Re: Transformation to MDS

[Guest guest]

I agree with your oncologist

Terry Hamblin MD

In a message dated 15/02/2011 20:52:37 GMT Standard Time,

jrwolleat@... writes:

I am 59 year old female; dx in 2000 with 6q deletion; tx 6 cycles FCR 2004,

CR for 3 1/2 yrs, FISH done in 12/2007 revealed 11q and 13q deletions;

pursued SCT summer/2009, found MUD/decided to wait; developed ITP 2010, tx

IVIG monthly 8/2010 - 2/2011, HDMP 8/1-12/30/10, Rituxan 1/24 & 2/1/11; fever,

dropping counts past 2 weeks

I had BMB and CT scan 2/11/11 and my oncologist told me today that my CLL

has transformed into MDS (Trisomy 8 in 58% of cells). My lymphs are 6.0,

neutrophils 1.16, rbc 3.1, hgb 10.5. He says not to treat right now but to

investigate transplant.

I would appreciate any advice and tx options.

Jillayn Wolleat

[Guest guest]

Dear Jillayn,

Did s/he say that the MDS has transformed to AML? ...

My understanding is that MDS is not likely a

transformation from CLL - but a treatment-related risk

affecting stem cells; and that there are many kinds of MDS

and some types can be observed and managed.

In cases where a transformation to AML occurs (from MDS) I

think a transplant is often recommended in transplant

eligible persons? ... just a layperson's impression.

See also Trisomy 8 in B-cell chronic lymphocytic leukemia http://bit.ly/e69Apa

All the best,

Karl

>

> I am 59 year old female; dx in 2000 with 6q deletion; tx 6 cycles FCR 2004,

CR for 3 1/2 yrs, FISH done in 12/2007 revealed 11q and 13q deletions; pursued

SCT summer/2009, found MUD/decided to wait; developed ITP 2010, tx IVIG monthly

8/2010 - 2/2011, HDMP 8/1-12/30/10, Rituxan 1/24 & 2/1/11; fever, dropping

counts past 2 weeks

> I had BMB and CT scan 2/11/11 and my oncologist told me today that my CLL has

transformed into MDS (Trisomy 8 in 58% of cells). My lymphs are 6.0,

neutrophils 1.16, rbc 3.1, hgb 10.5. He says not to treat right now but to

investigate transplant.

> I would appreciate any advice and tx options.

> Jillayn Wolleat

>

[Guest guest]

My understanding is that MDS secondary to treatment responds poorly

to meds, and transplant is the way to go. The cytogenetics of the

marrow might help.

[Guest guest]

Jillayn,

Similar to me, I was working on a getting a transplant for CLL, but I developed

MDS. I consulted two MDS specialists, as well as two transplant specialists, one

at DFCI and one at MDA.

My situation may be very different than yours because there are many different

types of MDS and different clinical status ... But here is what they told me:

-- No MDS treatment for now, because it takes too long for it to have any

effect and they

expect I would have a transplant well before that, within the next 2

months.

-- MDS has a high relapses rate after transplant so recommend do it ASAP before

it

progresses, before marrow blasts > 5% and definitely way before it

transforms to AML.

-- They recommend a full ablative transplant for MDS instead of the mini for CLL

to help prevent relapse, since I am young enough to tolerate a full.

-- If you are still young enough for a full, email me and I can tell you what I

found

among the different transplant protocols when I have more time.

LLSLL , " laneyrae " <jrwolleat@...> wrote:

>

> I am 59 year old female; dx in 2000 with 6q deletion; tx 6 cycles FCR 2004,

CR for 3 1/2 yrs, FISH done in 12/2007 revealed 11q and 13q deletions; pursued

SCT summer/2009, found MUD/decided to wait; developed ITP 2010, tx IVIG monthly

8/2010 - 2/2011, HDMP 8/1-12/30/10, Rituxan 1/24 & 2/1/11; fever, dropping

counts past 2 weeks

> I had BMB and CT scan 2/11/11 and my oncologist told me today that my CLL has

transformed into MDS (Trisomy 8 in 58% of cells). My lymphs are 6.0,

neutrophils 1.16, rbc 3.1, hgb 10.5. He says not to treat right now but to

investigate transplant.

> I would appreciate any advice and tx options.

> Jillayn Wolleat

>