Dear Newly Diagnosed: The side effects you’re describing are pretty common. They are caused both by CML and treatment. What is important to know is that the longer you are in treatment the more the side effects will diminish, and there are many things that you can do right now to mitigate the side effects and make life easier.
This presentation from Carolyn Blasdel, CML nurse practitioner who works directly with Dr. Brian Druker, one of the developers of Gleevec, will help you with managing side effects including muscle cramps. Basically mineral depletion causes muscle cramps, and calcium and potassium supplements can help. http://www.vimeo.com/16220208 This PDF file from a presentation she did for LLS has helpful advice too. http://www.cancereducation.com/cancersyspagesnb/transcripts/lls/35/aawe.pdf Your oncologist was trying to reassure you in mentioning that you may have to try a different drug. There are now more options for CML patients than ever before - six of them - and treatment has become more personalized and tailored to the individual. If you are in the US I suggest you visit the National CML Society website for more information at http://www.nationalcmlsociety.org/ If you are in another country then let me know and I will see if there is a CML advocacy group in your country and provide information. Wishing you the best, Pat Elliott CML patient and advocate On Mar 6, 10:12 pm, [email protected] wrote: > I was diagnosed with CML in Oct 2012. It was funny, I thought what I was > feeling was stress related due to my job and/or perhaps early onset of the > change of life. Symptoms were extreme fatigue, waking up tired after a > full nights sleep, night sweats and fever, weight loss and discomfort when > sitting. Finally went to a doctor and asked them to check my hormone > levels and do a complete physical. Dr sent me for an ultra sound too > because of a hard lump in my side. Turns out my spleen was twice the size > it should have been and my blood test came back with really high white > cells, low red cells and high platelets. Dr referred me to an > Oncologist who has put me on Gleevec. Today, my white cells are within > normal, my red cells are still a little low and my platelets remain higher > than they should be. Had to go on a disability leave from work due to the > pain from trying to sit - from the enlarged spleen and joint pain. Have > been off work since late Nov 2012. I currently have been experiencing pain > in my hip and knee joints, as well as excruciating pain in my shin bones. > Is this normal? Is it the Gleevec causing it, or the leukemia? > > Also having really weird muscle cramps - charlie horses in my legs that > hurt bad enough to make me cry and cramping in my fingers and toes. Feels > like my hands and feet will never be warm again....am really looking > forward to summer. Anyone else experiencing this? > > The Oncologist says I might have to try a different drug which is scaring > me, as Gleevec has brought down my white counts...what if nothing else > works? Has anyone found anything that relieves the pain? I've tried A535 > and hot baths, heating pads etc Have been told I can't take aspirin, > tylenol or advil as they interact with Gleevec. GP recommended trying > massage therapy, but when certain spots on my knees and legs are touched I > can't bear it. Would be really interested to hear if anyone else has found > something that helps.... -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
