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Painful toes while on sprycel

Hi everyone.   My name is Sherley.  I was diagnosed with cml oct 2018.   I’ve been on two generations of tki’s.    I first started gleevec and now I’m on 100 mg of sprycel for 6/12 months.  I still haven’t got full ccyr.    For the last week I’ve been experiencing pain in my toes and mostly at night.  Feels like someone smashed my toes and at the same time ants biting.  Anyone ever experience this before.  I’m 42 yrs old.   Really haven’t had any side affects except for your typical bone and muscle pain in the legs.  I get my new results for my bcr test Tuesday and I’m hoping to be in remission soon. I get really worried about continuing medication Bc if all the side effects that can occur later.  Any thought from anyone.  Thank you 

Sherley - Very sorry to hear about this painful side effect.  I experienced pain in my tailbone very early into treatment.  Usually pain is in the early weeks.  I like to think that pain may actually be the medication working really well.  I hope the pain subsides.  Depending on how far you are from CCyR it is possible that mutation testing is in order (1.3 for example vs 13.4).  I have not reached MMR (27 months in) and believe that younger patients at times don't respond as fast (I'm 39) but if you are very far from CCyR then it is something to look into.  

Hi Sherley,

This may be due to an acquired condition caller Peripheral Neuropathy. Here is a link to some podcasts- 1st explains what PN is with the others outlining how you might tackle this painful condition with Light Therapy.

https://podcasts.apple.com/us/podcast/healing-at-the-speed-of-light/id14...

Hope this is some help.

Sandy

Hi Sandy,

 

thank you you so much for getting back to me.  Someone else told me it may be that too but didn’t give me any suggestions.   I’m going to look up that now and do some research.   

 

Thanks again,

sherley

Hi 

im sorry to her about you as well  I  close to my ccyr.  I have an appt Tuesday to get my next reading on my bcr year.  I’m 15 months into treAtment now.  Started in gleevec which was doing great but then slowed down. I’m on sprycel now since July 2019.   I try to do thc oil too which I think was helping. But I don’t always make it. This symptom came in suddenly. I’ve never had any side effects.  It’s like a burning itching feeling.   How far are you from your ccyr?  Last test I was .45%.  I wish you the best.  

 

Sherley