Hi Mylissal:
I responded to your first e-mail in a quick fashion about the quinine. I also had pain in my bones while taking gleevec. The extreme cramping was really debilitating, so the quinine helped. I did take advil, which is naproxen sodium, as the doc said that was much better than Tylenol or aspirin. That also helped with the pain in the bones. Massaged therapy also really helped me get the toxins out of my system caused by the reaction to the gleevec. I had a car accident which allowed me to have coverage through a chiropractor's office for those wonderful massages. My suggestion is a Swedish massage until you can bear the heavier touch later. You must take lots and lots of water(with lemon added is better), before and after having a massage to rid yourself of the toxins. I sure do hope this helps! I've been medicine free for six years while still showing signs of CML. I am still in cellular remission, but not in molecular remission for all but one year of that time. I am a walking miracle, and I am so thankful to God. I do keep a watch on my blood counts to make sure I am still in normal range there. I was on gleevec for two and a quarter years from Feb. 2005 to May 2007 when I had a brain bleed caused (I think) by the gleevec. Two more small brain bleeds followed. So then in May of 2010 I had a full-blown stroke after doing much exercise repeatedly. Apparently it was too much for me with this weakness for brain bleeding not caused by clots. Every day is a gift! Many many wishes for a quick recovery, Susan Zimmerman From: [email protected] [mailto:cmlho [email protected]] On Behalf Of [email protected] Sent: Thursday, March 07, 2013 12:13 AM To: [email protected] 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 [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. -- -- [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.
