7 replies to this topic

[tiredblood]

The doctor does not feel the muscle spams are caused by Gleevec. Go see your primary care. First thing primary care will say is what did the hem/Onc say.
There needs to be CML telehealth so we can all be treated by the experts.

[scuba]

The doctor does not feel the muscle spams are caused by Gleevec. Go see your primary care. First thing primary care will say is what did the hem/Onc say.
There needs to be CML telehealth so we can all be treated by the experts.

 

While I was taking Gleevec and even when I witched to Sprycel, I developed muscle spasms (mostly at night) during and after both drugs. My oncologist told me to take extra magnesium as TKI's cause a depletion in mg in the body. I did - and the spams stopped completely (cramping) and on top of it I sleep much better.

 

https://www.healthli...esium-and-sleep

 

I have learned much more about magnesium importance in our diet since then and that we don't get enough to begin with anyway.

 

Try taking Magnesium Taurate (better absorption). Results should be almost immediate - my cramps disappeared that night.

And it's good for your heart (actually it's quite important for heart health):

 

http://www.todaysger...050613p30.shtml

 

I take magnesium every day morning and evening before sleep. I take it with me on trips.

 

(also - if you didn't have muscle spasms/cramping before taking Gleevec and then you developed spasms after starting Gleevec, then it's most likely the Gleevec. Your oncologist is not helping you in this regard)

[Trey]

The muscle cramps were the #1 no kidding frickin' reason I ditched Gleevec after 11 years PCRU on it.  On Sprycel the cramps went away after a week and never returned.  Your Hem/Onc is un-frickin'-formed.

 

On this issue, I AM THE FRICKIN' EXPERT.  Sorry I shouted.  I am calm....I am calm....I am calm....

[tiredblood]

I've started having them now inside my torso, and on the 12th, deep down inside, which has startled me a bit, and feels like they're happening too when I swallow (not in the esophagus, but outside of it). Muscles I've never felt in my life. Random places and times, and daily. Doc sent word he doesn't think it's the Gleevec because I've been on it for a while. I know from taking Tasigna that these side effects have no rhyme or reason, and IMO, may have cumulative effect. I do, however, think he is right about me having an inflammatory problem going on. I'm sick of the whole TKI thing.
Thank you Scubes and Trey. IMO, my fellow CMLers are the true experts. Shout, Trey, shout. I'll SHOUT with you! Gotta figure out what to do.

[scuba]

Trey - buddy - you need some anger management.....

They have a drug for that!

 

Prozac .... you can take prozac!

 

Oh wait ...

 

https://www.drugwatc...zac/litigation/

 

... "...led a man to murder co-workers and then commit suicide".

 

Never mind.

 

... Take magnesium instead, calms the nerves.

 

https://www.psycholo...inal-chill-pill

[SR Bruiser]

Scuba

 

it's almost 3 AM go to sleep, they have drugs at HEB that will put you to sleep, OR ARE YOU STILL celebrating the ASTROS win???

[tiredblood]

I had a primary care patient the other day. He has CML.  We were talking about how sometimes the doctors seem to be in denial about SEs from TKIs. I thought he made an excellent point when he said, "When you fold out the package insert and it is this big [holding his arms out], there are bound to be side effects." "Larger than a road map!"  Anyway, I thought he made a good point and we found some humor in the midst of our SEs.

[hannibellemo]

I have another take on this. It's obviously the Gleevec, however, if he is saying that  Gleevec isn't causing the cramping and spasms is he/she trying to help you determine what it is? As a watcher of every medical show known to man   I can think of several serious diseases that have muscle twitches and spasms and cramping as early signs. 

 

Next time you see your onc ask what he thinks is causing it if it isn't a side effect because it definitely isn't something you've ever had before Gleevec.

 

"Eliminate all other factors and the one that remains must be the truth" Sherlock Holmes, The Sign of the Four

 

Happy New Year!