Yes, it is our life

[Guest guest]

Chonette, I pray the "adventure" will have a good outcome for you. You're absolutely right that each of us deals with this disease in his or her own way and that has to be respected. I don't think meant any disrepect in his message to Jane either. Anyone who knows will know that he cannot be accused of lack of compassion. He's the one who got this group going! He was simply stating what he has observed and experienced, and the fact that all of us are able to share our experiences here and learn from each other is what makes this group so helpful.

It's true that the odds of surviving a bone marrow transplant and having decent quality of life afterwards are not good. But when a person has pretty well reached the end of the chemo rope, as I had, there isn't much to lose. The results of the allo transplant have been so dramatic in my case (and for a dozen or so other people I've met in different support groups) that I had to speak up and make the suggestion at least. I have a pet theory, which is that transplant is best done before the body has been too much weakened by the disease and its treatments. Maybe the transplant survival statistics would be better if it were not always done as a last resort. However, I fully understand most doctors' reservations about this. After all, they are bound to "first do no harm."

Sybil Whitman, 52

Dx. Oct. 2003, CHOP x 8, R-CVP x 6, auto SCT April 2006, reduced intensity allo BMT (unrelated donor), Dec. 2006.

[Guest guest]

Sybil,

The statistics from various BMT facilities vary a

little but last I heard the chances of long term

survival with BMT are about 70%. IMHO that's a whole

lot better than zero without it. I'm 8 years out,

June 9, 2000 I had my infusion of my brothers cells.

Yes I have GVHD, but it's managable. My quality of

life is very good. I'm working full time and doing

almost everything I did before I was diagnosed. One

exception I'm not training horses any more. But at my

age I would hope I would have sense enough not to be

getting on young rank knuckleheads anyway. Life is

definitely different but I call it the new normal and

it's not bad at all. I get upset occasionally because

it's quite difficult to suck sympathy out of people

when you don't look or act like you've ever been sick.

Once in a while it would be nice to have someone give

me a hand hauling hay or lifting bags of grain. It

takes me longer to get things done but I'm still

vertical and I'm still doing it.

I absolutely agree BMT should be done at first

remission. I have a hunch that the decision is also

driven by insurance companies, not just the Dr's

reservations.

Campath put me into remission after clorambucil,

fludarabine, and CHOP had failed. IMHO treatment

should start with the big guns. I'm the kind of person

who believes in hitting problems head on using the

biggest guns available, getting rid of the problem and

getting on with life. Had I been given a say in my

treatment instead of being forced to follow standard

protocol I would have STARTED with the Campath

Clinical Trial. After the first three drug treatments

I was worse off, a year of my life was wasted and CHOP

almost killed me. Six weeks of Campath and I had

complete response. Hind sight is always 20/20 but I

truly believe the patient should have more voice in

their course of treatment.

My father drove me 3 times a week to Stanford for the

Campath treatments. Watching me deal with the side

effects was what made him decide to refuse treatment

for his renal cell. Age was a factor also, he had

just turned 80 and was not willing to go through chemo

to extend his life a few more months. With his

permission I did the research on available treatments

and brought the information back for him to review.

Best case scenario was not very hopeful so even though

there were options his decision was to decline

treatment. I was so angry I could have spit nails

because he wouldn't even try. I argued at first, but

all that did was upset both of us. When I stopped

trying to force my opinions on him we had a much

better relationship. I cherish every minute I had

with him it would have been much less pleasant if I

had not respected his decision.

is right. Attitude is a very important factor of

survival. That said, every patient has his or her own

personal level of tolerance, and reasons to fight. If

I had not had significant reasons to live it would

have been very easy to give up. There comes a time

when enough is enough. Someday I may hit that wall,

if I do I hope the people around me will respect my

decision.

Sue

--- Sybil Whitman <hcouture@...> wrote:

> Chonette, I pray the " adventure " will have a good

> outcome for you. You're absolutely right that each

> of us deals with this disease in his or her own way

> and that has to be respected. I don't think

> meant any disrepect in his message to Jane either.

> Anyone who knows will know that he cannot be

> accused of lack of compassion. He's the one who got

> this group going! He was simply stating what he has

> observed and experienced, and the fact that all of

> us are able to share our experiences here and learn

> from each other is what makes this group so helpful.

>

> It's true that the odds of surviving a bone marrow

> transplant and having decent quality of life

> afterwards are not good. But when a person has

> pretty well reached the end of the chemo rope, as I

> had, there isn't much to lose. The results of the

> allo transplant have been so dramatic in my case

> (and for a dozen or so other people I've met in

> different support groups) that I had to speak up and

> make the suggestion at least. I have a pet theory,

> which is that transplant is best done before the

> body has been too much weakened by the disease and

> its treatments. Maybe the transplant survival

> statistics would be better if it were not always

> done as a last resort. However, I fully understand

> most doctors' reservations about this. After all,

> they are bound to " first do no harm. "

>

> Sybil Whitman, 52

> Dx. Oct. 2003, CHOP x 8, R-CVP x 6, auto SCT April

> 2006, reduced intensity allo BMT (unrelated donor),

> Dec. 2006.

>

[Guest guest]

Sybil,

I had great respect for and what he says, I should say I am one of his most devoted admirers, my post was mainly in reply to Sue Bunti and her father wishes.

regards

Chonette