Re: - newbie

[Guest guest]

HI ,

I haven't posted in a while but had seen your email and responses. I just

wanted to share my experience with the group. I was diagnosed in 2003, just

went for my yearly checkup and found out I had CML. I live in the Cayman

Islands and did some research on Leukeima for the doctors here cannot treat it

or did not know what type of Leukeima I had. I myself found MD in

Houston Texas. My insurance here has been great and I have been very very lucky

in which the doctors there are superb and I haven't had a bad experience yet. I

have been on Gleevec, 800mg since...when first starting gleevec i had every

reaction to it, name it I had it...that is when i found this group. At the time

everyone was very helpful and kept me going through the bad days, Cheryl (who is

from Canada and has a friend who lives here in the Cayman Islands) and Zavie

especially. I made friends in which 2 ( and Jody) actually visited me here

on a cruise ship!!!! which was great for we don't have

any one here with CML!!! As far as the " bickering " I have seen it and just

chose to ignore it. Anywhere in the world you will have opinions and i believe

that is what this is " everyone's opinions " . At the beginning of being diagnosed

I had so many questions and fears in which this group did answer. Your doctor

is there for you but at times you needed an answer immediately or just to find

out what everyone or someone is going through. We are all different in our

dealings and opinions with the disease and we are all effected differently by

the medications. Some have had bad experiences with doctors and ONC and some

good. In Cayman I jsut get my blood checked every 4-6 weeks by my family doctor

and go for my check ups to houston every 6 months now (use to go every 3 months

the first year), so i don't really depend on an ONC. Some have had terrible

experiences with their BMB and BMA others nothing, again it depends on where u

go!!!

Don't be scared, it does get beter as time goes on!!! Where do u get your

treatment at? Are they going to start you on Gleevec or any other trial.

This group has helped me through many times and still do when i need a

question asked if anyone has gone through something I have gone through!!!

CML isn't a death sentence anymore and I am sure with all the great trials and

medications coming out they will have a cure soon, and if not a cure it will be

very controllable!!!

Take care and please post again or join Zavie's chat (he is a riot you

know!!!!))

Warm wishes from the Cayman Islands

Penny

michelle_thompson68 <michelle_thompson68@...> wrote:

>

> Hey Group:

>

> I haven't been online as I should have. . . trying to enjoy my

gold life. Now I have over 278 emails, not to add the CML groups

emails which carry up to 25 posts each.

>

> Newbies, bear with us. . . I remember joining the other group

just as a difference of opinions was arising and out of that. . .

emerged this group. I almost left the group, but now I am a member

of both. You, too, must read the posts and ignore the unnecessary as

I did; don't leave the group. Though we are different and

opinionated, there's a wealth of information available to you from

both groups. I'm glad that I stayed. . . hope you will also.

>

> Take care, I have all you guys in my prayers.

>

>

>

>

> " K "

> " I AIN'T FINISHED YET " !!!

>

>

>

Hello `K'

Thankyou for your reply. I am a little surprised by your message

suggesting to me not to leave the group because of the unnecessary

posts – and sharing with me how you were about to leave. I have read

quite a few posts and yes I have to admit I was saddened by the

bickering between CMLers and especially after reading your message I

looked into it a bit more, curious as to why you would say that to

me – As we all need the support here of one another and there will

be times of different opinions, but there is no need to have to have

the final word on a subject. It seemed to get a bit heated over the

Having blind faith in your doctor… I tell you I so much am leaning

on my doctor at the moment and reading what you wrote Tracey(and you

seem to have a very strong opinion from what I could pick up in the

posts)it shook me up a bit, as at the moment I am very scared. And

it seemed like a rift was happening between the group because of

some strong responses that I read in the posts. I am not too sure at

this stage that I want to be come a part of this group.

I do thankyou for the warm welcoming I received from some of you A

big thanks to Zavie for inviting me to the chat

Thankyou Tracey for the chat times, I will look into it as I work

odd hours.

Dx Jan 2006

>