CLL in Spine, Large Spleen and Nodes

[Guest guest]

Dx in 2004, W & W till I started R in 2/10 and 7/10, CR in Sept., Shingles in

10/10, CR 11/10 . We found my CLL moved into my spine and my Spleen and Nodes

are very large. I have weakness in my legs and less energy than usual. I

moved to Sloan Kettering for a consult and this is what is offered to me. A

Phase I-II Study of Pentostatin, Cyclophosphamide, Rituximab, and Mitoxantrone

in Previously Treated Patients with Chronic Lymphocytic Leukemia and Other Low

Grade B-Cell Cancers

Lamanna, , MD

Does anyone have any comments or knowledge of these drugs, I've had two of the

four, CR, already, My blood counts did well but the nodes and spleen did not.

They will treat the spine with Methotrexate via a head port. I pursued the

weakness in my legs after no one gave any reasons for it and no ways to fix it,

so after a month I asked to see a neurologist who found it after an MRI and

Spinal Tap.

[Guest guest]

Steve

Truer words have never been spoken,

[Guest guest]

I am confused. It sounds like you have had 2 out of 4 cycles of PCR +

mitoxantrone, and have achieved a CR, but if you nodes and spleen did not do

well, than it should not be a CR.

It is very unusual for CLL to travel into the spine and it is important to make

sure you are not dealing with a transformation.

>

> Dx in 2004, W & W till I started R in 2/10 and 7/10, CR in Sept., Shingles

in 10/10, CR 11/10 . We found my CLL moved into my spine and my Spleen and

Nodes are very large. I have weakness in my legs and less energy than usual.

I moved to Sloan Kettering for a consult and this is what is offered to me. A

Phase I-II Study of Pentostatin, Cyclophosphamide, Rituximab, and Mitoxantrone

in Previously Treated Patients with Chronic Lymphocytic Leukemia and Other Low

Grade B-Cell Cancers

> Lamanna, , MD

> Does anyone have any comments or knowledge of these drugs, I've had two of the

four, CR, already, My blood counts did well but the nodes and spleen did not.

They will treat the spine with Methotrexate via a head port. I pursued the

weakness in my legs after no one gave any reasons for it and no ways to fix it,

so after a month I asked to see a neurologist who found it after an MRI and

Spinal Tap.

[Guest guest]

I can¹t answer your specific questions on tx for cll in the spine but can

simply comment with my own experience. I grew weaker over a number of

months in my legs and simply thought it was the cll progressing. I did have

an appt with a neuro/oncologist but went to the ER before the appt. The

symptoms progressed very rapidly and in a few days I was in a wheelchair and

could hardly move my feet and hands. Steroids (high doses) improved my

mobility greatly.

Long story short, two rounds of methtrexate did not work for me and was

discontinued. I had a fairly high dose of radiation (20 sessions) on my

spine and that worked, though they were not too optimistic before starting.

A few months later I had 4 rounds of bendamustine and rituxin, I believe,

mostly to prepare my bone marrow for a autologous transplant, coming up

later this month.

I¹m being seen at mass general by a father and son team, the hochbergs, one

a neuro/oncologist, the son a hematological oncologist. At one point I was

told my condition was so extremely rare that I may be the only case. They

were never able to get a definitive reading from the lumbar puncture.

However, the elder hochberg finally told me his best guess was that I had

cll in the spine. Though very rare, it does exist. I handled the chemo

extremely well and have regained my mobility (still working on strengthening

my muscles).

I will be having the BMT in the next few weeks largely as I understand it,

to prevent the recurrence of the CNS (Central Nervous System) involvement.

Even so, with the BMT, I am told the possibility of CNS recurrence is 50%.

I sure wish the odds were better. There is also the possibility of another

bmt, with a donor¹s cells (allogenic).

I am feeling very well now, in remission for the time being. I have great

faith in my docs­they worked very hard on my case I am told. I also have

great respect for Mass General‹the treatment at the Yawkey Center, the

outpatient arm of MGH, has been phenomenal.

Oh quick background: dx in 2006 at 45, ten years W and W, 11 q deletion,

mutated, will be 56 this month. So as odd a trip as it has been I am

fortunate to be in very good hands for my treatment.

Wishing all well in the new year.

Lynn collinsb