Re: question for Judy T.

[Guest guest]

At 06:03 PM 3/14/05 +1100, Judy wrote:

> In 1993 I had a bmt using my brother's marrow. I relapsed in November,

> 2003, but due to a hospital muck up, this was not discovered until July 2004.

Hi Judy,

I am glad to read that you are doing so well now.....and that Gleevec is

successfully getting you back to donor marrow without the risk of GVHD.

Sounds like you will have a Zavie # soon.

I am curious about the 10 years between having the BMT and relapsing. Did

you have problems following your BMT? and what was your quality of life

like? Do you think that anything in particular, such as high stress,

triggered your relapse? Did you have some GVHD and therefore some graft vs.

leukemia effect?....which I think they now believe is what makes a BMT

successful when it is. Thanks for sharing your journey with us.

Maui Nanc

[Guest guest]

> > I am curious about the 10 years between having the BMT and

relapsing. Did

> you have problems following your BMT? and what was your quality of

life

> like? Do you think that anything in particular, such as high

stress,

> triggered your relapse? Did you have some GVHD and therefore some

graft vs.

> leukemia effect?....which I think they now believe is what makes a

BMT

> successful when it is. Thanks for sharing your journey with us.

>

> Maui Nanc

I returned to full time work as a teacher about 18 months after the

transplant. I had some immune system problems and was treated with

intragam for about 8 years, this was eventually stopped when all of

my counts returned to normal. i had gvhd of the gut, but never had

any skin gvhd. i also had signs of it confirmed in my mouth and in

my eyes. I also had some signs of it in my liver, but these were

very mild. i was treated with prednisolone for about 18 months

then when everything settled down this was stopped. i had on going

lungs problems which made me more susceptable to chest infections,

and there was some discussion about my continuing teaching, but i am

a determined person and was determined to return to my life before

the transplant. i have 4 children and have helped my husband with

the book work for his business since he father died. I work hard and

often late into the night, but really enjoyed what i did. About 2

years ago, my husband went through a period of time when he began to

question his life and wasn't sure it was what he wanted. This

included his marriage to me and his children, I guess you could call

it a mid life crisis. it upset me greatly, as i had no idea he felt

like this. i lived in a dreamworld where everything was rosy, I

didn't see the signs of his depression. After sometime, he realised

that what we had was special, and eventually decided to continue

with our marriage, I tell you this because i believe that this was

in part to blame for my relapse. I do not blame him, i blame my way

of handling his crisis. I see a therapist now and have dealt with

the hurt i felt, but at the time it consumed me. did this cause my

relapse, who knows, it will not make it go away, but i do recognise

this as a very stressful time in my life and it may have triggered

the relapse. The other theory is, they missed a few cells when they

bombarded me with chemo before the transplant, and although I had

some gvhd, maybe not enough. Also maybe the match with my brother

was too good. Who knows, it is really not of any value to me now to

try to find a reason. It happened, but i guess for the sake of

others it is worth mentioning. to relapse after 10 years is quite

rare, my understanding is that if you are going to relapse, it

happens fairly soon after transplant. my doctor was really shocked

to find i had relapsed. It was completely unexpected. It just

shows you, you need to be vigilant in having checkups and following

through to get results. for the first 7 years past transplant i had

bmb's then after that just a yearly blood test which checked the dna

of my marrow, and it was always fully male, so it was only the last

one done in november 2003 that showed the beginning of the relapse,

if it had been picked up then, I certainly wouldn't have had the

high numbers of ph+ cells in my marrow. Whether beginning treatment

any earlier would have changed the outcome will never be known, and

i choose not to dwell on this. My transplant was very successful

for 10 years, and i am very grateful for that. I led a normal life

and would consider myself as healthy and energetic as before the

transplant. Now I feel well again and am regaining confidence in

life again, so whether i can say I am cured again, or whether i now

live on gleevec, time will tell, but i know now I have sometime

again to enjoy life and spend time with my husband and children.

Sorry, you touched on a nerve, I didn't mean to write so much, but

hope i have given you some insight into how i relapsed and what my

life has been like.

Judy