and mastectomy- I’ve no regrets and I’m 5 years now since being diagnosed and my recent scan was excellent .

I’m 54 so was an easy decision for me. I think you should discuss every detail of your type of cancer, grade, stage, etc etc and weigh up all the positives and negatives. Best of luck.

[1735 in reply to Moirs1964]

Hi moirs 1964....I think what you have said is just what I wanted to hear.. thank you ♥️

[marybv]

Hi 1735,

I co-facilitate a support group through SHARE (sharecancersupport.org/) called "Coping with Tamoxifen and Aromatase Inhibitors" if you're interested. It takes place at:

165 W. 46th Street

Suite 712

NY, NY 10036.

If you're not local, you can call in:

Dial: 712-770-4700

Enter Access Code: 603529

The schedule is:

July 19th, 6-7:30 p.m. ET

August 16th, 6-7:30 p.m. ET

More dates soon!

I hope that you are able to join us!

[1735 in reply to marybv]

Hi there I’m in Scotland. Thanks

[marybv in reply to 1735]

Oh. Well, maybe SHARE will have a webinar or Facebook Live event that you'd like to "attend" one day, sharecancersupport.org. Take care and good luck!

[nikonBlue in reply to 1735]

Hi, where in Scotland are you? I'm in Fife. I've been on 3 cancer meds now as the side effects were just too bad. Been on Exemastane for about 7 months now and do still feel twice my age with the pain and flushes but I just about can cope........most days! I realise I'm very lucky to be here and I see so many who lose this awful fight but I also feel that I want some quality to life which is hard when your every day is ruled by these relentless side effects.

Stay well,

Blue x

[1735 in reply to nikonBlue]

Hi there nikonblue... I’m in Airdrie I just feel so embarrassed as the water literally just runs down my face neck and hair is always a bloody mess x

[nikonBlue in reply to 1735]

Yep, I know exactly where you're coming from. I look like I've just stepped out a shower but without the feeling clean bit! I am now on my 4th t-shirt of the day! It makes me so exhausted all the time too. Am sitting in front of the fan now and it's on for most of the night, every night. You are not alone, honest. X

[1735 in reply to nikonBlue]

Nikonblue...the feeling of salt on my brow and my ears 😩😩😩had my haircut so short can’t go any shorter, work in Tesco and when I feel a flush coming on just want to throw myself in a freezer 😂😂😂

[louisa73]

Hi there have you tried different suppliers of tamoxifen? I have been on it for 4 yrs now at first side effects were not nice but have learnt to cope with them but if i have them by supplier wockhardt they are much worse. all the best x

[1735 in reply to louisa73]

I have tried them all thank you

[Iknitandstitch]

Hi

I was put on Letrozole and boy did I suffer muscle pain and I only had to walk,upstairs and I was soaked ! Changed to Tamoxifen after just 5 weeks and an immediate difference no joint pain but as time lapsed the flushes got much worse - I have just complete an 8 weeks course of "ear acupuncture " which is a long term study of women suffering the flushes - in conjunction with Macmillan this was a my local Macmillan centre and I have to report I am a lot better unfortunately they have not gone completely but have reduced in number and severity I also take 10mg. tablet twice a day which has also helped

Diane