11 replies to this topic

[taher]

Hello All,

I am currently on 800mg gleevec since 2004. Every time I try getting back in shape I start getting tendinitis in major joint like tennis and golfers elbow, shoulder inflammation of the rotator cuff etc... Does anyone have similar side effects.  Thanks

[Trey]

Yes, the TKI drugs unintentionally inhibit other kinases beside BCR-ABL.  One of those is platelet-derived growth factor (PDGF).  This impacts much more than platelets, including the repair of tendons and ligaments.  PDGF signals repair activities, it does not do the actual repair itself.  So with the TKI drugs inhibiting PDGF, tendons and ligaments may not heal as quickly, and minor strains may be more noticeable than in the past.  I had that problem during the first couple years after starting Gleevec, but lately this has not been as much of a problem for me.  The body seems to find alternate mechanisms over time to get the job done.

[MACELPatient]

Explains some of the issues I've had trying to run and hike.  Excruiating pain in the knees.  Given that my CEL is a FIP1L1-PDGFRA fusion.  I've just relegated myself to less strenuous activities for now.  No way Gleevec is going to keep me down.

[jjg]

Hi taher,

I do have had tendinitis issues but they have been no worse since dx - that's not great as I am doing way less exercise. Tendinitis is generally caused by a muscle imbalance / deficit putting excessive stress on a tendon. Sure the TKI might effect tendon healing but it doesn't invalidate all the normal physical therapy approaches. Of course as usual we are assuming that it is a side effect rather than an unrelated problem.

My sister has a connective tissue disorder and she can be damaged by something as benign as a non-expert doctor examining her knee. Even here the basic approach of strengthening all the muscles to reduce stress on tendons and ligaments still works, but it works very slowly. Don't give up. You might have to work harder than everybody else but heck we have cancer.

[jjg]

Forgot to ask - why are you on 800mg. If you are doing well can you consider dose reduction?

I'm on 600 but I'm only at 4.5 months and I definitely hope for a dose reduction in the future. If I was on 800 I wouldn't be worried about tendinitis I'd be curled up in a ball feeling sorry for myself.

[jrsboo]

Well paint me pink and call me Barbara!

Here I have been going to the physical therapist and sports doc for tennis elbow and rotator cuff injuries and was getting really frustrated that they can't seem to get any better.

Will print this out and take along to next meeting tomorrow!

Sigh.

Caroline

[taher]

dear jjg,

thanks for your concern, kind words and support You seem new here and don't know much about gleevec. Had to double the dose cause my pcr results were getting worse when i first got dxd. i am big man 6.6  tall ( maybe explaining the high dose i required) and relatively muscular or trying to be ( tendinitis issue). I am handling gleevec quite well and in remission stage, thankfully. We decided to stay on the dose not to get resistance to the drug which is very common.

As for your suggestion of me curling up and worrying about my dose... i  was given a second chance at life and wouldn't mind getting in shape and live an even healthier life

Best wishes to you and all

[taher]

thanks for your post very informative...

best

[jjg]

The dose thing wrt size was discussed with me too but from the  smaller weight perspective. It makes sense but there is not much data on  it. I remember reading some Japanese research that showed that Japanese  (on average smaller) suffered more side effects on a given dose  compared to Westerners.

Summary here:

http://www.cmlinfo.org/bodyweight.html

800mg  is the max dose. I asked my hem if I could go from 600 to 800 to try  and get a quicker reduction (we don't have access to the 2nd generation  drugs as frontline) but she said that many people on 800 have to take  drug breaks and it is more efficient to maximise the dose you can handle  without breaks. It was a crazy thing to ask because I have enough side  effects on 600. There was a paper that looked at the dose average for  people on 800 and over some months they actually averaged close to 600.  None of this takes weight (prob should be lean muscle mass) into  account. At 6 6" you are clearly not average - airline travel must be  horrible.

I've seen some discussion here about reducing dose once  PCRU and it seems like a suck it and see thing. Does anybody know if  there is any research on reducing dose after PCRU?

[GerryL]

Hi jjg,

I think Trey has mentioned that they haven't done any studies on the the reduction of Glivec once PCRU has occurred. I asked my specialist about doing it - he said no, he would rather I changed TKIs then reduce dosage. His next comment was that it could be difficult to return to Glivec once you've said side effects are intolerable, my side effects are manageable and I'd rather have a couple more TKIs up my sleeve, so I guess I'm staying on 400mg. But I haven't quite got to the magical PCRU so it doesn't really matter. Have a chat with your specialist to see what they think.

On another note once you get below 0.02% (MMR), you can no longer tell how you are traveling. Government here doesn't believe it is of any benefit tracking the level of BCR-ABL under that.

Gerry

[hannibellemo]

GerryL,

Just wondering about your post on .02% being MMR. On the International Scale .1% is MMR, but I'm not sure if you are referring to the IS. If you are however, and you are at .02% you are way below MMR. Congratulations either way!

Pat

[GerryL]

Hi Pat,

You're right about the International Scale, I was just indicating to jjg that once she gets below 0.02% we won't get anymore information in our reports (in Australia) apart from the results saying we are still showing positive for CML. I'm below 0.02%, but I have no idea exactly where I am under it. I guess on the bright side, it stops us from worrying about fluctuations in those lower levels.

Hope you're having a lovely day.

Gerry