Hello Ladies I have not been on here a lot since lockdown as I have been busy making scrubs for the NHS, together with sewing folk up and down the country .
I am having a little break now . Question if you can answer and would appreciate it. I have been on Tamoxifen for about a year, I struggled with it at first and sooner had I got rid of one symptom I have another which I am sure is the Tamoxifen so really struggling again. I am due for a telephone meeting with my oncologist in June. I did email another oncologist who was very kind to reply. In a nutshell he said it would be quite reasonable to switch from Tamoxifen to Letrozole. Have any of you done this ? Anyone on letrozole how do you fair with side effects ? I know everyone is different.
To those of you who are struggling either waiting for treatment, having treatment , worried about results and other complications around OC and thats without the worry about COVID 19 . my best wishes to you all Lesley xx
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Spirit22
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Hi Lesley, I’ve not been on Tamoxifen but have been on letrozole for a year which has some side effects for me but these are different for different people.
I have sore muscles and ligaments but when I move they go. They are in my feet and right leg this week. They’ve moved around and been everywhere but as I said, don’t last especially if you stretch gently before getting up. Bending over to stroke the cat one morning caused bad sciatica for a few months but tai chi or yoga helps.
Fatigue and constipation can be a problem but taking plenty of fibre helps.
Bone density Is the other issue as it’s a hormone blocker. So vit D and calcium are important as is weight bearing exercise.
I think we all react differently to different drugs, & some work better on sme ladies than others. I tried Tamoxifen, but only took it for 3 months, as it had no effect on my cancer at all, it kept growing. I have been taking Letrozole for over 2 years now, with a bit of fatigue & some joint pain, but on the whole feeling well. At my last scan, it was still working well, though ,due to covid 19, I haven't had a scan since around Christmas time, which is really bugging me as I should have scans every 3 months. I have now taken all the hormone blockers over the last few years, & Letrozole is the one that has worked best for me. Di
Thanks Di for your reply. So glad that letrozole suits you and working well for you. I am going to ask my oncologist in June which I presume will be a telephone call and see if he agrees with me about changing.
Its so frustrating with this virus isn't it. Waiting for scans, appts treatments etc.
I am also waiting for referral and possibly another scan as I have a mid line hernia and its getting bigger and so uncomfortable , so in the meantime taking Beytaine Hydrochloride with pepsin which helps with indigestion as have stopped Omprezole as think its not good to stay on it long term.
Lets hope we all get back to normal soon, or the new normal . Take Care , Stay safe x
Dear Leslie , hope you’re enjoying a well earned break... and can focus on the distant scenery instead of a few inches in front of your eyes. My machines are now in the shed in Auckland so can’t offer help !
Letrozole .. I’ve been on it a good year and choose to put up with the side effects but in my case it’s aches in joints and muscles . You will have read all the common s e s . You will need vitamin D and calcium as it affects bones and ive recently had Zolodronic acid I v to strengthen homes; nothing to write home about the i v ; you just have flu like symptoms for a short while ... for the aches and joint pains I take. Brufen 800 and many supplements do feel generally well....
Thank you for reply . Glad you feel generally well Denise . Its interesting to know how other ladies are getting on with Letrozole. I know everyone is different and I think I have quite a strong constitution but finding the toxicity of Tamoxifen unbearable at times. So hope I can try Letrozole and see how I get on.
I have been on Letrozole since January2019 and for the first 6/8 weeks I had quite a few side effects, hot flushes, night sweats and headaches. Still get hot flushes and hands and feet are a bit stiff in the morning. As I have stayed stable since being on them I don't mind putting up with the side effects.
I was on tamoxifen for nearly three years . Terrible side effects . I then changed to Letrozole and the aches and pains are much easier. The accord brand is best for me . I was given a different brand and was very ill . I think you need to find which brand is best for you and stay with it .
! I agree about brands I was really poorly on one of them . I understand it was the fillers they add . Did change to another brand which was better although still not good . Few weeks into lockdown they couldn’t get hold of the brand that suited me better , and still not available at the pharmacy , they have tried all wholesalers 😌
But think I would be better to try letrozole see what oncologist says in June , if I can wait that long 😕
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