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Question for Trey et al...CML not my worst disease!!!


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#1 jmoorhou

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Posted 15 July 2015 - 08:57 AM

CML is not the worst disease I've had.....I had polio at 18 months which left my lower left leg with less muscle than the other.

 

Trey, I now have Bursitis so bad in my left hip now I have a pronounced stiff follow through when walking.  I've babied it my entire life not walking too much or working out too much.

 

Now this, could it have been the Gleevec....


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 Trey

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Posted 15 July 2015 - 12:21 PM

TKI drugs can cause "temporary" joint pain that may go away over time, or will cease if/when the drug is stopped.  In that way it is unlike bursitis, and so is not actual bursitis.  More likely something like the uneven gait over a long time has damaged the left hip.  Even small differences in the length of a leg can cause such pain over time. 



#3 jmoorhou

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Posted 15 July 2015 - 10:11 PM

It's not pain Trey, it's weakness of the hip, have this terrible limp now.  Sometimes I get the feeling you are a doctor.  Do you think this will get better?  You're right it was the uneven gait. It's probably Iliopsoas Bursitis, does that get better?


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#4 Trey

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Posted 16 July 2015 - 04:22 PM

I don't know if it will get better.  It requires changing what is causing the issue, if possible.  Probably not the TKI drug.

 

I would suggest you go to a shoe insert fitting place and get some inserts for your shoes to even out your leg height. 






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