Re: Relapse 15 months post FCR (6 rounds), BMT???

[Guest guest]

Hi, --

I was diagnosed with SLL in 2007 at the age of 54 and put on

watch and wait 'til the fall of 2009 when I successfully

underwent six months of FCR. Everything was great for about

10 months, but the lymph nodes in my neck and chest starting

growing again. A CT-scan showed I had relapsed, and the FISH

report from the biopsy of a node showed I had developed the

17p deletion abnormality which makes standard therapy

ineffective.

The Dana-Farber CLL specialist I met with recommended

further treatments of Rituxan and high-dose steroids

followed by a stem cell transplant. It was my first relapse,

I had no other underlying health issues, the four months of

Rituxan and Solumedrol put me into remission, and my brother

was a perfect match, so the mini-allo transplant was a " go. "

After four days of conditioning (Fludarabine and Busulfan),

I received my brother's stem cells four weeks ago today at

Brigham & Women's Hospital in Boston. The doctors had hoped

for five million cells, but they were able to harvest a

whopping 9,470,000 stem cells from my overachiever brother.

Unbelievably, I was discharged from the hospital the next

day with a ton of antibiotics, anti-rejection drugs, and

other pills to help prevent Graft-vs-Host Disease, as well

as mouth rinses to prevent mouth sores, tooth decay, etc.

, I'm into this a mere four weeks, so I can't say what

might happen down the road, but so far, I'm doing so much

better than I had expected. I went to Dana-Farber three

times a week for a few weeks for blood tests and doctor

appointments, but I've already graduated to once a week for

the same stuff. My numbers are all over the place, but they

tell me that's normal. The engraftment took place within two

weeks of the transplant which was very exciting. I've had no

fevers and no need for transfusions so far.

Prior to the transplant, we had our house cleaned from top

to bottom by a professional cleaning company, bought three

good air purifiers for the rooms we use the most, and I stay

inside except for the trips to the hospital where I wear a

mask and gloves. I'm following orders and doing everything I

can to avoid landing in the hospital again. It has worked so

far.

I hope mine will be a success story, but it's probably too

early to tell. My appetite is pretty good and I've even

started walking on my treadmill again when my energy level

allows. And remember ... it was only four weeks ago today

that I had the transplant.

Good luck to you and your husband as you go through this

adventure (that's what my husband calls it).

Debbie

[Guest guest]

Hi : My story is similar to Debbie except for

following changes.

I was diagnosed with CLL in 2/2002. W & W till 2009. Had

FCR 6 cycles in 2009 with good response but recurrence in 10

months. My Oncologist at DFCI recommended Mini Allo Stem

cell from my fully matched Brother. FCR X 5 cycles,

followed by 4 days of conditioning, then Stem Cell on April

21, 2011 at Brigham & Women. I am 5 months post transplant

today and doing fine. I have monthly follow ups now.

Be strong and follow all the instructions you are given.

Avoiding infections is very important.

Good Luck!

Purnima

Debbie wrote:

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