Re: Barb Neddo

[Guest guest]

Hi, Barb Stanley. Thanks for writing back. Tom doesn't have the fatigue

except when it comes to the physical endurance required for sports. No

hockey or soccer this year. Tom is having his BMT @ Fairview Medical

Center in Minneapolis. Dr. McMillan (of Fairview) told me that Fairview

does " about 40 " BMT's for CML patients a year. Tom has a 12/12 match

for his MUD transplant. We are very hopeful. I hope you are right about

May 4, 2005 being lucky. Enjoy the heat in Arizona! We actually got to

60 today and the ice on the river in front of our house is finally

starting to break up. Spring is on the way!

Barb Neddo, Eagle River, WI,

Mom to Tom, 16, dx CML 8/04

MUD BMT scheduled for 05/04/05

On Apr 3, 2005, at 6:37 PM, Barb Stanley wrote:

> Hi Barb

> I have constant 'flushing' of the face.  The cheeks feel extremely

> hot at the same time. It is especially intense after a hot shower.  I

> also am cold ALL THE TIME and I live in Arizona!  I kill my family

> when I need heat!  So I got a lot of sweats I wear and blankets all

> the time. I do believe it is a side effect of gleevec as  it showed up

> immediately upon beginning my treatment. I am taking 400 Mg a day -

> since June of 02.  I do find that there are certainly a cyclic nature

> to the side effects too. The only ones that are constant are the face

> flushing, being cold, and constant fatigue.  The others, and I have

> them all listed on the cmlsupport.com website.  But they cycle in and

> out at different times.  I see Tom is scheduled for  his BMT on my

> third anniversary of diagnosis - may it mean the cure for him.  Where

> are you going?

> Barb in AZ

>

>

>

>   >Tammy:

>   >

>   >Hi. My sixteen-year-old son often has redness of the face and is

> very

>   >pale. He is also cold a lot. He likes the heat turned up to the

> point

>   >where we can't stand it so we got him his own heater for his

> room.  He

>   >also wears a sweatshirt in the house most of the time. I think

> this is

>   >either a side effect of the Gleevec or from CML because he didn't

> have

>   >this before. He is on 600 mg Gleevec daily.

>   >

>   >Barb Neddo,

>   >Mom to Tom 16, dx 8/04,

>   >BMT scheduled 5/04/05

>   > >

>   > >

>

>

>