Palbociclib trial ladies(how you doing)
Just wondering how you other ladies on this drug are faring. I'm on the maximum dose and seem to be doing quite well. I'm on cycle4 and have had were side effects. Hopefully you are all going well.
Forum Discussion
Hi Ladies
I am so appreciative of being able to read about your experiences. I don't have a cancer support network in my situation and was one of the first women in the country I live, to start taking Palbo.
I hope you don't mind me sharing my experiences with you. I hope it gives you all some additional things to consider and most of all hope. I am in to my 20th cycle of Palbociclib and Letrozole, used as first line of drug treatment in my case. I had heaps of tumors and am now down to one small one in my sternum, which we have just zapped the blazers out of. Fingers crossed for my next major scans etc. I have had minimal surgery and no chemotherapy as yet. I've continued to work full time and care for my family in a foreign country. We are very, very lucky to have this drug available to us. My hope is that you all get great results from it.
Here is just a little of my experience with the side effects:
Aches and pains - oh yes!
During the winter I sleep cocooned in a very snuggly, velvet like blanket. Seems to just take the edge off the pain and puts me to sleep much quicker. Not sure what to replace it with now our weather is warming up over here.
I have a body pillow and often at night cuddle that with my arms and legs, it really eases the bone pains and general aches - particularly the pain in the sternum when I want to sleep on my side.
2 months ago my oncologist asked if I had been taking the pain meds she had prescribed - I only had when it had been bad. She suggested trial the regularly twice a day. What a difference. I actually didn't realize how much pain I had been living with until it was gone. In the scheme of what I am putting in my body drug wise, I have decided that two pain meds a day are well worth wrapping my head around.
Flushes, energy and general feelings of well-being.
I had reduced my sugar intake prior to getting my diagnosis, just being healthier, more educated and results of living in a different country.
Since diagnosis I have gone sugar free, gluten free, low carbs and alcohol free. When I choose to eat sugar or carbs I feel very unwell. And much more tired. Green tea, also helps enormously and remembering to drink LOTS of water. I'm not vegetarian, but am reducing my meat intake - done some research and curious if it will help me manage better.
Mouth ulcers - hate those suckers!
My oncologist gave me this great mouth wash and it helps enormously, they normally lasts about 4 days and it is super hard to eat or drink. Very uncomfortable to talk too. This has eased as the months have gone on, and now reappear occasionally. I can almost predict which days of the monthly cycle they are going to appear (if they decide to).
Energy and feeling like crap
I work full time and have a busy family life.
Most days I have to really push through to get to work. But once there and I get busy and involved, the pains and feeling bad seem to diminish. Keeping busy and really highly occupied have helped me a great deal. If I relax when I get home I find if I just sit and relax my body and mind, rather than having a lay down (so tempting) I actually have a much better day. Having a big rest on the weekend is good, but it does make me feel low and I can't get past the feelings of tiredness even after the rest. It is interesting how bad I feel after doing serious resting.
Dizziness and feeling faint - nothing really works. I just walk close to walls most of the time. And my teens have become used to me being more cosy with them when we are out and about :)
During the 20 months I have had to postpone the double dose, by one week, 3 times due to low neutrophils. Often my immune system is directly related to my lifestyle choices - particularly food. My oncologist is really good at negotiating this with me. I suspect if I was on the trial I would have been made to postpone more times than 3.
I'd love to hear about any other things that are working for you all. I can see that many of you are exercising a lot. Are you finding it makes a difference to your bodies and the side effects or mainly for the health of your mind?
Wishing you all the very best of things that are good in life.
I am so appreciative of being able to read about your experiences. I don't have a cancer support network in my situation and was one of the first women in the country I live, to start taking Palbo.
I hope you don't mind me sharing my experiences with you. I hope it gives you all some additional things to consider and most of all hope. I am in to my 20th cycle of Palbociclib and Letrozole, used as first line of drug treatment in my case. I had heaps of tumors and am now down to one small one in my sternum, which we have just zapped the blazers out of. Fingers crossed for my next major scans etc. I have had minimal surgery and no chemotherapy as yet. I've continued to work full time and care for my family in a foreign country. We are very, very lucky to have this drug available to us. My hope is that you all get great results from it.
Here is just a little of my experience with the side effects:
Aches and pains - oh yes!
During the winter I sleep cocooned in a very snuggly, velvet like blanket. Seems to just take the edge off the pain and puts me to sleep much quicker. Not sure what to replace it with now our weather is warming up over here.
I have a body pillow and often at night cuddle that with my arms and legs, it really eases the bone pains and general aches - particularly the pain in the sternum when I want to sleep on my side.
2 months ago my oncologist asked if I had been taking the pain meds she had prescribed - I only had when it had been bad. She suggested trial the regularly twice a day. What a difference. I actually didn't realize how much pain I had been living with until it was gone. In the scheme of what I am putting in my body drug wise, I have decided that two pain meds a day are well worth wrapping my head around.
Flushes, energy and general feelings of well-being.
I had reduced my sugar intake prior to getting my diagnosis, just being healthier, more educated and results of living in a different country.
Since diagnosis I have gone sugar free, gluten free, low carbs and alcohol free. When I choose to eat sugar or carbs I feel very unwell. And much more tired. Green tea, also helps enormously and remembering to drink LOTS of water. I'm not vegetarian, but am reducing my meat intake - done some research and curious if it will help me manage better.
Mouth ulcers - hate those suckers!
My oncologist gave me this great mouth wash and it helps enormously, they normally lasts about 4 days and it is super hard to eat or drink. Very uncomfortable to talk too. This has eased as the months have gone on, and now reappear occasionally. I can almost predict which days of the monthly cycle they are going to appear (if they decide to).
Energy and feeling like crap
I work full time and have a busy family life.
Most days I have to really push through to get to work. But once there and I get busy and involved, the pains and feeling bad seem to diminish. Keeping busy and really highly occupied have helped me a great deal. If I relax when I get home I find if I just sit and relax my body and mind, rather than having a lay down (so tempting) I actually have a much better day. Having a big rest on the weekend is good, but it does make me feel low and I can't get past the feelings of tiredness even after the rest. It is interesting how bad I feel after doing serious resting.
Dizziness and feeling faint - nothing really works. I just walk close to walls most of the time. And my teens have become used to me being more cosy with them when we are out and about :)
During the 20 months I have had to postpone the double dose, by one week, 3 times due to low neutrophils. Often my immune system is directly related to my lifestyle choices - particularly food. My oncologist is really good at negotiating this with me. I suspect if I was on the trial I would have been made to postpone more times than 3.
I'd love to hear about any other things that are working for you all. I can see that many of you are exercising a lot. Are you finding it makes a difference to your bodies and the side effects or mainly for the health of your mind?
Wishing you all the very best of things that are good in life.