Re: Possible causes of CML

[Guest guest]

Hi Donna,

Honestly I am not sure a BMB would tell them anymore info than what they can

get doing regular bloodwork? I am not a doctor, or play on on TV..hehehe,

but personally if they never did another BMB on me I would not be unhappy. I

am glad to hear the VA decided in Jim's favor, and I hope that helps you

guys out. Take care,

Terry

On 10/12/06, dabberdolly <donnac1948@...> wrote:

>

> Talking about possible causes of CML no one knows for sure why some

> people get it and others don't. Jim's onc told us of possible causes

> also. We did go back and filed a claim with the VA because Jim worked

> on an aircraft carrier in the paint locker where he worked with a lot

> of paint and solvents. Just one month ago the VA agreed with us and

> said they could not say that this didn't cause his CML and now they

> are going to award him some compensation. We have been getting his

> meds through the VA so we have been very fortunate - otherwise we

> would not be able to afford them.

> Jim had a major heart attack in Nov. of 93 - 6 years before he was dx

> with CML. Since then his heart has slowly gotten worse. Don't know

> if gleevec has anything to do with it or not. He is on a tremendous

> amount of meds for his heart. They say there is nothing more they can

> do for him except keep him on meds.

> The one side affect Jim had from Interferon has burned his nerve

> endings in his feet. He has pain 24//7. He is on morphine because of

> that. I haven't read where anyone else has had this severe of a

> problem. The onc and his pain management dr. both say it is from the

> interferon.

> Jim takes very little gleevec now. Only 100 mg a day for two weeks

> and then off for 2 weeks. His last 2 FISH tests have come back

> positive but very low. The onc won't do a BMB at this time. That

> kind of bothers me. Should we insist on one????

>

> Donna, wife of Jim dxd 6/99

>

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>

>

[Guest guest]

At 07:54 AM 10/14/06 -0500, you wrote:

>Hi Donna,

>

>Honestly I am not sure a BMB would tell them anymore info than what they can

>get doing regular bloodwork? I am not a doctor, or play on on TV..hehehe,

>but personally if they never did another BMB on me I would not be unhappy. I

>am glad to hear the VA decided in Jim's favor, and I hope that helps you

>guys out. Take care,

The CML specialists do recommend periodic BMBs......and yes, it does give

information

that none of the blood testing can. They look for fibrosis in the marrow,

the cellularity

of the marrow, and with the cyto testing they are looking for other

chromosomal changes

in the 'normal' (as in not ph+) cells.

Even with a great response to Gleevec, like PCRU or very low levels, you

should have a

BMB once a year.....and then maybe once every 2 years.

Donna, I lost your post.....why is Jim on such a low dose of Gleevec?

Yes, I think a BMB is important to have the full picture (that what Dr.

Druker always says).

C.