Kelly: We all went through something like this at the beginning of taking Gleevec. The swollen eyes will eventually be not so swollen. The weight gain will stabilize although it seems that everyone on Gleevec gains anywhere from 10 to 25 lbs. and that doesn't go away unless you begin exercizing and dieting but yes, deal with the back pain immediately. Do NOT allow the oncologist to ignore your side effects. One must be very serious and very determined with the onc. "I have chills and they are very hard on me. Could you please research this, learn what is causing it and figure out how to handle it? Thank you in advance for your efforts." If the onc is not amenable to learning about the side effects then YOU learn about them: there are enough websites, including this one, where the info is available. Novartis has a website, in fact Novartis has two websites. Find the answers to your questions, print them out and then give a copy to your oncologist. As for the smoking...if you actually decide to stop smoking (not 'want to stop smoking' or 'should stop smoking' but decide to stop smoking) you should know what I learned: that the desire for a cigarette lasts about the length of time it would take you to smoke a cigarette. That the first three days are the most difficult because you are hooked on the nicotine...so you are going through withdrawal. And that the mouth cravings for a cigarette can be handled by drawing cool air over your tongue several times, just as if you were drawing on a cigarette. The changes in your body caused by the Gleevec will settle somewhat but some may not go away entirely. You've just started on Gleevec: you have to give it time to do its work, and give your body time to adjust to it. We all go through these changes, we all have depression at one time or another. You'll handle each problem as it comes along. And don't worry about "whining." Everyone on this site has gone through this life-changing experience. It would be surprising if you weren't discombobulated for a while. V
On Mar 31, 8:19 am, [EMAIL PROTECTED] wrote: > 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=a...) --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
