14 replies to this topic

[R0f03l]

Greetings my name is Rafael ,
I live in Brazil have reported my drama 1 year of use of Imatinib mesylate ( Gleevec generic ) http://community.lls...ib/#entry184437

 

I decided to return to practice a sport, I wanted to make swimming more I find a sports center where I live ( country of the Olympic Games 2016) or martial arts where I live has more is very busy due to not having other sports besides football.

 

 

So I decided to continue with my Street Workout drills, because I'm sure I can not play a high level of sport ( one of my few joys I have in life ) in the square close to home the problem is that I always feel absurd cramps to me stops the practice for a long time because of the cramps . These cramps are only in the upper body ( upper arms and breasts ) . Someone tries to practice physical activity constantly ? And as it does to solve the problems of cramps ?   You have a group discussion about it in the US? Hugs expect any answers.

 

So I decided to continue with my Street Workout drills, because I'm sure I can not play a high level of sport ( one of my few joys I have in life ) in the square close to home the problem is that I always feel absurd cramps to me stops the practice for a long time because of the cramps . These cramps are only in the upper body ( upper arms and breasts ) .

 

Someone tries to practice physical activity constantly ?

 

And as it does to solve the problems of cramps ?  

 

You have a group discussion about it in the US? Hugs expect any answers.

[JRsBoo2]

Hi Rafael,

 

I do not take Gleevec, but I know that others have experienced cramping on it and other TKIs.  There is another person in my town that I know has CML too, and he took Gleevec for over 8 years.  He did a lot of work outs, swimming and biking and running, but he was very active before CML, so I don't know if that helped.  

 

I know you are not alone here, hopefully someone else with more experience like yours will answer you.

 

Keep doing as much as you can comfortably.

 

Hugs,

Caroline

[thatguy]

For me, I didn't have that experience on Gleevec. But I can tell tell you, most side effects that arise from tki's in my experience seem to disappear after a month or so. I don't know, or missed whether you said this has been for a while. ..

[Sandeep]

hi i am on gleevec from 5 years.

 

i feel little weak. Puffy eyes . swollen face. and Bone pain.

I like going to gym. I avoided for first 4 years because whenever i go i fell weak and after 10 days i am completely low in energy an i used to stop.

 

Now from past 6 months i started again but little cautious now. Energy levels are high. other than occasional bone pain i am fine with doing physical exercises.  just taking enough rest to recover and i am fine after.

 

infact  i think being normal and doing whatever we want is best for us. 

 

just wanted to share my experience. Any grammatical mistakes... pls excuse me.

 

rgds

[R0f03l]

Hi Rafael,

 

I do not take Gleevec, but I know that others have experienced cramping on it and other TKIs.  There is another person in my town that I know has CML too, and he took Gleevec for over 8 years.  He did a lot of work outs, swimming and biking and running, but he was very active before CML, so I don't know if that helped.  

 

I know you are not alone here, hopefully someone else with more experience like yours will answer you.

 

Keep doing as much as you can comfortably.

 

Hugs,

Caroline

Thank you Caroline for helping the side effects are a little better.

Continue in sports practices on a regular basis, the Cramps also continues.

[R0f03l]

For me, I didn't have that experience on Gleevec. But I can tell tell you, most side effects that arise from tki's in my experience seem to disappear after a month or so. I don't know, or missed whether you said this has been for a while. ..

 

I already have more than 1 year of use of imatinib and still feel quite side effects on imatinib.

I feel sorry for my limitations but I am following.

[R0f03l]

hi i am on gleevec from 5 years.

 

i feel little weak. Puffy eyes . swollen face. and Bone pain.

I like going to gym. I avoided for first 4 years because whenever i go i fell weak and after 10 days i am completely low in energy an i used to stop.

 

Now from past 6 months i started again but little cautious now. Energy levels are high. other than occasional bone pain i am fine with doing physical exercises.  just taking enough rest to recover and i am fine after.

 

infact  i think being normal and doing whatever we want is best for us. 

 

just wanted to share my experience. Any grammatical mistakes... pls excuse me.

 

rgds

Unfortunate rgds, already pasei by the same situation as you.

 

I just returned to practice more intense sport with enough limitations (because of cramps).

I only returned to practice physical activity because I like to keep me moving and stand still I think it would be worse for me. I am always willing to help you any questions I am available.

Regarding the language I did not know how to write English unfortunately !!!!

