New Members

[Guest guest]

I would like to welcome all new members, especially my Genie. We have been

corresponding with each other privately for some time and in April, we had the

good fortune to meet in person. I realize that some CML patients have never met

other CML patients, unless you happen to meet in the oncology waiting room. At

my doctor's we don't discuss what we are in there for and I respect their

privacy by not asking. To actually meet someone with CML is such a bonus to be

able to put a real face on your relationship. Meeting and talking with Genie,

the time went by all too quickly. Having lived in New England, the part of the

country she is from, we were able to talk about places we both knew about, there

was never a loss for words. This is my way of introducing Genie. I was very

pleased when she told me she was joining our group. I think she will find that

we are not stiff necks, but very friendly and eager to share our things we have

in common and the uncommon, as well.

Don't worry about your bouncing PCR's Genie, that is quite common and if you

are in a good place, delight in it, there are some of us who have not been able

to reach that goal, but we don't give up. You just have to speak to someone

like Bobby, and she can tell you what tough times really are, but she is always

the first one to prop you up and the last one to leave the party, especially if

there is still Vodka on the table. It's o.k. for me to say that, she will be

the first to laugh. One of the most loyal friends I have ever met or had.

Thanks for the good times Bobby, I'm raising my glass of Vodka to you. LOL.

Please don't get the impression that we are drinkers, it's a private joke and we

tell each other that when we have something to celebrate with our cyber glass of

Vodka. I don't know if I have ever had a drink of Vodka, maybe years ago, but I

have no more memory of it and that's a good thing, I might want to drink it.

LOL.

Well, I'm off to get my 7th crown (not Crowne Royale, either), so maybe my

smile will be a little brighter and certainly more expensive. LOL.

G'day all and again, welcome, Genie.

xoxoxox

Lottie

[Guest guest]

Gleevec put me in remission in about a month not sure why or how, but so far

besides the side effects I have I am a poster child for the drug.

Terry

On Sat, Jul 5, 2008 at 3:30 PM, Lottie Duthu <lotajam@...> wrote:

> 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

>

>