Leukemias

[Guest guest]

Dear Sharon,

If you will go to the LLS site, you will find out more about the different

leukemias. Sometimes you can have chronic and be in PCRU one week and next week

find you have AML and need a bone marrow transplant. There should be an 800

number that you can call and speak to someone who will give you additional

information, such as the names and addresses and even emails of some doctors. I

posted Dr. Druker's address last week. I now have Carolyn's if anyone wants it.

They also lump in together with the leukemias, lymphoma and any other disease of

the blood that may occur.

I was diagnosed at 67 in 1996 after after my birthday. Some present. When

I was into it about 4 years, I went to MDACC for better treatment and trials.

The doctor told me then I was in late chronic. That's what I have been all of

my CML life - chronic. I was 100% PH+ postive until my last BMA when it showed

that I was only 65% Ph+ and on a low dose of SKI 606. I hope I am going through

all this pain and sickness not for naught. IF it comes back with another

decrease in PH+ cells, I will certainly think I am finally on the right track.

My aim was to get to CCR and then go for the Peptide vaccine. Won't happen, VX

680 and the Peptide Vaccine have not made the grade and for all I know are in

file 13 as we speak. LOL.

Yes, it it true that younger people get CML, but it is rare, the median age

is 50 to 67. They are treated the same way- with Gleevec, but for younger

people with AML or neuroblastoma, they are given different chemotherapies than

an adult with AML. Normally the adults have the BMT ASAP. Many children go to

children's hospitals such as St. Judes and are cured of AML. I met a dental

assistant who had leukemia as a small child and now has 2 children and is living

a normal life. My chiropractor's brother had it when he was a teenager, but

only had chemo and not a BMT. He is doing well. I remember him because after I

was diagnosed, he was one of the first persons to contact me. He asked if he

could send me a letter from a man whose son had just been diagnosed with AML.

It was very said and I don't know the outcome, but any kind of leukemia for a

child I think is sadder because you normally would think a child would grow up

to adulthood without these serious diseases.

The word chronic caught my attention, I don't know anything about the

subject matter you all are discussing, but that's my 2 cents and maybe all that

it's worth, as I am not a doctor, so I stick to what I know more about without

getting technical.

Receive your blessings,

Lottie