would you please share your experiences with tamoxifen side effects? I'm most scared of hair thinning. Is there an alternative to med ? I'm not looking forward to hair loss.. Is there Sg we can do to prevent this or?
I lasted 18 months on tamoxifen ... my hair was fine, but for me it was a nightmare ... I felt weaker and weaker and ached everywhere .. so I did my homework, and found it gives an extra 3% of prevention ... that's info I found .. so I thought for such a low percentage, it wasn't worth all that pain...
But I'd say, give it a try .. some are quite o.k on it .. you may be one ... and if you don't like it, you can always stop it .. everyone is different ... Chrissie.... good luck ...
I've been on Tamoxifen for almost 7 months and it's been OK. I started really well and adjusted. I have noticed my hair is thinning and it doesn't grow much (neither do my nails) but I've still got plenty and no bald patches, just thinner. 7 months in I am experiencing some joint pain but it's not that bad. For me the worst thing has been up in the night constantly going to the loo. My nurse told me that Tamoxifen doesn't usually cause that but it certainly has for me! I've also had hot flushing but that seems to have settled down too.
My PREDICT score shows that taking Tamoxifen only improves things for me by 1% which is very low. I've had a mastectomy and no radiotherapy or chemotherapy so I want to persevere on it as it's my 'safety net' against recurrence. Everyone's situation is different. If you have a bad experience on it then you can assess with your team to come off it or change. From what I've read, most people manage quite well on it. Good luck
Thank you Mary for taking the time to responding, much appreciated! I guess I will have to give it a go at least. I'm pre menopausal. Nurse asked me today how I'm feeling days before my period . I honestly answered her 'like a mad woman ' cause it's true . She said oh I feel sorry for your husband then. Cause that's what happens with low estrogen level. I was like so what could be done cause those days are the worst , I wouldn't want that to be consistent... she said antidepressants is the answer then. I'm floored again . Sorry for venting but does this ever end? Light at the end of the tunnel? No quick fix . It's like going deeper . Honestly probably for the best that one doesn't know what he/she got himself/herself into when getting the diagnosis. It's like step by step . So now Sg else I had to accept to be on antidepressants? Cause if it's like pms every day I can't do that, no way. Before the diagnosis I struggled with anxiety I can't have that enhanced. I'm already anxious about this ... I'm starting to think , medical science wants to save your life but not concerned about the quality of life or dignity. Just save the life , result ! Well there is a balance and I dont want to sacrifice my dignity or quality of life , just to be alive . Current mood.. sorry if too dark
I understand how you say you are feeling. You have been through this trauma of BC and it takes time to come to terms with what has happened. I had some telephone counselling sessions via Macmillan and they can be really helpful. It sounds as if your anxiety is taking hold. Try to reign yourself back in. Take each day at a time. Your body will take a bit to adjust to the Tamoxifen. Try not to stress about what could happen. If you read the side affects in the leaflets, they're horrific and I was especially worried about blood clots. I'm fine and I'm sure you will be too. These things are always 'worst case scenarios'. Many people manage very well on it and there's every chance you will too.
We can all have bad days but generally better days follow. If you feel low get outside and exercise, go to the gym, walk the dog whatever works for you. I do think it's important to try to stay positive. I know that's not always easy. There's no point worrying about things that may not happen. Remember when we waited for biopsy results and googled like crazy and lived every day in a trough of fear and anxiety before we had a diagnosis (that was me), and the best advice I had was to take it a day at a time. Yes, there is light at the end of the tunnel. I think we still need to do this and try not to worry too much about the 'what ifs'. Do consider contacting Macmillan about that counselling, I found it really helpful. Remember, you're strong, you got through BC, you've got this.
I've already had my free counselling sessions. That was after the diagnosis. I think it was helpful . However, felt a bit like counsellor was cutting the session short, also one time didn't even call me at arranged time. I ended up calling her cause I was unsure like is this happening today or not . are they volunteering? I'm not sure what the set up is, she mentioned a few times that she can offer me her services privately if I'm willing to pay. I felt like I'd consider to pay for private counselling but then I would go with someone else. Cause I didn't like this approach . Almost like a marketing strategy to drum up business. I didn't even bother with the last session . I understand counsellor doesn't have to genuinely care but at least should study her notes before making the call. I'm sorry sounding ungrateful but how it felt hence why I didn't even bother with the 6th session.
I know what you mean about the counselling. I had 6 sessions and whilst she was pretty on the ball about phoning and timing she wound be winding the session down after half an hour most times. She also offered for me to contact her independently but I didn't bother. It did help just to offload a bit so I did think it was quite good.
