7 replies to this topic

[tinman1939]

Fellow CMLers -

 

Diagnosed in late 2006 and already a veteran of several TKIs, I know the drill whenever a new TKI is started. For the first week or so, I will generally feel achy.  That achiness usually subsides after a period of time, only to be replaced by some other side effect.

 

Having been on Ponatinib (Iclusig) for five months now - three months at 15mg/day and two months at 30mg/day, one would think the achiness would not be an issue.  But, it is.  For the last several weeks, I have had overall soreness. Now 60 years old, I hate to think it's because I am "older." 

 

Has anyone felt this achiness that long into a new TKI?  If so, what do you do for it? Do you take the occasional Aleve or Advil, or something else? Do you let your oncologist know?  If so, what does he or she prescribe?

 

Thanks for listening.  Looking forward to your responses.

 

Wayne

[Trey]

Tinman,

Did you lose your oil can?

 

Are the aches in the muscles, bones, joints, or just everywhere?

[Marnie]

Dang!.  .  .  why didn't I think of that response.  It was just waiting to be said. . .

[tinman1939]

LOL!  Nice response, Trey.  A little levity is always fine when dealing with CML. To your question, the aches are all over - the legs feel heavy (not from too much oil)....the shoulders are sore.....hurts to bend....after golfing (my form of "exercise"), I feel exhausted and achy - never was a problem before. Thanks in advance for any insights.

 

Wayne (aka TinMan)

[Trey]

The Ponatinib (Iclusig) may hit you harder than the others.  That could be a longer term issue for you.  These drugs have individualized side effects, and this may be your issue.  I would suggest getting more electrolytes to help a little.  When playing golf (I always walk) I drink a concoction of soda laced with salt plus potassium and magnesium pills (they dissolve).  It helps, especially during the summer.

 

Learn to play better golf, and you will not be so tired.  Then you can take fewer swings, walk in a straighter line, and rest longer between strokes while others hack around in the woods and the deep rough. 

[tinman1939]

Thanks, Trey, will try to get more electrolytes into my system.  I usually bring a Gatorade to the golf course, and this keeps me somewhat hydrated (I live in the Dallas area, where summer temps frequently hit 100).

Re:  playing better golf.  On my last scorecard (which I turn in each time for the USGA handicap index purposes), I wrote "Am in major slump.  Need help!!!" The club pro hasn't called me yet, but I do realize that fewer strokes will lead to less energy being expended (and a happier disposition).

[hannibellemo]

Fairway golf is overrated!

[tiredblood]

I felt horrible the first few weeks with the joint aches, etc. on the only TKI I've ever taken.  My thoughts were that if that was what I was going to feel like on the medicine that was to keep me alive, I'd rather just pass on.  Thankfully, it resolved after two to three weeks.  I feel like my doc is in denial that TKIs have side effects, but he isn't the one having to take them either.  The clinical trial folks seemed to experience side effects or else the FDA wouldn't have listed them.

 

Hope you get to feeling better.