Message for Shayln

[Guest guest]

Shayln,

It would have been nice to email you personally to respond to your questions but

for some

reason my email to you is not getting through, so I am just going to paste the

email I

wanted to send to you here. SORRY it is so long.....

Dear Shayln,

No apologies for questions necessary! I am more than happy to share my

experiences so

we can learn from each other. I too was diagnosed in June of 06. I started on

400mg of

Gleevec and had no side effects-- life was great. Then in late August my counts

really

started dropping and have continued to drop up to this point. My last test was

--

Neutrophils: .3 Platelets 11 and my hemoglobin has started to get into a

low range as

well.

My doctor took me off Gleevec 15 weeks ago and said I shouldn't go back on until

my

blood counts are more stable. At my last appointment he wanted to put me on

Interferon

while I wait to get back on Gleevec. I really didn't want to do that. I

mentioned that I would

like to try the Neupogen so he gave me a prescription for it. It is very

expensive ($1800 a

month) but he thinks Blue Cross will cover it. Luckily my pharmacy is covering

me until the

paper work goes through. I got it today and had my first injection so hopefully

my

neutrophils will start to improve.

As for my platelets--there is a growth factor called Neumega (Olprelvekin). He

told me he

didn't think we could get it in Canada, but I found out from Tracey (in the cml

group) that

we can access it if our doctor contacts the manufacturer and then Health Canada

approves

it on an individual basis. I'm hoping to getting moving on that after Christmas

and

hopefully my doctor will cooperate. Right now I have a bad cold or infection or

something

and it has really leveled me. I am extremely dizzy and fatigued and have had to

take a few

days off work. It's hard to get better when your body has nothing to fight with.

Now a few questions for you. What kind of doctor are you seeing? Does he seems

to know

lots about the disease? How low are your husbands counts? What percentage of

leukemic

cells did he have when he was diagnosed? I was 98% and so my doctor thinks that

because

the Gleevec worked so well in taking out my leukemic cells my healthy cells are

taking a

very long time to come back. I sure hope he is right.

Best of luck to you as we try to figure out this low count mystery!

Cam