Forum Discussion
Afinitor experiences?
Hi everyone,
Just wondering if there are others out there who are taking the new drug just released on the PBS, Afinitor? I have bone metastasis and had 4mths of chemo - Abraxane earlier this year.
I refused further chemo as I I found the comment 'you will have to have chemo for the rest of your life' (once a week in my case) from my oncologist pretty hard to take.
Was looking for alternatives - perhaps less invasive. I take it along with Aromasin. Both are knocking me around a bit - I've only been on them for one month.
I'm interested to know what others are experiencing.
I'm in a regional area and know no one in a similar position.
Thanks folks!
8 Replies
- Hi Elise, I am on both as well for the last two months, it has knocked me around, side affects I have is the coughing, rash on my arms and back, bleeding nose and tiredness. I had my scans done on Monday so will see if the Afinitor is working when I see my onco. Take care Desiree
- Hi Sun, yes fatigue & joint pain are with us often. I've had a few adverse reactions to meds over the years, necessitating a long break. And it's during these break periods that I've felt the most well. I have metastasis scattered thoughout my skeleton - but my pelvis & sacrum area causing the most pain as it affects sitting/walking/lying. Trying to keep active with walking (I've an energetic dog) yoga/massage/singing, (good for the immune system) acupuncture & some meditation. And I'm about to explore Infrared saunas as I've read they combat pain & inflammation. Send another post sometime...go well. Elise.
- I'm on these drugs as well. Have tiredness, a rash on my ace that comes and gets as well as pain in my joints. I have arthritis as well so I never know if it's the drugs or arthritis. Sometimes I do get shortness of breath if I climb stairs. I haven't done bloods or scans so I don't know if drugs are working. Sue
- I'm on these drugs as well. Have tiredness, a rash on my ace that comes and gets as well as pain in my joints. I have arthritis as well so I never know if it's the drugs or arthritis. Sometimes I do get shortness of breath if I climb stairs. I haven't done bloods or scans so I don't know if drugs are working. Sue
- Thanks for your reply Maxine. Yes I also have trouble sleeping sometimes & find myself awake at 3.am with a cup of tea & panadol. I was told I must take Aromasin with the Affinitor as the research/trials were done on this drug combination. Are you on both too? I had Aromasin last year but ceased after a few months as I couldn't tolerate the side effects. And I'm experiencing a lot of joint pain in my hips/legs which makes life difficult. Some good news though, is that my tumour marker has fallen after only being on these new drugs for one month. I will trial them for another two months at least & report back to my Oncologist. Thanks again, stay well Maxine!
- Thanks for your reply Maxine. Yes I also have trouble sleeping sometimes & find myself awake at 3.am with a cup of tea & panadol. I was told I must take Aromasin with the Affinitor as the research/trials were done on this drug combination. Are you on both too? I had Aromasin last year but ceased after a few months as I couldn't tolerate the side effects. And I'm experiencing a lot of joint pain in my hips/legs which makes life difficult. Some good news though, is that my tumour marker has fallen after only being on these new drugs for one month. I will trial them for another two months at least & report back to my Oncologist. Thanks again, stay well Maxine!
- Hi I've been on the same drugs for about 6 weeks and finding that I'm as tired as I was when having chemo, not sleeping to good either and had a few mouth ulcers but they have gone but I have now got pimples on my face I'm 59 and don't need these. I hope you are coping with it all. Maxine
- Hi I've been on the same drugs for about 6 weeks and finding that I'm as tired as I was when having chemo, not sleeping to good either and had a few mouth ulcers but they have gone but I have now got pimples on my face I'm 59 and don't need these. I hope you are coping with it all. Maxine
