Re: CML - the early days- & Skip

[Guest guest]

, thank you for recounting your journey. I was diagnosed in

Feb. 2004 and joined the CML chats about that time. I do remember

many of our Warriors and their trials before Gleevec was approved.

Skip, thank you for replying with your journey. I am most grateful

for your journal. After 3-1/2 years of being CCR and Q-pcr negative

I have began experiencing many of the hemaglobin and red cell

problems for the last 6 months and had been receiving transfusions

about every three weeks. My ONC-hematologist is puzzled and has been

in contact with MD and we have not been able to resolve the

problem. I am contacting him so that he will have a different

approach.

Huffman

dxd 2/04

400mg Gleevec 3/04

CCR 11/05

PCR Undetectable 11/05

Q-PCR .0014 3/06

>

> Hello all,

> I can recall the days before interferon, before

> transplants, and anything else. There was only one

[Guest guest]

Hi ,

I am sorry your having a problem, I would caution you

though to have your ferritin checked. I ended up on

Desferal, which is a real pain. I am now on Exjade (

http://www.novartisoncology.com/page/exjade.jsp )for

the buildup of iron from Hgb infusions (was up around

2400). At least I do not have to inject it as I did

with Desferal for 12 hours a day. (do not mind needles

but with low platelets my tummy was getting pretty

sore) and watch the ANC mine is down below 500, and

that kind of puts a crimp in going into crowded

places. On the other hand I feel fine I have a good

quality of life. I agreed to this trial and I will see

it through and take whatever comes along, I have a

portacath to make the infusions easier, that makes

life better. If at the end of the day, it helps me

and someone else it will be worth it. As it is I was

the first in this area on Exjade and now there are a

couple more trying to get on it. I think its the best

thing since sliced bread.

Be safe my friend.

SkipD

dx'ex 1978.

http://easyskip.tripod.com

my diary of twice weekly blood counts

--- dickie_64012 <rbhuffman@...> wrote:

> , thank you for recounting your journey. I

> was diagnosed in

> Feb. 2004 and joined the CML chats about that time.

> I do remember

> many of our Warriors and their trials before Gleevec

> was approved.

>

> Skip, thank you for replying with your journey. I

> am most grateful

> for your journal. After 3-1/2 years of being CCR

> and Q-pcr negative

> I have began experiencing many of the hemaglobin and

> red cell

> problems for the last 6 months and had been

> receiving transfusions

> about every three weeks. My ONC-hematologist is

> puzzled and has been

> in contact with MD and we have not been

> able to resolve the

> problem. I am contacting him so that he will have a

> different

> approach.

>

> Huffman

> dxd 2/04

> 400mg Gleevec 3/04

> CCR 11/05

> PCR Undetectable 11/05

> Q-PCR .0014 3/06

>

>

> >

> > Hello all,

> > I can recall the days before interferon, before

> > transplants, and anything else. There was only

> one

>

>

>

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