Allogeneic transplant

[Guest guest]

Sybil, Thanks for the suggestion that 79 may not be

too old for an allogenic transplant, but I think I'll

go on just as I am. I really don't want to live too

long. I'm more concerned about quality of life, and in

spite of the fact that my cough feels like a plague, I

go to the gym daily and walk one and one-half miles,

take two courses at the Brown Community for Learning

in Retirement and two at my temple as well as starting

to learn Yiddish/ I taught myself to play the recorder

and now play soprano,alto, tenor and bass with an

ensemble. My quality of life is good. I appreciate

everyone's encouragement. Carolyn

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

> Wow, this group has certainly been active in the

> past few days! I'm not strictly a CLLer but want to

> share my experience with allogeneic transplant

> anyway, since there have been many posts about the

> subject lately. The type of NHL that I had was

> " unclassified, " but it closely resembled CLL/SLL

> under the microscope, and also mantle cell lymphoma

> and lymphoplasmacytoid lymphoma. I was diagnosed at

> age 48 and had two chemo protocols in 2 years, CHOP

> and R-CVP. On second relapse in Dec. 2005, the

> disease was acting like multiple myeloma, causing

> extensive bone lesions, so transplant was

> recommended as the only sensible recourse at that

> point. I had a tandem transplant, which involved an

> autologous stem cell transplant first, preceded by

> heavy chemo and TBI, to get the disease under

> control, and then an allogeneic bone marrow

> transplant using marrow from an unrelated but well

> matched donor, six months later. I received the

> marrow on Dec. 6, 2006, so I'm now nearly one year

> post allo transplant. Both transplants were done on

> an outpatient basis and were uneventful. I've had

> practically no graft versus host disease, never had

> to take prednisone, and am now off the

> anti-rejection drug, tacrolimus. Best of all, the

> lymphoma appears to be a thing of the past. No sign

> of it on bone marrow biopsy or CT scans. I feel

> wonderful and am working full time again.

>

> Of course no doctor will say I'm cured and who knows

> what may happen in the future, but my experience

> with transplant to date has been nothing but

> positive. Maybe these so-called " incurable "

> lymphomas can be cured after all, without negative

> side effects. Time will tell! Note to Carolyn Swift:

> I know of a 75-year-old lady who had an allogeneic

> transplant (matched unrelated donor) for mantle cell

> lymphoma in August, and she's recovering nicely. No

> GvHD so far! If you're a risk-taker in generally

> good health apart from the cancer, age may not be a

> prohibiting factor after all.

>

> Sybil Whitman, 52

> New Brunswick, Canada

>

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[Guest guest]

Thanks to Chonette for sending the links to the CLL Topics site. I hadn't visited that excellent site in recent months and I see there's plenty of new material about transplants, and probably about other treatments too.

The transplant decision was easy for me. Not long after my diagnosis (with mantle cell lymphoma at first), I read about a successful allo transplant for MCL: complete remission and excellent quality of life for 10 years and counting post transplant, and I knew that was what I wanted. It took two years and two failed chemo regimens to convince the doctors to go ahead with it, though.

Treatment decisions are very personal. Carolyn, I hope your quality of life will remain good for a long time to come. That's the real gold, for all of us, no matter what treatments we choose.

Sybil Whitman, 52, Canada

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

[Guest guest]

Sybil,

We think alike, we are all individual and have different views, I also think quality of life is for me at least the most important thing, and as I am older and have had a very full life I am contented with my past and have very little more that I have not done or seen.

I am researching transplants because my NHS consultant think due to how healthy I am and the fact I have run out of options on treatments, a transplant would be a good route to consider.

I wanted to be more familiar with transplant terminology etc. before I have to see the transplant professor in London, and then be able to ask the right questions, I am hoping a very good friend of mine who is a pharmacist will come with me when the appointment come.

I have spent so long saying NO to things suggested by the NHS consultant that this time I am going along with her suggestions and see what the transplant specialist has to say.

I have been in the care of prof. Hamblin for the last 2 years and we have discussed the issue several times over those two years, and every time we both felt I would not go that route, due to my strong views on quality of life, however now that I have finished my treatment and I am again back to the old NHS consultant and having discussed it with him again, Prof. Hamblin said whatever I decide he will back me up.

never an easy decision

regards

Chonette (UK)