Posted 25 July 2015 - 11:11 PM
My first post, let me introduce myself. I am 41 and was diagnosed on my wife's birthday at the end of May'15. What a way to spend her birthday at the hospital. My WBC was 432k and my spleen was huge. Last year, I had a lot of severe muscle cramping issues in my lower legs, usually at night. Not sure if that's related or not, but it has gone away since being on treatment. At the beginning of this year, I started having night sweats, losing weight, tired, etc. When I felt the firmness in my abdomen and had feelings of fullness, I finally went into the doctor. Went pretty fast from there, CBC, CT scan and within 24 hours I was at the hematologist/oncologist getting the diagnosis followed by a bone marrow biopsy. Bone marrow was completely dry, I think he said 100% cellularity, something like that. Then there was the concern about telling my 4 children (16, 15, 13 and 10 yrs old). Long story short, it was fine and they are fine given the very positive outlook I could give them. I was on hydroxyurea for a few days and then onto Sprycel. Within a few weeks, my WBC was down to ~3k, but my platelets also dropped below 50k and went as low as 32k. So, I had to go off treatment for 3 weeks, when my platelets finally jumped to 108k. Interestingly, my WBC stayed low the first two weeks off treatment and only started coming up again in the 3rd week (~29k). After 1 week back on meds platelets jumped to 175k, but WBC also jumped to 88k. After 2nd week back on, WBC is back down to 10k, but platelets took a hit again at 98k. So, I'm worried about 100 mg dosage and being able to stay on meds. Going off and on is no fun, second time going on was tougher than first time. Headaches for a week. I live in the Portland, OR area so I am going to see Dr Druker at OHSU on Thursday. Really excited. I was supposed to see him a month ago, but on the day of my appointment, he had to appear on Good Morning America with Phil Knight to announce that OHSU had reached the goal of raising $500M and it would be matched by $500M from Phil Knight. So, my appointment had to be rescheduled, LOL. What an awesome accomplishment that should make a huge difference for cancer research. Exciting times. Thanks to everyone who posts here. I have been watching from the shadows and it has been really helpful as I learn about my new normal and what to expect.