Re: newbee that needs someone to talk to

[Guest guest]

I can understand your frustration. The first thing the doctor told me when I

was diagnosed with CML is that it could not be passed on to your children.

The second thing he told me was that it wasn't caused by anything I have done.

I have gone through a few phases, but now have calmed down. I listened to a

teleconference the other day with eight hundred other people. The doctor that

were putting on the conference were specialist from Texas. One of the things

I got out of the conference was that most people can live their natural life

span as long as they are taking there medications. I am not a practitioner,

but just a person with CML.

Maybe you should go to a different doctor. A second opinion really could

hurt.

Anyway please don't be too afraid. Try to take it one day at a time.

[Guest guest]

Hi Muse,

Calm yourself, your at the right place for answers. CML does not mean the

end, and you have a whole lot of good people to talk to here. If you need to

chat I use MSN, and . My MSN is terrydailey@..., and my

is terrydailey1@....

Just ask whatever questions you have and I or someone on the list will be

happy to help answer them as best we can. I have had CML since April of 04

Terry

On 10/21/06, muse_dwr <muse_dwr@...> wrote:

>

> My name is Muse and I hope there is someone that can help me and support

> me. I just found out that I quite possibly have the new to me CML. The

> doctor would tell me nothing, but the technician told me to get a book

> called CML after she did the bone graph and bone marrow biopsy.

> Right now I'm sad and mad. Sad for myself because I have some decisions

> to make and mad with the specialist whom I was referred to who did not tell

> me anything.... would not tell me anything with all of my questioning.

>

> I need help. I'm sorry to meet people like this, but right now I don't

> have a choice.

>

> Thank you and bless you for having some mercy on me.

>

>

> Ms. Muse

> " I believe that unarmed truth and unconditional love will have final word

> in reality. This is why right, temporarily defeated, is stronger than evil

> triumphant. "

> Luther King, Jr.

>

>

[Guest guest]

Hi, Muse. I'm . I was diagnosed with CML in May 2005. It

sounds like your encounter with your doctor was extremely

frustrating. Was it your general practitioner? Or was it an

oncologist/hematologist to whom you'd been referred. If it was your

GP, maybe he just didn't want to say too much because he doesn't

know that much. My GP is the one who first saw that I had a high

white blood cell count -- in the ordinary course of a regular blood

work-up. He didn't say too much, but did mention that I could

possibly have leukemia. So, he referred me to an

oncologist/hematologist, who did the tests necessary to determine

that I had CML. Either way, doctors should be as forthcoming and

comforting as possible. I'm sorry you had a negative first

experience.

It's understandable that you feel sad. We all felt sad and also

scared when we first got the news. But you should know that there

are amazing drugs now that can give most CML patients a pretty

normal life for a very long time -- and even more new drugs on the

horizon. If you do have CML, you got it at the best time you could

have gotten it. I know there's never a good time, but you know what

I mean.

Anyway, if you have questions, you can post them here. There are

also other discussion boards, which are largely frequented by

similar groups of patients and caregivers (although I'm sure there's

not total overlap). There's the Leukemia and Lymphoma Society

boards, the Google Groups board (cmlhope.com), the Asian group and

newcmldrug.com. Maybe someone else can provide links to the LLS and

Asian sites?

Best wishes to you.

(Dov)

>

> My name is Muse and I hope there is someone that can help me and

support me. I just found out that I quite possibly have the new to

me CML. The doctor would tell me nothing, but the technician told

me to get a book called CML after she did the bone graph and bone

marrow biopsy.

> Right now I'm sad and mad. Sad for myself because I have some

decisions to make and mad with the specialist whom I was referred to

who did not tell me anything.... would not tell me anything with all

of my questioning.

>

> I need help. I'm sorry to meet people like this, but right now I

don't have a choice.

>

> Thank you and bless you for having some mercy on me.

>

>

> Ms. Muse

> " I believe that unarmed truth and unconditional love will have

final word in reality. This is why right, temporarily defeated, is

stronger than evil triumphant. "

> Luther King, Jr.

>

>

[Guest guest]

Do you know of other teleconferences on CML? I'm newly diagnosed,

Thanks,

>

> I can understand your frustration. The first thing the doctor told

me when I

> was diagnosed with CML is that it could not be passed on to your

children.

> The second thing he told me was that it wasn't caused by anything

I have done.

> I have gone through a few phases, but now have calmed down. I

listened to a

> teleconference the other day with eight hundred other people. The

doctor that

> were putting on the conference were specialist from Texas. One of

the things

> I got out of the conference was that most people can live their

natural life

> span as long as they are taking there medications. I am not a

practitioner,

> but just a person with CML.

> Maybe you should go to a different doctor. A second opinion really

could

> hurt.

