Re: 30 plus years

[Guest guest]

Hi once again

I am over the 30 year mark and for the first 27 years I

was on a drug called Myleran, it was the only treatment

for CML, in fact it was not a treatment it was a delaying

tactic. I was given 2 months to two years to live, as I am

typing this reply I guess I lived over that time. I had a bad

reaction on the 27th year and was put on Hydroxyurea for a few months

to get my spleen down and blood somewahat in the near normal range.

I then went on Gleevec and that lasted about a year or so but my

doc felt that AMN107 (imatinib) would be a good trial for the drug

to see if it could help, well it helped but I had a range of problems

that included low Red and Platelet count. So after a year I am now

on Sprycel. Still low platelet at times down to 1 and zero but I

feel good live a pretty good life only trouble it I had to start

desferol to lower the iron count from so many infusions. I am now

on Exjade which is better but its liking drinking milk on the beach

full of sand.LOL I think there are side effect but we must bear

some troubles after all it is cancer so I am never really concerned,

I have a good foundation in my faith and feel what will be will be.

I hope this is what you wanted. I did nothing special except my belief

and just went along for the ride.

GB

SkipD

> From: Armour <suzzienovember@...>

> Subject: 30 plus years

> skipd_2002@...

> Date: Thursday, August 28, 2008, 5:22 PM

> Hi Skip:

>      Someone mentioned to me awhile ago that there was

> someone who is 30 years with CML, and I guess that person

> was you.  This is amazing.  Do you mind if I ask you to

> tell me your story briefly.

>      Your note to me regarding my concern over the

> platelets really helped to ease my frustration.  I was

> diagnosed in Dec. of 1998, therefore, its 10 years for me

> now.

> I have been on the 400mg. since day 1, and never had to

> decrease or increase.  I guess thats why I got so upset.

>      I hope to hear from you.

>                                                                           

> Thank You

>

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> Suzzie