Living large with CML

[Guest guest]

Dear Sharon,

We have several Sharons in this group, so you are in good company. I have 5

sons, and I have never had any diagnosis concerning them that would cause me to

lose sleep over it, except when one had high blood pressure when he was called

for the draft. Just that in itself was enough to be scared.

Tragic and ominous as it may sound, he could have worse. People no longer

die of CML as we have so many drugs out there and more in the pipeline. The

first drug of choice because of it's record is Gleevec. They have had 10 years

to test it on patients and the majority tolerate it with some side effects and a

few are unable to, but they are in the minority.

I am in the minority, but I was diagnosed at 67 and just celebrated my 80th

birthday one week and my 12th CML anniversary the following week. I hope that

gives you hope. So, I think your son has more to fear from Cystic Fibrosis than

from CML. That is a double blow, but please don't feel guilty that you have

passed on a genetic disorder to your son. There is nothing you did to cause it.

There is nothing for you to feel sorry about in that regard. On the opposite

side of the argument you can be proud that you have raised such a wonderful

human being as your son.

If I lived on the west coast, I would feel very lucky to have Dr. Neil Shah

as my doctor. Your son is falling into good hands, as he is outstanding in the

field of CML. His name is prominent and at the top of the list for one of the

best - a leader in understanding CML.

That being said, now you must focus on learning all you can about the

disease to become more knowledgeable. Let the doctor take over, he's the

teacher and you are the pupil. You will have company, as we have other mothers

of children with CML and you will be hearing from them, as well. Very few in

this group have had a transplant, they are in the minority. Cross that bridge

when you come to it, and in all probability, he will not need a transplant.

There is a doctor in Scotland whom we are told is as close to finding a cure as

losing your car keys.

It will be difficult for you to fathom all of the information that you

try to assimilate, but I'm sure that as you learn (very rapidly), you will have

less angst and have more confidence. There are over 900 members on this list

and I'm sure that all would tell you that they feel more confident once they

belong to a good support group, and their load was a lot lighter after finding

all the assurances of t he members. You will have new words and new numbers to

learn on his WBC that you will keep as a record to compare with later figures.

I have kept mine for 12 years for comparison.

Take one day at a time and do not project what will happen in the future, It

is pretty much out of your hands anyway. What you need to do is remain calm and

let this group help you over the tough spots.

Blessings,

Lottie