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Ponatinib

Hello out there fellow CML’s 

I have had some fantastic news my CML is undetectable. A new lease of life. 

I was just wondering if there is anyone who is suffering side effects or knows of side effects affecting the legs and feet.

Im suffering with weak  and painful legs when I walk, going up stairs is particularly bad,  my feet go numb with pins and needles, I now have a permanent numbness sensation on part of my foot and some toes,  this has been going on for some time, it’s seriously affecting my mobility, and has taken the joy out of walking. I cannot walk very far at all, I have to keep stopping to allow the pain to settle before I carry on with my next steps. Even at home I’m having this problem.the discomfort starts from my hips down my whole legs, my lumber scan is fine. I can’t get to live this new lease of life as I’d very much like to, because of this problem. My consultant did a muscle enzyme blood test some time ago but there seems to be no problem there.

it may be a coming from a spinal disc problem as I do have problems with my cervical spine, I just don’t know..yet if there is a connection regarding nerves, my GP has referred me to the muscular skeletal unit.

I’d just like to get to the bottom of this so that I can find out what can be done and to rule out side effects from my Ponatinib 

 

thanks in advance if anyone can give me some advice or know this to be a known side affect.

Norma 

 

Hi  Norma, 

welcome to the world of ‘post cml’. I have been on mmr for nearly two years, and my haematologist has just withdrawn treatment. So I’m on a sleigh ride to nowhere. The symptoms you are having are consistent with spinal stenosis / “slipped disc”, and I know, as I have several discs which are being rather naughty, and causing me similar symptoms to yours. Best of everything, and I will remember you in my prayers.

God bless

Richard.

Hi Norma

I found your post interesting. I, too, am on Ponatinib and have a numb foot. However, I am (or was?) certain that mine is due to shingles as I noticed in at the same time as I had shingles. The numbness and pins and needles hasn't improved though after almost 10 months. I am on gabapentin for the nerve pain.

Susan