hormone therapy
I have invasive lobular cancer.Ive been told to go on letrozole. Anyone on it and any side effects?
Forum Discussion
I agree with everything that has been mentioned so far. I was diagnosed with ILC exactly 1 year ago. I had a clear mammogram and US in February 2019 and then noticed something and had it checked and so it began. 4 x AC, 12 taxol, BMX (my choice) expanders and then implants put in 4 weeks ago. My nodes were clear and I had clear margins. I have been on Femara for 5 months. I have slowly developed stiff fingers and feet - mostly in the morning, but once I get moving it vastly improves. I am 54. I had a hysterectomy before my diagnosis, but I kept my ovaries. I just went straight onto Femara, but my doctor said that even though AIs are the ideal treatment for ILC, if I couldn’t tolerate them, I could take tamoxifen.
I agree with @Abbydog and I approach each treatment with an open and mostly positive mindset and keep everything crossed that I won’t experience the side effects. My oncologist is excellent and wants me to let him know of any side effects I may have as he said there other options to explore - change brand; have a ‘holiday’ from the AI etc. He explained that different people react differently to different brands so sometimes it is worth trying another brand. He also said that sometimes having a short break and then restarting kind of reprograms the person and their side effects may lessen - he said they don’t know why this happens, but it can happen and is worth trying. The other thing is, and this is where it becomes very individual, it all depends on your individual pathology and the overall benefit that is gained from completing each of the different treatment options - chemo, rads, AI/Tamoxifen.
I am determined to continue with the AI as it is incredibly effective in the treatment of ILC. I am also taking various supplements to help with the aches - I am not really sure if they are doing anything, so after the crazy festive season I am going to do research on myself 😂 and just take away one thing at a time to see if I notice any difference. As I said, my oncologist is always supportive - even if he does raise his eyebrows at times - and he suggested I just change one thing at a time as, in his words, ‘you could be spending a lot of money on something that isn’t doing anything’.
@arpie and @Zoffiel do you take any supplements for side effects? You always have great suggestions and at the moment I reckon I will start rattling if add anything more to my potions but if it works, I am up for it! I have read that drinking lots of water is helpful and acupuncture can also help.
Just from our responses, you can see how varied our experiences are. Yes, I am stiff and at achy at times, but I just keep my eye on the bigger picture. I guess, the only way you will know is when you try whichever medication you decide on and if you find it too tricky, you can try something else or decide to stop, as ultimately it is your decision. Your doctor may be suggesting tamoxifen as there are potentially less side effects. Don’t forget, you may have minimal or zero side effects. Good luck with your decision
I agree with @Abbydog and I approach each treatment with an open and mostly positive mindset and keep everything crossed that I won’t experience the side effects. My oncologist is excellent and wants me to let him know of any side effects I may have as he said there other options to explore - change brand; have a ‘holiday’ from the AI etc. He explained that different people react differently to different brands so sometimes it is worth trying another brand. He also said that sometimes having a short break and then restarting kind of reprograms the person and their side effects may lessen - he said they don’t know why this happens, but it can happen and is worth trying. The other thing is, and this is where it becomes very individual, it all depends on your individual pathology and the overall benefit that is gained from completing each of the different treatment options - chemo, rads, AI/Tamoxifen.
I am determined to continue with the AI as it is incredibly effective in the treatment of ILC. I am also taking various supplements to help with the aches - I am not really sure if they are doing anything, so after the crazy festive season I am going to do research on myself 😂 and just take away one thing at a time to see if I notice any difference. As I said, my oncologist is always supportive - even if he does raise his eyebrows at times - and he suggested I just change one thing at a time as, in his words, ‘you could be spending a lot of money on something that isn’t doing anything’.
@arpie and @Zoffiel do you take any supplements for side effects? You always have great suggestions and at the moment I reckon I will start rattling if add anything more to my potions but if it works, I am up for it! I have read that drinking lots of water is helpful and acupuncture can also help.
Just from our responses, you can see how varied our experiences are. Yes, I am stiff and at achy at times, but I just keep my eye on the bigger picture. I guess, the only way you will know is when you try whichever medication you decide on and if you find it too tricky, you can try something else or decide to stop, as ultimately it is your decision. Your doctor may be suggesting tamoxifen as there are potentially less side effects. Don’t forget, you may have minimal or zero side effects. Good luck with your decision