Hi Peter, pleased to meet you, I was also diagnosed "by accident" in May this year when I went to give blood. I got a call the next day saying to see my doctor quickly - my WBC was 71,000 and my platelets 1,2 million. I'd never really had any symptoms apart form fatigue (but as a 38 year old Mum of 3 - 1 mentally handicapped- I thought this was normal). I had a bit of an upset at the start because the local lab. who rechecked my blood mistakenly told me that I had 29% blasts, so when I arrived at the hospital a week later to see my hematologist, he thought I was in blast phase, luckily he was kind enough to ring me the next morning to say that I was solidly in chronic phase. I was put on Hydrea while the drs decided how to treat me and a month later I started in the French SPIRIT Trial - the Glivec 400mg & Ara C branch. At 3 months my BMA still showed 97%ph+ (but I had been off Glivec for 5 weeks as a result of low counts (Ara-c), my PCR had however dropped from 20% to 11,5%. I have now been on Glivec without interruption since Sept. 27th, so am hoping for better results for my 6 month BMA on Jan.11th. One more thing, I'm lucky to say that I don't really have any side effects from Glivec apart from feeling very tired. Hope my story is of interest to you. All the best for the year ahead, Barbara--- In [email protected], "traceyincanada" <[EMAIL PROTECTED]> wrote: > > Hi Peter, > > Welcome to the group that none of us wanted to join. Your diagnosis > story isn't really that strange except that your WBC is one of the > higher ones. Most are in the 200-300 range. > > I think the majority of us were diagnosed "by accident" and as a > result surprised our doctors. Here's my story. > > I had been having night sweats so I went to my GP. His answer > was "some people are sweatier than others". I was relieved to know > that it wasn't anything that would require any testing because I'm > not fond of being poked or prodded. I knew it couldn't be menopause > because I was only in my late 20's. Well months passed and > eventually years and it just got worse. > > By this point I was sleeping with a bath towel and soaking through > it every night. All my friends were older and some were going > through menopause and said that even then, they didn't sweat THAT > much. I thought something had to be wrong because it got to the > point where the bath towel was so wet that it wouldn't dry for the > next night and I had to go out and buy a whole new set of bath > towels and more sheets for the bed because I couldn't keep up with > the laundry everyday. I kid you not, the towels were so wet, I > could actually wring them out in the morning. > > I got on the trusty internet and looked up night sweats and found > leukemia everywhere. That made me panic so I found a new GP and > made an apointment. By this time I had also moved to a new province > since the last time I had mentioned the night sweats to a doctor (I'm > Canadian). I saw this new doctor and mentioned how bad I was > sweating and that I had seen leukemia on the internet. He checked > me over and reassured me that it couldn't be leukemia because I > would have an enlarged spleen, swollen lymph nodes, extremem fatigue > etc.... I had no other symptoms. Well I was tired, but who isn't > right? Other than that, I was carrying on a normal, busy life... > finishing up my University degree that I had posponed earlier in > life, volunteering for a number of organizations and doing what > everyone else does in the prime of their life. > > Nevertheless, he said I'll send you for a CBC because they're a good > idea to have once in a while anyway. Well I sat on the requisition > for months because he had reassured me enough to think that there > was no hurry. Finally I did go (on a Monday) and got a call two > days later (on the Wednesday) telling me to come in and discuss my > blood results. He told me how shocked he was to see my WBC at 85 > and my platelets in the millions and that he had talked to a > hematologist who was fairly sure I had CML. I had an apointment the > next morning (Thursday) with the hematologist where I had a BMB and > started Hydrea. I was never hospitalized. > > Before I started Gleevec, my hematologist sent me to another > hematologist who he felt would be better suited to treat me because > he had more experience in CML. This new doctor suggested that I > have a BMT because of my age (I was 31 at this point) but I insisted > on trying Gleevec first. I had done a month of research on the net > and was confident that I was making the right choice although I > don't think he appreciated that I had a mind of my own. The funny > thing was that Gleevec had just been approved in Canada a few months > earlier so had I gone for my blood test when I first got the > requisition, who knows what treatment I might have endded up with. > > So to make a long story short. I started 400mg of Gleevec and > reached CCR after 5 months. After 9 months I was PCR negative. > > After a year with this doctor who kept telling me that no matter how > well I did with Gleevec, I'd still eventually need a transplant, I > went back to the first hematologist I had seen in the beginning who > I got along better with and I've been with him ever since. > > It's now been 3 years and I continue to do well. > > Take care, > Tracey > dx Jan 2002 > 400mg Gleevec Feb 2002 > CCR July 2002 > PCR neg Nov 2002
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