My Dad is 74, a very young 74, and last Friday we found out he has CML - I posted on another site and Jack (again - many thanks Jack!) sent me a link to this site along with Trey's Blog - which is AMAZING! They have prescribed Tasigna - Dad has put the script on hold; the entire CML can really make your head spin, so much information to understand - this has been caught very early - white count at 23 - BMB does show the Philly Chromosome - he is concerned about the side effects, quality of life, feels like is just a dollar bill sign etc. etc. He was doctoring at Henry Ford Hospital then we took him to U of M in Ann Arbor, MI for a second opinion - at U of M he is doctoring with a Dr. Talpaz - from what I have read he is one of the doctors that helped develop the original med to the market - Gleevec - and started at MD Anderson, he is suppose to be one of the best - can anyone confirm this?? As suggested in Trey's blog - we have asked for all his results to be sent so we can look at them - it just seems the doctors come in tell you you are confirmed to have CML and you need to get on the meds NOW - not much discussion on what specifically the test results should - so I am not sure he had a FISH test or the result, what the PCR test showed or even what the BMB showed except that it did have the Philly in it, no blast cell that he briefly meantioned and that it was in the very early stage - oh and that his white blood cell cont was 23 - I have asked forall the results to be sent so we can see for our own eyes - you know they just want you to "trust" them - they are the doctor.
The entire insurance thing is another head spinning event - my Dad, because of his age has Medicare with a supplemental gap insurance through Blue Cross Blue Shield - Medicare will only pay a very small amount and Blue Cross pays some (something about being in the donut or the hole - no joke) my sister has been dealing with the insurance part and she has come to the conclusion that it will cost my Dad some $10,500.00 out of his pocket per year - as the med ordered is $90,000.00 per year (because there is no generic)- my Dad has been financially responsible his entire life so he is not a candidate for any type of assistance.
I see that Penn State may have stumbled onto a cure with the fish oil - not sure the funding will go through if there is no money to be made - any thoughts here as my Dad has went and got himself some fish oil and is hopeful of not taking anything but that - my sister plans to call Penn State -
Lastly, I could not help but notice when reading through the other blog that the Gleevec is starting to not work on a lot of people - any thoughts why this would be??
Any and all information that anyone can provide would be greatly appreciated! God Bless!