Stroke like symptoms on Gleevec

Hi Mel,

Tkis and particularily Glivec-imatinib can have substantial impacts on the musculo -skeletal system.Apparently a lot of side effect conditions dont show up on MRI scans . A specific condition which involves muscular inflammation is myositis-there are different types but one is an auto immune reaction;the immune system goes into overdrive and reacts .In a severe form it can lead to difficulty swallowing and in breathing and walking and  very  rarely can affect the heart and brain.I wonder if you had your creatine kinase (CK) levels in your blood taken.? If your CK level is elevated it would indicate inflammation of the muscle enzymes-mine has been over four times what it should be and accounts for a lot of muscle inflammation and weakness and is likely to be tki related due to the toxicity of the drug I am told.My previous oncologist was fairly clued up on such conditions and the neurologist I saw said sorry you will just have to live with it.

Your symptoms seem to be quite severe but if  your CK is normal then perhaps it is something else and would not be myositis.I have to engage in regular mild exercise and an anti inflammatory diet (google myositis and diet).

Tingling and pins and needles might indicate the beginnings of peripheral neuropathy and the eye issue is one where the optic nerve has been affected-both can be a possible side effects of your tki especially after long term use.

As a postscript have you had you calcium,magnesium and vitamin D levels checked? Another tki like Dasatinib might give relief but then you run the risk of pleural effusions as a side effect if your dose is the high one i.e 100mg.

I wish you well

John

Thanks so much.  I have been on multiple regimines however I became toxic on all that was tried. Gleevec is my savior and apparently executioner. I am on 400 QD. And am use to the regular side effects. While I was in Cleveland clinic a resident put drugs.com on my phone. One of the symptoms is loss of use on one side of the body sudden and severe. This blew me away. I’ve never heard of any one who has had this symptom 

Mel, really sorry for your situation but I can't help but ask, how is it that you were still on Gleevec 400mg after twelve years.  Can you tell us a little about your CML history that caused you to be on 400mg for that long.

Thanks,
Buzz

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past year. The app drugs . Com as well as the FDA web site says it’s rare but sudden loss of one side although rare happened to me. I can’t speak correctly or can I swallow with out the use of thicket. I am also having bursts of VTack. I code blue in the Drs office. My sx are sever as my left side is useless.  Please check Drugs.com as well as thuds site. The sx r real and although rare I have it. I have to use thicket to swallow fluids. Please feel free to look at those websites and get back with me. I humbly thank you for your time and concern. My cml is ph +. I am grefull for every day. These sx r Gleevec related as is the herpes, bleeding eyes, bone pain,  thanks again.   Mel 

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past 12 years. The app drugs . Com as well as the FDA web site says it’s rare but sudden loss of one side although rare happened to me. I can’t speak correctly or can I swallow with out the use of thicket. I am also having bursts of VTack. I code blue in the Drs office. My sx are sever as my left side is useless.  Please check Drugs.com as well as the fda site. The sx r real and although rare I have it. I have to use thicket to swallow fluids. Please feel free to look at those websites and get back with me. I humbly thank you for your time and concern. My cml is ph +. I am grateful  for every day. These sx r Gleevec related as is the herpes, bleeding eyes, bone pain,  thanks again.   Mel