I was diagnosed March '09 and put on 400 mg. One year later, it was bumped to 600 which is where I still stand. Regretfully, the bone pain and charlie horses are part of the package. My doctor said it was OK for me to try salonpas, pain patches, and they have been helpful for my back, hip and knees. You can find them in Walgreens and most stores. The ones I'm referring to are the small patches that come in a 40 count box.
As to the charlie horses, I sleep with a bar of Dial soap between my bottom and top sheets. I thought it was an old wives' tale when someone suggested it but for 4 years, I have yet to wake up with those awful cramps. I still get them other times and they are painful. You will find on this site really positive, warm and caring people, many who have been living with CML far longer than I. A positive attitude is so key to good results. We have an illness that now has numerous drug therapies and many, many people have outlived their original diagnosis by a very long time. As a new member of a group none of us would have wished to join, I welcome you and please feel free to post any time you have a question. Some of the best advice you will get is here and without question, the friendship, support and love the fellow CML warriors give is priceless. Best wishes to you as you continue on the journey. Marcie Baltimore -----Original Message----- From: mylissal <mylis...@yahoo.ca> To: cmlhope <cmlhope@googlegroups.com> Sent: Sun, Mar 10, 2013 10:37 am Subject: [CMLHope] Newly diagnosed with CML 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
