A few words for Jane R.

[Guest guest]

I've been keeping quiet up to now, and maybe I've missed something in your recent posts, but I have to ask: Why can't you do a bone marrow transplant? Are you sure it's not a possibility? I remember reading in one of your posts that you think you would not survive it, that the odds are poor, and that it demands abject obedience to doctors. Not so--at least not in my case. The whole tandem transplant (auto SCT and allo BMT 7 months later) was done on an outpatient basis. I never felt I was being ordered around. I did have to take the medications prescribed on the protocol. I got through the whole thing quite well and my lymphoma (which wasn't exactly CLL but a unique form that ended up acting like multiple myeloma, a disease that has much the same prognosis as yours) is now in complete remission and may even be cured.

I had just turned 48 when diagnosed. I'm now going on 53. Admittedly, I was very lucky in that a matched unrelated bone marrow donor was found for me, against all odds, and that person must have been an extremely good match because I've had little or no GvHD. I stopped taking the anti-rejection drug (prograf) six months after the allo BMT and haven't looked back since.

So since you're going to die anyway, why not inquire about a BMT and get a donor registry search done? That was the way I looked at it. At 47, you're very young to give up without a good fight. I do hope you haven't had to rule it out for financial reasons. I know that can be a big problem in the U.S.

Sybil Whitman, 52, NB, Canada

Dx. Oct. 2003 (supposedly indolent NHL, diagnosed first as MCL, then CLL, then LPL, then unclassified), CHOP x 8, R-CVP x 6, auto SCT April 2006, reduced intensity allo BMT Dec. 2006, doing fine and working full time.

[Guest guest]

Sybil,

Thanks for your information. I'm so glad you had successful treatment!

It is my DH who has CLL. He also has diabetes. He is age 61 on Wednesday.

His extensive blood and genetics tests have mixed results, some

positive, some negative. The results reflect his likelihood of

progressing slowly or rapidly. He's even gone to England when one

important test was offered there by a specialist we met in Ohio at at

CLL/SLL conference. He offered to do the very very expensive test at

his clinic for $100 US. We enjoyed the side trip in England on our

return leg after spending a month with our son and his family in

Sicily.

I follow the research and news from approx 2,000 members of an

education and support group. One couple have given the 10 years of

their retirement to research, and an excellent web site. It is called

CLL Topics. is the scientist who " translated " medical research

and articles into terms most can understand. She is well respected in

scientific and CLL community.

Her husband, P.C. elected to undergo a transplant recently. The

transplant grafted well and he was getting ready to return home from

the university medical center. A cough escalated into a crisis

situation. He died within a week. Now, these people knew more about

the disease and the treatment options than anyone else except the top

researchers/doctors. There is no telling what the outcome of

transplants will be. Since then I read of 2 more on our list who

recently died following transplants, stem cell or bone marrow.

Terry's specialists still don't advise him to be treated yet nor have

a transplant. He sees his main specialist in Seattle area and also

Dr. Jon Byrd at Ohio State University.

Thanks again,

On 8/1/08, Sybil Whitman <hcouture@...> wrote:

> I've been keeping quiet up to now, and maybe I've missed something in your

> recent posts, but I have to ask: Why can't you do a bone marrow transplant?

> Are you sure it's not a possibility? I remember reading in one of your posts

> that you think you would not survive it, that the odds are poor, and that it

> demands abject obedience to doctors. Not so--at least not in my case. The

> whole tandem transplant (auto SCT and allo BMT 7 months later) was done on

> an outpatient basis. I never felt I was being ordered around. I did have to

> take the medications prescribed on the protocol. I got through the whole

> thing quite well and my lymphoma (which wasn't exactly CLL but a unique form

> that ended up acting like multiple myeloma, a disease that has much the same

> prognosis as yours) is now in complete remission and may even be cured.

>

> I had just turned 48 when diagnosed. I'm now going on 53. Admittedly, I was

> very lucky in that a matched unrelated bone marrow donor was found for me,

> against all odds, and that person must have been an extremely good match

> because I've had little or no GvHD. I stopped taking the anti-rejection drug

> (prograf) six months after the allo BMT and haven't looked back since.

>

> So since you're going to die anyway, why not inquire about a BMT and get a

> donor registry search done? That was the way I looked at it. At 47, you're

> very young to give up without a good fight. I do hope you haven't had to

> rule it out for financial reasons. I know that can be a big problem in the

> U.S.

>

> Sybil Whitman, 52, NB, Canada

> Dx. Oct. 2003 (supposedly indolent NHL, diagnosed first as MCL, then CLL,

> then LPL, then unclassified), CHOP x 8, R-CVP x 6, auto SCT April 2006,

> reduced intensity allo BMT Dec. 2006, doing fine and working full time.

>

>

[Guest guest]

Sybil,

Thanks for your post, I never asked or consider a SCT myself because of my age (I am 63), but it turned out, age was not the important factor but how healthy we were as a whole so I agreed to see the transplant consultant and he felt I was suitable as I had done everything and never got a CR, my logic in going ahead was, there is little else I can do now, I have had a long and busy life, so the SCT can be like a new unknown journey, a new adventure.

The treatment I am doing now is time consuming, but I do not mind, I feel even if my transplant goes wrong, they will learn something out of it so in any case it will have a positive ending.

They had found a perfect match even before I started this treatment, there are 12 million people on the registry of donors, at the Royal free they test for a perfect match as well as a match on the viruses of the donor to try to match then with yours. They must have a good reason for that.

I am glad you are doing fine, it gives me some hope.

regards

Chonette