Re: BMT Operation(need help).

[Guest guest]

I don't know a lot Jamal but I would be very concerned with your daughter's

care. Your daughter should be on gleevec or a similar medication and at her age

I don't know that a BMT would be a great idea. It is a scary process for a

adult with about a 50% survival rate from what I understand. Gleevec is a

medication that people with CML take once daily which keeps our WBC low and

keeps the leukemia for most from returning. There are side effects for many

people but it keeps you alive. It is a drug that you are on forever but it

circumvents a BMT. Please seek a second opinion if you can.

Hang in there, best of luck!!!

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[ ] BMT Operation(need help).

Dear all,

I am new to the group, three weaks ago i started blood and bone

marrow test for my kid, zina 5 years old, after a CBC test where

here WBC were 80,000.

The doctors first thought it was JMML and after the Cromosom test it

was positive and the doctors said it si CML.

She took (rosophine for 10 dayes) and now is taking Zinat

antibiotech.

Also she takes a medicine to lower down her WBC which reached

150,000.

After 7 Capsules they were 44,000two days a go.

We made an HLA test and found that her brother (7 years) is

100% Ok.

We are to start a new clinic at Hadasa hospital (Jerusalem) starting

thursday to start the BMT operation.

I need help in detailing me the BMT opeartion from time,phase and

steps expected, Success percentage and the left unsuccess one, where

does it go, and how can be avoided.

I am afraid of this operation for not knowing details about it.

Your advice and help is appreciated.

Jamal Hurani

[Guest guest]

Jamal, your kid is very very young and the HLA test result is %100. So, i think

it is a better option to make transplantation. It might not be a good idea to

use glivec to a child. Glivec is the first option for the adults but this is a

different situation, it can couse very heavy side effects, especially for a

child. But also im not a doctor and i have never heard CML in children before.

I'm just telling my opinions. So you have to talk with too many doctors before

making your decision. I know it is a very hard situation for you but you have to

be strong to do the right thing for your child. I believe and feel your kid will

be ok at the end, whatever you decide to do.

Best wishes

Yusuf

dx march 2006

jamalhurani <jamalhurani@...> wrote:

Dear all,

I am new to the group, three weaks ago i started blood and bone

marrow test for my kid, zina 5 years old, after a CBC test where

here WBC were 80,000.

The doctors first thought it was JMML and after the Cromosom test it

was positive and the doctors said it si CML.

She took (rosophine for 10 dayes) and now is taking Zinat

antibiotech.

Also she takes a medicine to lower down her WBC which reached

150,000.

After 7 Capsules they were 44,000two days a go.

We made an HLA test and found that her brother (7 years) is

100% Ok.

We are to start a new clinic at Hadasa hospital (Jerusalem) starting

thursday to start the BMT operation.

I need help in detailing me the BMT opeartion from time,phase and

steps expected, Success percentage and the left unsuccess one, where

does it go, and how can be avoided.

I am afraid of this operation for not knowing details about it.

Your advice and help is appreciated.

Jamal Hurani

---------------------------------

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[Guest guest]

At 11:07 AM 8/29/06 +0000, you wrote:

>She took (rosophine for 10 dayes) and now is taking Zinat

>antibiotech.

>Also she takes a medicine to lower down her WBC which reached

>150,000.

>After 7 Capsules they were 44,000two days a go.

>We made an HLA test and found that her brother (7 years) is

>100% Ok.

>We are to start a new clinic at Hadasa hospital (Jerusalem) starting

>thursday to start the BMT operation.

>I need help in detailing me the BMT opeartion from time,phase and

>steps expected, Success percentage and the left unsuccess one, where

>does it go, and how can be avoided.

>I am afraid of this operation for not knowing details about it.

>Your advice and help is appreciated.

>Jamal Hurani

Dear Jamal,

I am not sure what drugs they have had your daughter on so far....maybe it

was hydroxyurea to lower her white count (also called hydrea)? Many

children who do go on to do a BMT will be treated first with Gleevec/Glivec

for a period of time, to kill off the leukemia cells before having the

transplant.

The best survival rate with a transplant is for a young person (under age

20) with a matched sibling donor....so she fits that category.....but there

is still some mortality and complications with a transplant. So you need

for the BMT center to go over all of that with you, and to discuss the

other option of treating CML long term with Gleevec/Glivec.

I am going to tell you of 2 other website to do to.

First go to www.newcmldrug.com and click on Childhood CML. This is not a

very active list but if you post a question, you may get some responses.

There are several people on this list who's children have had

BMTs........also they have website diaries where you can read all about the

BMT process.

Then click on CML Discussion from the above homepage.........and at the top

of that page is a list of links to other support groups. I would suggest

that you click on #1...the Asian Support Group........I think they will

have some information to share with you and their is an aunt of a little

girl (I think her name is Marisa)........that recently had a BMT with her

younger sister as the donor. I think she has a diary that you can read

about her BMT.

With CML you do not need to make an urgent decision..........your daughter

could first be treated with Gleevec/Glivec until you get all the

information you want to make your decision.

Best wishes to your family,

C.