My husband was diagnosed last August at age 52. Aside from CML he was in excellent health, felt great and looked great. No symptoms. It was picked up on a routine physical. Our kids were 15 and 17 at the time. We waited almost a month to tell them, mainly because it took that long for Jim to get a bone marrow biopsy done and to meet with the doctors at Johns Hopkins. We wanted this information, especially the doctors' answers to our questions, in hand before we talked to the kids. When we did, we had a pretty good handle on CML and what to expect from treatment and the future. Their questions were what you would expect: Are you going to die? Can CML be treated? Do you need chemotherapy and radiation? Will you be in the hospital? Will you be okay? Will we be okay? Part of me wanted to tell them right away, but I'm glad we waited because we were able to answer their questions and tell them with confidence that there
was an effective treatment for CML and that the prognosis for a long and happy life, though not guaranteed or without difficulties along the way, was good. They had also seen a neighbor of ours die from AML earlier that year and it was important for us to explain that this was not going to be their father's experience. They were upset naturally, but reassured. In the past year, they've been great. Jim has had his ups and downs with Gleevec. He's on 800mg and has had every side effect Gleevec can dish up, some worse than others. The kids have been helpful and supportive and most importantly have gone on with their teenage lives doing the stuff teenagers do. Today, Jim is doing very well and that helps the kids too. He's had a complete cytogenetic response since February but he's still PCR detectable. We're hoping that he becomes undetectable in the coming year. Hope this helps.
Adrienne
skink1100 <[EMAIL PROTECTED]> wrote:
skink1100 <[EMAIL PROTECTED]> wrote:
I am a 55 male with two children...16 and 11. I was diagnosed last
week...but have few outward symptoms...and am wondering what I
should tell the kids. I do not want to alarm them terribly...but
would appreciate advice from anyone that has dealt with this.
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