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Sore feet, numbing of toes, toes turning white and aching calves

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Hi there I was diagnosed with CML  October 2014. I started on IMATINIB , was then moved on to NILOTINIB May 2015. From December last year I have been having stabbing pains in the arches of my feet plus my toes feel numb along with the balls of my feet and aching calves. All this comes on when I have walked no more than about 250 meters, I carry on walking but it is very painful. Also it is not sore to the touch. As my CBR-ABL levels have not gone down to accepted levels I am now on DASATINIB, unfortunately the situation with my feet etc continue. I have seen a vascular consultant  to determine if I had claudication but have been told I have good blood flow all the way down to my toes left and right. Any info would be grateful

 

Billy

Hi Billy,

That doesn't sound nice at all. I'm on dasatinib, and have found since I started I have somewhat ankles and calves. It feels like strong stiffness and I cramp up easily. I've found that lots of gentle stretching can help, though frankly it's just something I've learned to live with since it's not that bad. I invested in an electric leg massager which I use all the time and it really helps.

You say this comes on after about 250m of walking. If you are sedentary for the day, do your legs and feet feel fine? Also, when these pains started which medication were you taking? 

David.

Hi David,

Thanks for replying. When I am resting my feet at times feel numb and cold. I have done stretching, my daughter is a sports injury therapist and I have been to a private osteopath and massage doesn't appear to alleviate the problem. At this moment in time I am waiting to see what my consultant says when he gets the report from the vascular consultant stating that I have good blood flow all the way to my toes.

Thanks for the suggestions and fight the good fight

 

Regards

 

Billy

 

 

 

David forgot to mention these symptoms started when I was on NILOTINIB

 

Billy

Hi Billy,

It seems from what you say that you are suffering from a side effect common to most TKIs... muscle cramps, stiffness etc. I, and I think a few others, have used supplements to good effect. Magnesium is the main one that seems to have an effect muscles and low levels can be the cause excruciating cramping pains in some people. Magnesium oil (available in health shops) can raise levels over time, maybe your could try massaging your feet with this. You might also try supplementing with glucosamine which is good for dealing with joint pain. 

Hot baths with the addition of Epsom Salts can also help... 

Sandy