I ve been reading around this forum since my husband got sick, a month ago, and I found a lot of usefull information and nice hopefull thoughts.
Now, since I could not find any answer for our worries at the moment, I decided to write my own topic, hoping there was somebody experiencing something similar, any info would help.
So, I m Daisy (26), living in Belgium and my husband (27) was diagnosed with CML, Chronical phase, Philadelphia chromosom + at the end of november. He was feeling tired and very exhausted after sporting (he was playing soccer 2, 3 times a week) and he was coughing so we thought he just had a bronchitis or so but the bloodtests showed otherwise.
He had 246 000 WBC at diagnosis so the doctor put him on Hydrea 1000/day and Allopurinol for 3 weeks. The first week his WBC counts went down to 200 000, then the 2nd week to 180 000 and afterwards to 168 000. So the effect was clearly diminishing. Then, after few days the doctor put him on Gleevec 400, at that moment his WBC was counting arround 170 000 - 180 000.
He s on Gleevec 11 days now and today we ve received some alarming bloodcounts: his WBC went back to 240 000. It feels very frustating that after a whole month of dealing with the side effects we are back where we ve started. He s now feeling very depessed and I m so frustrated that I can t do anything to support him, since I m worried too.
The doctor said that he should continue with Gleevec for a while, and get some new bloodtest in a week.
I really don t know what to expect, is it normal that he s going in the opposite direction? I noticed that most of the people respond fast and well on G. The doctor said that it may be caused by the fact he stopped with Hydrea, but he s not giving to much info and he s acting very diplomatic.
Since he s feeling very weak, and he s just laying in the bed, I m feeling so scared and I don t know if it s wise to wait for another week.
Thanx again for this great forum, it s nice to see we re not alone