Hi

ive been on tamoxifen for a couple of months. The first batch of pills had very little in the way of side effects, the second batch was a different brand and I got calf pain, so severe I couldn’t walk so was sent to hospital for possible DVT check, all tests came back clear and was told by consultant my chances of DVT from tamoxifen are remote as i’ve never suffered from blood clots in the past and neither has any of my family. I did look on other cancer forums to find a number of women complaining of leg pain as a result of taking tamoxifen,

i am now on another batch of tamoxifen with yet another brand and this one is making me feel freezing cold all the time - I get a couple of hot flushes in the evening and to be honest I look forward to then as they heat me up :)

i have raised the issue with my oncologist and it has been decided that I revert onto the first brand I was prescribed and will be given 6 months worth.

with regards to uterine cancer, I took comfort in the studies out there that suggest 20mg of tamoxifen = “Premenopausal women treated with tamoxifen have no known increased risk of uterine cancer”. the fish is slightly higher for larger does and post menopausal women.

so my chances of breast cancer recurrence is far greater than my chances of other cancers and that is why I will always take it.

i guess one just has to weigh up the pros and cons with their oncologist and go from there.

x

Thank you so much for your reply.

I should've started these in November but couldn't bring myself to. I know I shouldn't ask but what brand is your preferred one now you've tried different ones. I know we are all different but it's interesting to know. I was given RelonChem at hospital pharmacy.

I totally understand your concerns, I won't be on tamoxifen as I am post menopausal but the hormone inhibitors I will be on sound horrible, I am dreading taking them but will be on them soon....we can only hope and pray the side effects won't be too severe...good luck with yours xx

Bassetmum - unfortunely i don’t know the original brand(preferred)  as i took the box to the pharmacy so they could reorder it for me. They came back saying they couldn’t get that brand. I’m currently on MA Holder TEVA UK LTD. the orginal brand was dispersed by the hospital so when I’m next in I will be asking for six months worth of the original brand. I think it’s trial and error, hoping that one will provide the least amount of side effects and sticking with it.

Thank you, I will just give them a go, at least I can judge whether I've made the correct decision whether or not to continue. I very much appreciate your input.

Hi Bassetmum

the decision at the end of the day is yours and glad you are going to try them. I’ve got a new prescription and now on Mylan. Last night was the best sleep I’ve had in months and did not wake up in the middle of the night in order to put jumpers on. The freezing cold feeling has gone and so far no hot flushes - feel back to my old self. It would seem it’s trial and error, if one brand doesn’t work for you then keep trying others till you find one that does.

personally I would try everything to reduce my chances of the cancer returning.

Oh a good night's sleep. You wont't know yourself. Happy for you and  long may it continue.

I've got other illness which gave me the gift of night sweats and chronic insomnia for the last 18 years, so I might deal with those parts. You are right though, reducing chances of recurrence is the key. 

Thank you so much 

Hi Bassetmum,

I've just started Month 3 of Tamoxifen. No side effects that I'm aware of so really pleased with it. I'm on Relon. I've just signed up to the internet pharmacy where you order using the NHS app and they notify you when the prescription reaches them and then post it out to you. I'm a little worried in case this gives me a different brand which may have side effects, but the advantage of not having to go to the pharmacy each month seems worth it. 

I've read other threads about tamoxifen, and Relon seems to be one that many people report minimal side effects on, but it is probably very personal. Good luck with it. I have to say that it is such a relief to find that this adjuvant therapy, that may well protect me from a recurrence of cancer, is giving me none of the potential side effects. I am taking precautions, like getting compression socks for the flight to my next holiday. Best of luck wiht it :) x

I had horrible night sweats with one brand of tamoxifen, so my heart goes out to you. Hope you can get all of these things addressed.