Telephone Conference

[Guest guest]

Ah yes, shingles on the right side of my head, in my ear, hair and down my neck.

Not good REALLY not good. My hair was falling out any way from GVHD so I just

shaved my head so I could use the nasty cream version of pepper spray,

Capsacian. Holy wonder of life did that set me on fire. But it did stop the

itching. Burned the nerve endings so they couldn't transmit.

I don't think there has been much I've missed out on.

Sue

bettie grant <bettiejgrant@...> wrote:

I have participated in a telephone conference once before. It was very good.

Won't be able to hear this one, but I understand that there will be a transcript

of all these conferences posted on the Leukemia/Lymphoma website. Somehow I got

on their mailing list (can't remember how! whoops!), so I get notices about the

phone conferences. Will share that info when I get the next one.

Shingles in the sinus; shingles in the ear;

Shingles in the throat; let's give them a cheer! Unh!

Shingles in the nose; shingles in the snot;

I don't want the shingles, but them is what I've got!

Anybody else had to deal with this? Not fun!

Being from the South, I guess shingles is like grits: you can't have just one!

Bettie

MisDX with MCL - Aug. 2002; DX SLL - Oct. 2002; vaccine trial - Dec. 2002,

removed from trial Jan. 2003; Rituxan alone since then: three rounds so far

with one more coming up in the fall. Disease is stable.

[Guest guest]

Dear Tracey,

I listened to the conference and you are terrific. I wrote down which

I thought were good notes but I threw mine away after I read yours.

It was like hearing the conference again. The conference was very

interesting to me. I was diagnosed in June 06(73yrs old) and am on

400 mgs of Gleevec. I have been able to continue working and living

my life even with the side effects of edema, nausau after taking the

pills and bone pain which locks my both hands. My doctor who is quite

informed about all the advances advised me to take calcium which I do

when I think of it. I have osteoporosis and take Fosamax, and 600 mgs

of calcium with vitamin D. I will be more diligent about it and see

if it helps. Either Dr. Mauro or Dr Shah advised taking calcium, so I

am happy my doctor is aware.

Anyway, you did a great job and you have my vote to do it again when

their is another conference.

To all in this group. Thank you for all your support, advise and

love. I wish you all A very Healthy, Happy and Peaceful New Year.

Ceil(New York City)

[Guest guest]

Hi Ceil,

Thanks for your kind words.

All the best to you and your family,

Tracey

>

> Dear Tracey,

>

> I listened to the conference and you are terrific. I wrote down

which

> I thought were good notes but I threw mine away after I read yours.

> It was like hearing the conference again. The conference was very

> interesting to me. I was diagnosed in June 06(73yrs old) and am on

> 400 mgs of Gleevec. I have been able to continue working and living

> my life even with the side effects of edema, nausau after taking

the

> pills and bone pain which locks my both hands. My doctor who is

quite

> informed about all the advances advised me to take calcium which I

do

> when I think of it. I have osteoporosis and take Fosamax, and 600

mgs

> of calcium with vitamin D. I will be more diligent about it and see

> if it helps. Either Dr. Mauro or Dr Shah advised taking calcium, so

I

> am happy my doctor is aware.

> Anyway, you did a great job and you have my vote to do it again

when

> their is another conference.

>

> To all in this group. Thank you for all your support, advise and

> love. I wish you all A very Healthy, Happy and Peaceful New Year.

>

> Ceil(New York City)

>