[Jerry.s]

Hello Rafael I been on gleevec for about 18 months and after dx I took 6 months off and only did light walking or light jogging . After that I went back to practicing jujitsu and I also had the foot and leg craps so I drink one to two coconut waters before a hard work out and they seems to help a lot . I hope Thai helps you I could live without juijitsu

[beno]

I have a torn labrum and arthritis in my right shoulder.  I tore the labrum at 18, had surgery at 22, re-tore it at 37, and it has degenerated to the point that another surgery is no longer an option.  Prior to CML, I had the pain controlled pretty well with ibuprofen, but it is getting really bad now.  I've been on Sprycel since April 5th and was told not to take any NSAIDs at the beginning of treatment and now my onc has okayed ibuprofen at a low dose, no more than 800 mg per day.  They limited my NSAIDs due to low hemoglobin and platelet counts during the initial treatment, but my counts are improving even though they are still low.  I was just wonder if anyone thought the joint pain might be side effects of Sprycel or if this is really joint pain from the arthritis.  My oncologist has okayed me to get cortisone shots, which I have done in the past, but if the pain is a medication side effect I don't know if cortisone will even help.  Not to mention it is another trip to the doctor and more time off work which I have had plenty of in the last 10 weeks.

[Bronson_CLE]

Hi Rafael, I have been on Gleevec for 3 months and have leg and foot cramps, mainly at night.  My onc. told me to

take 400mg of magnesium daily or start drinking tonic water which has quionine.  I don't cramp up during exercise, just wakes

me up in the middle of the night.

Hope this helps.  Ask your onc. if it would be helpful.

[rcase13]

I have a torn labrum and arthritis in my right shoulder.  I tore the labrum at 18, had surgery at 22, re-tore it at 37, and it has degenerated to the point that another surgery is no longer an option.  Prior to CML, I had the pain controlled pretty well with ibuprofen, but it is getting really bad now.  I've been on Sprycel since April 5th and was told not to take any NSAIDs at the beginning of treatment and now my onc has okayed ibuprofen at a low dose, no more than 800 mg per day.  They limited my NSAIDs due to low hemoglobin and platelet counts during the initial treatment, but my counts are improving even though they are still low.  I was just wonder if anyone thought the joint pain might be side effects of Sprycel or if this is really joint pain from the arthritis.  My oncologist has okayed me to get cortisone shots, which I have done in the past, but if the pain is a medication side effect I don't know if cortisone will even help.  Not to mention it is another trip to the doctor and more time off work which I have had plenty of in the last 10 weeks.

I know it is yet another trip but a shot of cortisone can do wonders.

[R0f03l]

Hello Rafael I been on gleevec for about 18 months and after dx I took 6 months off and only did light walking or light jogging . After that I went back to practicing jujitsu and I also had the foot and leg craps so I drink one to two coconut waters before a hard work out and they seems to help a lot . I hope Thai helps you I could live without juijitsu

 

Nice.

I also like martial arts I was born in the cradle of Brazilian jiu jitso, but do not do martial arts to feel strong cramps and already take enough water coconut and solves very little the cramps problems.

 

Jerry could tell me what you do to have less cramps and how long trains jiu jitso?

[R0f03l]

I have a torn labrum and arthritis in my right shoulder.  I tore the labrum at 18, had surgery at 22, re-tore it at 37, and it has degenerated to the point that another surgery is no longer an option.  Prior to CML, I had the pain controlled pretty well with ibuprofen, but it is getting really bad now.  I've been on Sprycel since April 5th and was told not to take any NSAIDs at the beginning of treatment and now my onc has okayed ibuprofen at a low dose, no more than 800 mg per day.  They limited my NSAIDs due to low hemoglobin and platelet counts during the initial treatment, but my counts are improving even though they are still low.  I was just wonder if anyone thought the joint pain might be side effects of Sprycel or if this is really joint pain from the arthritis.  My oncologist has okayed me to get cortisone shots, which I have done in the past, but if the pain is a medication side effect I don't know if cortisone will even help.  Not to mention it is another trip to the doctor and more time off work which I have had plenty of in the last 10 weeks.

 

I had some similar problems with its well.

abs.

[R0f03l]

Hi Rafael, I have been on Gleevec for 3 months and have leg and foot cramps, mainly at night.  My onc. told me to

take 400mg of magnesium daily or start drinking tonic water which has quionine.  I don't cramp up during exercise, just wakes

me up in the middle of the night.

Hope this helps.  Ask your onc. if it would be helpful.

tonic water I ever made and have not seen any different effect, now 400mg of magnesium I never did the test and never my hematologist recommended nothing to take.

 

 

The problem that magnesium in Brazil is very expensive cost !!!!

But it would be interesting to know what magnesium brand that you make use of?

[Jerry.s]

 

I had some similar problems with its well.

abs.

 

 

 

Nice.

I also like martial arts I was born in the cradle of Brazilian jiu jitso, but do not do martial arts to feel strong cramps and already take enough water coconut and solves very little the cramps problems.

 

Jerry could tell me what you do to have less cramps and how long trains jiu jitso?

 

 

I train jui jitsu about 3 times a week and some times also do kickboxing.   I know I am going to sweat a lot I drink about 1200 to 1500 mg of potassium via coconut waters before and about 900 mg after if I don't my feet will cramp badly were I cant stretch out my foot.