3 replies to this topic

[tranier]

My 20 year old son was diagnosed Dec 2009 with CML.  He has been on Gleevec since then and until this week, other than several weeks of going off Gleevec for low counts has not had anymore blast cells.  Today's report showed 8.0 Blast Cells WBC at 2.1 and Platelets at 55.  Dr. will do biopsy Wed to see if he is rejecting Gleevec.  I know you all have ups/downs - just wondering what your thoughts are?  He just ran the Relay for Life 1/2 Marathon in Cleve two weeks ago and completed his 2nd year at University - now busy with a Landscaping job - absolutely no fatigue.. Thanks for your support - he's not "ready" himself for a discussion group such as this - I hope in the future he will realize what a support system it truly is....

[dinasperrys]

Your doctor is doing absolutely the right thing - he has found new blasts and is doing a bone marrow to find out what is going on, and he's not waiting around to do it!! An increase in blasts is always something to take seriously, and doctors prefer them to be about 1% or 2% tops. Your son's treatment will likely be adapted depending on what he finds, particularly since he has had some drug holidays due to low counts. Maybe it is time for him to try one of the other TKIs.

One of the more disconcerting things about our disease is that the Leukie Dragon can twitch his tail at any moment, and we may still feel perfectly well. It is only possible to tell from our blood tests, cytogenetics and PCRs how things really are. Even on diagnosis a lot of us didn't feel ill - I went to the doctor with a bad back, and when she ordered blood tests, the diagnosis was CML! It would be helpful if we felt grotty when things like blasts or mutations developed, but unfortunately it doesn't work that way.

Take care, and I hope this has helped.

Jan

[Trey]

I assume he has had regular PCR tests.  What do they indicate?

Serious runners can have odd WBC counts at times.

The white blood cells do not always grow in a linear fashion.  Sometimes they grow in spurts.  If the test is done during such a spurt, it could look like a problem.  I would have the test re-done as well as the BMB.

[Tedsey]

Jan,

I totally get what you said about the "Leukie Dragon twitching its tail".  So well described.  I think about it all the time, especially when people ask me how I am "feeeeeeling" (that drives me crazy).  Back in 2009, I went for a yearly check up feeling well.  Ironically, my spleen started bulging a little about a week before my appointment and was a little sore.  The rest of my yearly exam is history.  My WBC was 180,000!  So much for running to different specialists for 3 years trying to find out what my sudden 20 lb weightloss was (CBCs showed nothing).  Right before dx, I was literally running around with my baby and toddler in 90 degree weather and walking miles with them in a heavy stroller!!!!!  Go figure.

Right now I feel very good despite low WBC and anemia (but it is much better since my change to Sprycel).  And I don't suffer from fatigue.  Nevertheless, it is very uncomfortable knowing that how you feel does not necessarily mean you are healing.  Very anxiety provoking.  And plenty of people here that are PCRU feel like crap.

Hope the evil dragon keeps you in his favor continuously.

Teds