7 replies to this topic

[lulusflyin]

Hi-

Has anyone had any luck with techniques for decreasing muscle discomfort (chronic tightness/pain) with Sprycel? The drug is working great for me (been on 100 mg for a little over a year) and the discomfort is not significant enough that I would want to switch. I am curious if anyone has had luck with massage, acupuncture, etc or a particular supplement? I tried magnesium for a bit but it didn't work.  My muscles get extremely tight and I can only seem to get a few hours of relief from massage or stretching. 

 

Also, my doctor said if I get low enough BCR levels at my most recent blood draw she would be willing to discuss dropping me to 80 mg.  I'm a little freaked out - I have side effects but they are livable and I don't want to do anything to risk my good response so far (I'm 41, have 2 little kids, am the breadwinner of the family - can't take the chance of getting worse). She said we could check my response again in 6 weeks just to be on the conservative side if I am concerned.  Any thoughts?

 

Thanks!

[gerry]

I took celery seed supplements for the muscle cramps from Gleevec. Magnesium didn't work for me.

[chriskuo]

What is your level of response?

[lulusflyin]

My response after a year is 0.02%.  It was also at that level at 9 months.

[kat73]

That is a terrific response in only a year!  If I were you, especially since the doctor suggested it, I would definitely try dropping the dose to 80 mg.  Give yourself at least 2 PCR's to see how you do.  (As I'm sure you well know, things bounce around a bit without "meaning" anything).  I noticed a big change in side effects dropping Sprycel from 100 to 70 and, later, to 50 - all the while my PCR number continued to slowly drop.  There are plenty of people on this forum doing super well on even 20 mg Sprycel. 

[MarCap73]

Hi-

Has anyone had any luck with techniques for decreasing muscle discomfort (chronic tightness/pain) with Sprycel? The drug is working great for me (been on 100 mg for a little over a year) and the discomfort is not significant enough that I would want to switch. I am curious if anyone has had luck with massage, acupuncture, etc or a particular supplement? 

 

Lulusflyin,

 

We are relatively close in age, I am 43, and I also have two young kids (and a very active puppy).  I used to be very active and easily able to keep up with my kids, run a 5K on a whim without breaking a sweat, etc.  I was Dx in Nov '15 and have been on Sprycel since then and have had some issues with it: chronic fatigue and chronic muscle pain.  

 

On the advice of a friend I recently started acupuncture and Traditional Chinese Medicine (TCM).  I was very reluctant and am still somewhat of a skeptic about it all, especially the other aspect of TCM (which is Chinese herbs) but I was willing to give it a 12 week shot to see if it can help.  I am about 4 weeks in now and I have mixed thoughts.  The acupuncture does seem to help somewhat. When the needles do go in, you really can feel it working.  But it's not a long term "fix" because a day later the muscle aches are back.  I am not sold on herbs.  

 

Before you do anything like that (especially the herbs) talk to your Onc.  Have the onc or the specialty pharmacy do a search on the Natural Medicines Research Collaboration database for interactions with Sprycel.  There are some.

[gerry]

You do need to check supplements with your doc or pharmacist. My pharmacist told me the celery seed was okay. His concern was for anything that interacted with the liver in regard to Gleevec. I also took all my supplements at the other end of the day from the Gleevec just to be sure.

[M.A.]

My calf muscles/tendons felt like metal rods when I was on 100mg Sprycel, whenever I walked uphill, and my thighs felt like they had sandbags in them! When I woke in the night I felt like my muscles were clenched. 

 

On 50mg the muscle/tendon issues are minimal. I do feel more relaxed all round when I take magnesium supplements but it plays havoc with my digestion so I only take it intermittently.

 

Good luck lulusflyin and hang in there!