4 replies to this topic

[Sloater]

Well thought I would post a recent update on how I have been doing on Sprycel. 

Pros:  Numbers are perfect, the sign of bad cells is still zero,  according to my Onc, I am one of the lucky ones. 

Cons:  Severe leg pain in lower legs and arms.  If I rest for 3 days after playing golf, or working out, it goes away.

Wish the muscle pain would go away...       What is, is.......

[Gene]

Glad to hear you are doing well.  I was wondering if you have tried Gaterade or Smartwater.  From time to time, I drink Smartwater.  I'm on Tasigna and I've read it can mess with my electrolyte balance.  Although I drink plenty of water, I get muscle cramps.  If I have Smartwater (water and electrolytes) and my cramps seem to go away.   Perhaps you have already tried it.  Just thought I would share.

[sandimartini47]

Sloater,

Thank you for posting; I was wondering how you were doing on the sprycel.  That is great--keep it up.  sandi

[Samcerly]

I have been on Sprycel 6 months, what I find is I have 2 good weeks then 2 bad weeks.  During the bad weeks that is what I deal with; low back, hip, thigh, knee, shin and sometimes even the bottom of my feet pain.  I started acupuncture based on the recommendation from the integrated medicine dept at my hospital and so far it is helping.  It seems to be helping me have less bad days and less intensity on those days.  They also recommend self hypnosis to increase opiate production, since opiates help to decrease pain and unfortunately once you are in pain your opiate production is decreased.  Haven't learned how to do it though, thought i may sign up for a session at my next doctor appt.  I did search books on amazon and Dr. Weil has a book on medical self hypnosis.  Wish you the best!

[Stevo]

Thanks for posting, Sloater.  I'm a newbie (9 months DX and Sprycel), so its nice to hear from the veteran S users.

Hope you can find some relief from the pains.... let us know if you do.

best... Steve