Blast

[Guest guest]

Dear ,

I am sorry you are having such a rough time. I have never been in blast,

but have been on Gleevec and Sprycel and a few others.

I really don't understand why your doctor took you off Gleevec if your

counts were going down. Gleevec is the gold standard for most people. Being

off Gleevec for 2 weeks for a wash out period seems a bit much. I have been in

many trials and 1 week was the standard for any washout period. When I was on

my first washout going from an ATRA trial to Inteferon and HHT, my counts also

went crazy. In order to control it, they gave me massive doses of Hydrea and I

began to turn brown, so they aborted that. When they started the HHT infusion,

they discovered they had given it to me too soon and called me back to the

hospital at 4:00 a.m. to remove it, only to put it back on the next day. The

more I learn, the crazier it sounds that I was put through the ringer just to

get in another trial and someone's careless mistake.

I'm so sorry that your plans will have to be put on hold, but you have to

concentrate on your health and the treatments that lay ahead. It's not an easy

road, having CML, but I have never expereienced anything to the level that you

have. Unfortunately finances are a big concern for a lot of patients. You see

a mountain of debt arising, but you can speak to the financial department, the

social worker and discuss all these things with t hem. Perhaps you can even

strike a deal, where they will take what they get from the insurance companies.

I can say that if I was not on Medicare, I would not be able to afford all

of these tests and travel. Some visits are well over $10,000 after they finish

their testing. The drug companies put it in their protocol and our insurance

companies pick up the tab. MUGAs are very expensive and I've had 2 in a very

short period. I don't know where it will all end, but anything to do with

medicine continues to spiral in costs. At least the meds are free when you are

in a trial. If it doesn't work, you move on to another one.

Any time my Hgb goes below 9, I feel like I am on a tortue rack. I had 2

units of blood last week, but that doesn't last very long. Would your insurance

company agree to your having Procrit or Aranesp injections to help you with your

red blood cells. Since Medicare no longer approves it, I have to have

transfusions instead. Please check this out with your oncologist and keep

hounding them. You must feel like holy crap. I do know of people who have been

in blast crisis who are now in remission. It doesn't have to be a permanent

thing. Learn as much as you can and keep hounding the doctors until you get

results and/or answers. Sometimes you just have to take the bull by the horns.

I'll be including you in my prayers and wishing you all the best that your

luck changes and your counts begin to behave and you see good results. I'm 80

and have had CML for 12 years. I have seen a lot of things come to pass in that

time and my advice is to never give up. There are web sites you can visit and

blogs for transplant patients, for patients on Gleevec, Sprycel and others.

Take advantage of anything that you think would be helpful and someone who can

answer your questions.

Blessings and prayers for a quick reversal,

Lottie