Hi Kelly, I know just how you feel; even when my onc explains the FISH or PCR or BMB, I think he is even baffled. I also feel so like I have to take my health into my own hands, as, the same as you, if I mention a side-effect, it is passed over, or I'm told to see my PCD, who knows nothing about CML. My last cbc came back with a lot in the out of range column, and I expected my onc to call, but no, I have to call him and hope I can get him, or just try and treat the situation myself. I have had all the pains you have mentioned; they come and go, except for my heel, which has never healed. Don't worry about complaining; that's what we are here for. The more input we CML Warriors give on this list, the more we can help someone in need. You are a newbie, being dx in 2008, and it takes a while to get use to the meds. I went through a horrible time when I was first dx. They sent me to the hospital to get blood asphersis; that was no fun, and it did no good. When I got out of the hospital, my blood counts were still way to high. I had chills and sometimes just felt like I wouldn't make it through the night. But I did, and the good news is that it will get better. Hang in there and keep the faith. Blessings, Jeanie<3 In a message dated 3/30/2008 10:14:19 P.M. Pacific Daylight Time, [EMAIL PROTECTED] writes:
Hi Jeanie, I was diagnosed by BMB in Dec 2008. When they did blood work at the ER prior to my dx (ER visit due to chest pain) - they noted the elevated white count and, I, too, had giant platelets. I do not know what giant platelets are either and wonder if I still have them as I am in a clinical trial at Cleveland Clinic and no one tells me anything - other than: "chills? I never heard of that." - "back pain? hmmm, let's order an MRI and see if something else is going on."fatigue? is it better since we've upped your Synthroid? (no)." "Depression? well, you've been through a lot." I hate to look a gift horse in the mouth - but they deny all of my symptoms and I see these same symptoms listed on this website all the time. My vision is almost always blurry. I am on 400 mg Gleevec once a day. Last check, my white count was 11,000 - don't know the results of bcr-abl or FISH test (and wouldn't understand them if I had access to them). I don't know if my symptoms are from the disease itself or the Gleevec. I find you all quite inspirational, but at times, I feel quite hopeless. Walking or standing more than 10 minutes is excruciating. Would like to exercise (walk) but the pain is so limiting. Granted, this back pain may be the result of something else, i.e., degenerative disk disease. I am having trouble quitting smoking (I know - what a moron). I hate to be so negative as that is not my true nature. There is so much conflicting information on the web and I understand the basics (Ph positive CML as a result of 2 chromosomes mutating that produce the protein that causes the cancer in the blood and bone marrow). My memory is awful, my eyes are swollen and I can't wear any of my clothes (short of sweat pants). I know I'm whining - please forgive me. I truly believe that stress triggered this disease (high-stress job, caregiver of my father dying of pancreatic cancer, unexpected death of best friend, my own dx in the middle of all this). Does anyone else feel this way? Thank you for your consideration and inspirational stories - I truly value them. Kelly **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15&ncid=aolhom00030000000001) --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
