Starting BR treatment

[Guest guest]

Hello

My husband Bill was diagnosed with CLL 6 months ago, though

looking back his WBC has been high for the last couple of

years, and doubling <12 mos. He is scheduled for

bendamustine and rituximab treatments starting next week. I

liked the format Charlie used in an earlier email so I'll

use that. I'm fairly new to the game, but I'll do the best

I can.

1. 60-year old male, good health except he gets tired, physically and

mentally. He says he has lost his " spark. " He has also lost quite a

bit of weight.

2. WBC 119K, up from 78K last December (I couldn't figure out

Absolute Lymphocyte Count--?)

3. RBC & hemoglobin a little low, immunoglobulin suppressed,

platelets OK

4. Large number of bulky lymph nodes with moderate activity, spleen OK

4. Has Trisomy 12 and deletion of 13q14; no TP53 mutation

5. ZAP 70 indeterminate (20%)

6. Atypical-- " Bright expression of surface light chain

immunoglobulin, " but dr says not mantle cell

7. Hepatitis B antibodies but no live virus, so this should not be a

problem. However, because of this he won't eligible for most clinical

trials (otherwise, might have used GA101 instead of rituximab)

8. Diagnotics: FISH, flow cytometry, lymph node and bone marrow

biopsies, CT scan, earlier PET scan and one more before treatment

9. His physician, CLL specialist Dr Herbert Eradat at UCLA, at first

recommended " watchful waiting " but then became concerned about the

size of lymph nodes and decided to start now. We talked this over

with another oncologist but have not gone for an official " second

opinion. " I'll just mention here that I believe that UCLA no longer

uses fludarabine.

Questions:

1. Generally, how does this all sound? Anything stand out, or more

details wanted?

2. How can he-- and I-- prepare for this? A friend of mine suggested

a " chemo comfort kit " of food and medications for when he gets home.

Any special things we should look out for during and after treatment

(besides re-reading the list of side effects)? In particular, what

should and shouldn't I do as an " advocate? "

3. Anyone else who's gone through this regimen want to tell us more

of what to expect? Especially how soon you started feeling better.

4. I've been reading the other posts about effects of chemo, avoiding

it until absolutely necessary, and how hard it is to tell when to

use. Not sure what my question is here, but we feel good about Dr.

Eradat, just nervous about the whole thing.

Thanks,

Judy C.

[Guest guest]

Greetings,

I completed six cycles of Bendamustine and Rituxan in

January 2011. It was the fifth treatment for me in a period

of 20 years during which I have been diagnosed with CLL/SLL.

I was 78 at the start of treatment and very cautious about

Fludarabine having experienced two cycles of clofarabine on

a clinical trial with what I felt was severe impact on the

bone marrow with anemia, great fatigue and finally non-

specific lung infection requiring hospitalization. (I

stopped that clinical trial.) The B+R regimen was relatively

smooth. I felt in good hands in my teaching hospital

infusion center. But there were difficulties in getting the

Rituxan administered though it was accomplished each time

very slowly. The first time was the worst. I began to feel

better by the seventh month and my lymph nodes while reduced

significantly were in no way eliminated. Most effects of

the treatment occurred in the first four months as measured

by CT scans. My weight loss (25 pounds) has stopped and

chronic indigestion abated.

I feel much better.

Time will tell how long this lasts and when I will have to

consider treatment again. In the meantime, I am very glad

that I this is the treatment which I selected in conjunction

with my regular oncologist and a second opinion.

Anne

Judith Citrin wrote:

/message/15289

[Guest guest]

Anne

Thanks for letting me know about your experiences. I'll

keep in mind what you said, and I'm glad BR treatment was

relatively smooth. Any tips for the indigestion? And what

did you mean that there was difficulty in administering the

Rituxan?

Hope your treatment works a long, long time.

Judy

On Jun 7, 2011, at 5:56 PM, Cann wrote:

/message/15294?l=1

[Guest guest]

ALC is WBC times the lymphocyte percentage -

In a message dated 6/7/2011 Judy C wrote:

/message/15289