Re: Looking for advice - dad newly diagnosed

[Guest guest]

Dear Dominique,

The most important advice I can offer is to make sure the

diagnosis is correct by getting a second opinion on the

pathology and the plan. There are also additional tests

that can give your doctors an idea about the efficacy of

certain modes of treatment, but the most important factor

will be the cell type and errors in making this

determination are, unfortunately, not uncommon. Some drugs

work better with some cell types.

How your father's blood is doing is determined primarily by

a Complete Blood Count or CBC. Hemoglobin and Platelets, as

well as the total white blood count (and how fast and how

much it increases in time). Others on this list can explain

the medical details far better than I so I won't go beyond

this. Consider trying to see Dr. Kipps at UC San Diego, he

is a leading specialist in CLL.

Good luck to your Dad. He's lucky to have you looking out

for him!

Toby Hollander

Portland, ME

Dx SLL/CLL 1999, W & W; tx w/ rituxan, prednisone & low dose

cytoxan 2003; tx w/ rituxan & low dose cytoxan 2009; in

remission.

[Guest guest]

Hi Dominique,

1) Learn all you can about CLL. Here are the 2 best sites

for this.

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm

http://cllcanada.ca/2010/index.htm

2) See a CLL expert doctor as soon as possible. CLL is

relatively rare so local doctors are not that knowledgeable

about it.

2) You mentioned UCLA in your post - FYI, UCLA now has a CLL

expert doctor (Dr. Herbert Eradat). He sees patients at the

UCLA Hematology/Oncology office in Santa . For an an

appt. call (his clinical asst.) at 310/586-2663. Dr.

Eradat sees patients Mondays & Wednesdays. The rest of the

week he teaches at UCLA.

3) If you're interested Dr. Eradat is giving a talk about

CLL this Thurs. evening at UCLA.

Topic: Chronic Lymphocytic Leukemia (CLL)

Speaker: Herbert Eradat, MD UCLA Lymphoma Program

Date: Thursday, May 26, 2011 Time: 6:30-8pm

Location: 200 UCLA

Medical Plaza

*Please RSVP for this program by May 24th to Tricia Jarmer

at 310-846-4704 or tricia.jarmer@...

The room location will be given when you RSVP

4) If your dad is computer savy he might like to belong to

this forum and there is another forum

http://www.cllforum.com/ that is good for general info.

The CLL community is a caring & sharing group. I have found

much comfort and support from the other members.

Stay in touch -

Patti Kruse

[Guest guest]

I was going to UCSD for 2 years (Dr. Castro). During that

time I was never able to get an appt. with Dr. Kipps (always

told he was not taking any new patients). I recently

switched to Dr. Eradat (the CLL expert doc at UCLA) since

UCLA is much closer to where I live than UCSD.

Patti Kruse

[Guest guest]

Hi Dominique,

I was diagnosed with SLL in 11/02, did R-CVP in 03 Rituxan

maintenance for 2 yrs, 2yrs of stable disease, then back to

rituxan quarterly and now monthly.

Watch and wait is good. One thing you will hear a lot is

treat the symptoms not the numbers. SLL/CLL can be sneaky.

It hides out in the lymph nodes so blood work doesn't always

reflect what is going on.

If I had it to do over again I would have had all of the

prognostic tests done at time of diagnosis. These tests:

B2M

Fish (chromasomal abnormalities)

IgVH (gene mutation status)

CD38

Zap70

will help determine the treatment course and give you a

baseline as the disease progresses.

One of the other posts mentioned the web site CLL Topics and

CLL Updates. They are excellent sites for explaining all

aspects of the disease and current research. The articles on

prognostic indicators are especially good.

Use the watch and wait time to research the disease and you

will be an informed advocate for your Dad.

I went directly into treatment after diagnosis and was in

shell shock for the first several months and didn't know

what to even ask.

You are on the right track and I wish you and your Dad the

best.

Mike Cole

[Guest guest]

Dominique

My standard advice is get an expert or become an expert on

CLL. No-one I know at CoH qualifies, and I had my transplant

there. There are great docs, but not CLL gurus.

Your dad should get caught up on his killed (AND NONE OF THE

LIVE) vaccines as soon as possible.

At clinicaltrials.gov there are several gentle options for

those early in their disease not needing treatment yet.

Look at the antibiotic trial, look at the data on green tea,

Vitamin D, exercise and make your best decisions.

Stay aware

[Guest guest]

Dominique, after the shock of your mother's diagnosis, it

may help to see how different cll is.

When someone has symptoms, goes to their doctor and is

diagnosed, the stage of the cll disease may not be that

advanced. Overall, cll has a good prognosis. Many people

diagnosed with cll are likely to live for many years, unless

a secondary infection such as pneumonia intrudes. The start

of treatment will probably be determined by increasing

symptoms rather than blood test results

http://www.cllsupport.org.uk/uybresults.htm

but this will not be that time critical. The range of

treatments is increasing significantly in trials that are

taking place now.

If your dad is healthy now, this will continue to help

prevent secondary infections. Apart from blood tests, other

tests will be needed to assist with treatment, but that may

be some years away, so the other tests will be more relevant

then. That will be the time to be proactive making sure the

treatment is administered properly and stops at the right

time. By then you will have more information.

Wishing you luck at this trying time,

Oliver

Dx Aug 2008 52yrs

Tx WBC 300 - 5 cycles FCR Sep 2010