> Anyway please don't be too afraid. Try to take it one day at a

time.

>

>

>

>

[Guest guest]

If you go to the Lymphoma Leukemia Society web page they will list the next

teleconference. It's a pretty neat site. There is also a message board.

_http://www.leukemia-lymphoma.org/hm_lls_

(http://www.leukemia-lymphoma.org/hm_lls)

[Guest guest]

This is probably a better link to the teleconferences

_http://www.leukemia-lymphoma.org/all_page?item_id=6746_

(http://www.leukemia-lymphoma.org/all_page?item_id=6746)

[Guest guest]

Hi, Muse. Did you wind up at the hem/onc because of high white

blood cell counts? Not all hem/onc's are necessarily knowledgeable

about CML, so maybe this doctor is one of those. Who knows?

Let me tell you what I know about CML medications. (If I make any

errors, please, anyone, feel free to jump in and correct what I've

said.)

First, there's Gleevec. It's been around for only about 5 or 6

years. It's not a cure for CML, but it works with most patients to

keep the disease under control. For some patients who are resistant

to Gleevec (i.e., it doesn't work for them), or intolerant of it

(i.e., it has terrible side effects), there's a new medication

called Sprycel. There are also new ones being worked on now but

they haven't been approved by the FDA yet. None of these

medications are cures, but they help us live with our CML under

control.

Most people seem to lead fairly normal lives on Gleevec. For me,

it's worked very well -- it's put my CML into full molecular

remission -- but I have a lot of bad side effects that have put me

on disability from my job (I'm a lawyer). They are mostly extreme

fatigue, short term memory loss and other cognitive difficulties

(inability to focus, concentrate like I used to) I also have a few

physical side effects, but they not too bad, except that I

occasionally have bone pain. It doesn't seem that there are many of

us who are on disability -- a few, but most people seem to continue

working. Some people do gain weight on Gleevec. Others lose

weight. I haven' t gained or lost weight.

Some people do experience painful side effects on Gleevec. The most

painful thing about having CML, though, is probably the bone marrow

aspirations or bone marrow biopsies (I'm not even sure what the

difference is, or if there is one) that we have to get from time to

time. That involves a big needle in your hip bone, which the doc

uses to take a bone marrow sample. That's how they initially

determine whether you have the marker for CML -- something called

the Philadelphia chromosome, which is a chromosomal abnormality in

which a piece of chromosomes 9 and 22 break off and switch places.

As I said, none of these meds is a cure. The only cure for CML is a

bone marrow transplant. Some people are able to find matches, some

aren't. But bone marrow transplants are risky, and the older you

are the riskier they get. Depending on a patient's age, there can

be a significant chance that she doesn't survive more than a year or

so after a transplant. It seems to me that only younger people and

people who are completely resistant to all the medications (they

have no other option) get transplants.

If you are not a candidate for a transplant and Gleevec works for

you, then you need to take it. My understanding it that, once upon

a time, people who found out they had CML had an average remaining

life of about 3 to 5 years. The disease would move pretty rapidly

from chronic phase to acclerated phase and finally to blast phase,

which the patient didn't survive. The new medications have given

the vast majority of us a new chance for a long and fairly normal

life. They are incredibly expensive, but the companies that make

them have patient assistance programs for CMLers without insurance.

I have insurance, so I don't know how that works.

I hope I have answered some of your questions. Please feel free to

ask away . . . Don't feel shy about asking questions on the

boards -- there are a lot of people who are much more knowledgeable

than I am, and you want to reach as many of us as possible.

Everyone is compassionate and kind and knows exactly what you may be

going through.

Best of luck to you.

Warm regards.

>

> Hi ,

> You are the first one to write me. I am so glad.

>

> To answer your question, that is the hematologist/oncologist that

was not forthcoming to it. Her technician told me or she told me to

read the CML book. I go to see the hematologist again on the 30th.

>

> The only question that I have now is WHAT IF I DON'T TAKE ANY OF

THE MEDICATIONS? and what are the complications with this disease,

if I don't take the meds? Is there pain somewhere?

>

> I cannot stand pain, for your info, nor can I stand to be any

larger from the meds. I already have numerous other ailments. I'm

in a mood now! that I can't help, even though usually people call me

a wise woman. Please look over my mode, but I do want my questions

answered please.

>

> thanks so much for your compassion.

>

>

>

>

> Ms. Muse

> " I believe that unarmed truth and unconditional love will have

final word in reality. This is why right, temporarily defeated, is

stronger than evil triumphant. "

> Luther King, Jr.

>

>

[Guest guest]

thank you for the site.

Ms. Muse

" I believe that unarmed truth and unconditional love will have final word in

reality. This is why right, temporarily defeated, is stronger than evil

triumphant. "

Luther King, Jr.