New Members

[Guest guest]

Dear Jill,

New members are always welcome here. You have a unique story and I

appreciate your using this forum to share it with us. I'm happy to hear that

your husband was able to get his new kidney, even though it wasn't yours. What

a wonderful, loving couple you must be and to have raised such a generous and

loving son is the icing on the cake. Having CML is a shock to all of us and the

majority (99%) found out because they went to the doctor for something else. I

found mine when I had an attack of GERD. Once your body gets adjusted to the

Gleevec, you may very well get some of your energy back and be able to perform

pretty much what you did before, but you may continue to be plagued with

fatigue. We are all on various drugs, so our symptoms are not all the same, but

most have the same complaints of fatigue. There is nothing so precious as

getting your life back, even though we have to forego some of the things we did

before.

I am curious and even ignorant sometimes, and I was wondering how you could

be 150% Ph+. I have been fighting the dragon back for 12 years on many drugs,

but never heard the term of having greater than 100%. Maybe someone can

enlighten me about this term and what it means. Did your doctor mention what

your level of remission was? This is a great topic for discussion with this

group.

Keep us posted on yourself and your husband. Here's wishing you all the

best and welcome to our group. I thought I was really stupid to ask such

dumb questions when I was first diagnosed, but found out everyone had the same

questions on their minds, so we are open to any questioning.

Blessings,

Lottie

[Guest guest]

lottie strange as it may sound, and it does, my onc told me at dx. i had

139% ph+ as well now it.s 00.001% I think you know me and the figures : but yes

i have it in writing I also thought it strange that one could have more than

100% could it be a new calculation they use? lottie hows jimmy doing? and

you? Well fellow cml'ers I hope everyone had a healthy great holiday I wz

inundated with my nieces for the last two weeks since school is out, love them

but

need a break.lol

lov always

aliza yaffa

rochester n.y.

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Thank you for all of the nice welcomes! I may have gotten the

information wrong as all of this is so new to me. I thought he said

I tested about 150% positive and am now down to less than 1% as far

as one of my bone marrow tests went, but all of the terms and blood

levels and such are still new. I do know when I was diagnosed, I

had about 95,000 white blood cells. I didn't even know that was

strange until the surgeon told me I either had leukemia or cancer

and I could not donate my kidney to my husband. I am anxious to

learn more. When I see my doctor again in about three weeks, I will

try to find out more about the percentages. I am now being

monitored every 4 weeks with a blood draw and a visit to the

doctor. I do know he said I was basically in molecular remission??

With all of this CML stuff and kidney tranplant stuff, my brain is

mush these days! This seems like a really nice group and thanks for

letting me join.

Jill

>

> Dear Jill,

> New members are always welcome here. You have a unique story

and I appreciate your using this forum to share it with us. I'm

happy to hear that your husband was able to get his new kidney, even

though it wasn't yours. What a wonderful, loving couple you must be

and to have raised such a generous and loving son is the icing on

the cake. Having CML is a shock to all of us and the majority (99%)

found out because they went to the doctor for something else. I

found mine when I had an attack of GERD. Once your body gets

adjusted to the Gleevec, you may very well get some of your energy

back and be able to perform pretty much what you did before, but you

may continue to be plagued with fatigue. We are all on various

drugs, so our symptoms are not all the same, but most have the same

complaints of fatigue. There is nothing so precious as getting your

life back, even though we have to forego some of the things we did

before.

> I am curious and even ignorant sometimes, and I was wondering

how you could be 150% Ph+. I have been fighting the dragon back for

12 years on many drugs, but never heard the term of having greater

than 100%. Maybe someone can enlighten me about this term and what

it means. Did your doctor mention what your level of remission was?

This is a great topic for discussion with this group.

> Keep us posted on yourself and your husband. Here's wishing

you all the best and welcome to our group. I thought I was

really stupid to ask such dumb questions when I was first diagnosed,

but found out everyone had the same questions on their minds, so we

are open to any questioning.

> Blessings,

> Lottie

>

>

>