Hi Everyone: I recently had my 3-month checkup at Cleveland Clinic. I have been experiencing double vision - notice it most when outside (sun) and driving. People 10 feet away - their faces are just a blob. Road signs are 2 of them superimposed upon each other, just about impossible to read. I can see well enough to keep my vehicle between the lines, but, anything I try to focus on is really a complete blur. Once I return inside, out of the sun, the double vision/blurriness dissipates. I have been having chronic headaches, pretty much all over my head - sharp pains in the left side of my head. My memory loss has become almost frightening. Long and short-term. But, it is random. I can have a complete blank regarding a conversation 2 days ago - but, other times I remember everything. Loss of words, complete blankouts DURING conversations, etc. Sometimes I feel downright stupid. I was told that I was at 0 after the first month of treatment back in February 2008 (Gleevec). They didn't believe the lab results, but they kept coming in the same way month after month. A BMA in July confirmed those results.
In a nutshell, they have taken me off the Gleevec due to my symptoms and I had a MRI/MRA of the brain last week. They said they were looking to see if the small vessels in the brain were dilated. (I have not been informed of the results yet) Quite frankly, I can't believe how much better I feel off the Gleevec (especially mood-wise). I feel like "myself" again. It is almost like the Gleevec blunted my sense of humor. I couldn't even laugh. I must admit the crippling depression I was experiencing has become less and less over the last few months. I thought after awhile I would adjust to the Gleevec, but the difference in my personality is quite apparent. I'm not angry, sad, negative, etc., etc. CCF is sending me to see a neurologist ophthalmologist to assess the memory loss, headaches and vision problems. I have been off the Gleevec for a little over a week and most of those symptoms have lessened or disappeared. Problem is, I am afraid to be off the Gleevec. I don't want the "bug" to come back. I don't want to be put on those old drugs that are not nearly as effective (interferon, hydroxyurea, etc.). Has anyone else had a similar experience? I do believe that once the neuro/ophthal. clears me they will put me back on the Gleevec. My counselor was stunned at how good I looked when I saw her the other day. She had never seen me prior to "Gleevec eyes." I am afraid if I am off the Gleevec for too long, it will be less effective. I realize these are questions for my doc, but, truth be told, I get more information from this site than I do from my doc. Thank you all for being here, you have no idea how much you all help. Kelly --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
