Re: sll

[Guest guest]

Hi Aviva,

Yes, my diagnosis was SLL in Oct 2001. I was on watch & wait for 3

years. Lymph nodes in my neck were swollen (they had been up & down

but now were up & up) and my energy was down.

In November 2004 was treated with Rituxan alone. Allergic reaction

during infusion was treated with Benadryl. Within 3 days I could feel

the nodes had gone down & I had a lot more energy. The following 5

weeks were without any side-effects.

It worked so well I decided to go on rituxan maintenance every 4

months for 2 weeks. Then I felt the maintenance was pointless &

stopped after a year.

2nd treatment round with Rituxan was in Dec.2007 (6-week course)

due to symptoms of malabsorption.

Onc. seems to think that we'll keep trying rituxan if/when symptoms

return, because it works so far.

51

> Are there any members of the group that were diagnosed with Sll?

> Are there any members of the group that have or had rapidly

enlarging lymph nodes in the neck?

> Aviva

>

[Guest guest]

Dear Aviva,

I was just thinking the SAME THING today! It is my understanding that

under the microscoope an SLL cell and a CLL cell look identitical. But

behaviorally they are anything but. It seems clear to me that they are

different in some way that just hasn't been discovered yet.

I was diagnosed in 1999. I got a second opinion on both the pathology

and proposed treatment from Canellos at Dana Farber. I had

enlarged lymph nodes in the abdomen and groin and neck, but no " B

symptoms " (night sweats, weight loss, loss of energy, etc.). I waited

and watched for almost 4 years. Then I developed high blood pressure,

which was, it turns out, a reflection of kidney inflammation. The

inflammation was caused by cryoglobulemia, a thickening of the blood at

decreased temperatures which carried globulins that inflamed the

kidneys. It was believed that the lymphoma caused the cryoglobulemia,

so that the lymphoma needed to be treated. I began with high dose

prednisone to address the inflammation of the kidneys, followed by

rituxan and low dose (100mg) of cytoxan to deal with the lymphoma while

the kidneys were biopsied to confirm the diagnosis. In the meantime,

the prednisone was not sufficient to quell the cryoglobulemia so we

started plasma phoresis (an exchange of plasma) which helped

substantially, but required treatment over a period of 4-5 months. At

the same time I was doing rituxan and cytoxan. I did two rounds of

rituxan and did 100 mg of cytoxan over a period of about 8 months.

That got me a 4+ year remission. Recently an MRI showed abdominal

lymphnodes starting to grow again and my spleen has also enlarged, with

platelets declining to around 100. Still no B-symptoms. I'm starting

to consider options again (feel free to offer two cents worth). But

that's basically my story. I have been intrigued by the recent report

of adding fresh frozen plasma to a rituxan regime in refractory CLL

patients with success, but worry that the study was so small (5

patients). Still, there may be clues there about the efficacy of

rituxan or even the difference between CLL and SLL. Who knows?

Probably more than you wanted to hear, but that's why God gave us the

delete button!

Toby Hollander

Portland, Maine

>

> Are there any members of the group that were diagnosed with Sll?

>

> Are there any members of the group that have or had rapidly enlarging

lymph

> nodes in the neck?

>

> Please let me know of your experience, treatment, outcome, etc.

>

> I would really appreciate it.

>

> Aviva

>

[Guest guest]

Hi Aviva,

I was diagnosed with SCLL in 2000 stage IV. No B symptoms,(sweats, itch

etc) normal blood, nodes swollen in neck, no fatigue.

I have not had to undergo treatments. I remain on Watch & Wait. Get

checked every six months at MDA and every three at local onc.

Feel great.

evelyn