why test during watch and wait

[Guest guest]

I am 49 with CLL for 2 years. I have not needed treatment

yet and am in the watch and wait period. I see a local

hematologist every 5 months for blood work and a cat scan

every year or so. I have also seen a CLL specialist. Both

doctors have told me that they would not treat me until I

develop more severe symptoms regardless of my CBC results.

My question is why bother with blood work, doctor visits and

CAT scans. It appears that they do not treat based on these

findings. I have lousy insurance so I pay several hundred

dollars for these visits and the blood work each time. I

also get stressed out and depressed before and after each

visit. I could just pretend that I don't have CLL until I

feel really sick and see a doctor at that point only.

Surely I am not the first to ask this question but I would

appreciate any input.

[Guest guest]

We all get stressed out and depressed before bloodwork. My

suggestion is to continue the bloodwork but not do the CAT.

If they haven't found anything by now, and you're still in

W & W, it's more than possible that another CAT wouldn't pick

up anything. I let my symptoms and my bloodwork alone

dictate my course of action.

Ellen

[Guest guest]

I suspected something like this for several years, so I did

my watch & wait for 5 years until dx was confirmed when I

got really sick. I was 48 at the time (2 years ago).

The down side of waiting was, in my case, the complication

of autoimmune blood issues (few platelets left, very low red

count, very large spleen). I was short of breath, weak,

hard getting up the stairs. This is just one case, but the

truth wasn't as scary as what I imagined for the 5

years..... and I probably really endangered myself by

walking around in that condition (jaundice, extra load on

the heart).

The CT scans would not have made a difference, because there

were just a few nodes in abdomen when finally dx. For

someone else it might have been a different story (large

nodes or mass in a dangerous location).

I can't advise, other than to say I would have been more

comfortable and in less danger if I monitored the situation

earlier.

There are some resources available to help with finances

(LLS, LRFO, others). It's not an easy process, but co-pay

assistance is definitely possible.

[Guest guest]

I know there have been recent studies that stated no need

for CT scans if you are showing no symptoms that would

warrant one. I am sure one of our MD's can provide more

detail. Also if you have no symptoms you are subjecting

yourself to radiation you really may want to avoid and the

scan is quite expensive. I think blood work makes sense

because you can see how your various counts are heading.

Just my 2 cents.

R

Adks NY

Dx 11/05, remain W & W

[Guest guest]

I don't know the feeling about baseline CT scans, but know

that the feeling seems to have changed from some doctors

thinking they should be done yearly or every other year (my

first doctor's opinion) to doing them only if there is an

indication that one is needed. A good CLL doctor will do a

hands on exam for the presence of or changes in lymph nodes.

I don't know what labs your doctor is ordering. Mine orders

a CBC with platelets and differential and a complete

metabolic panel. You can go to CLLtopics.org for a chart

that allows you to chart your labs so you can see trends,

which is more important usually than a single set of counts.

You might want to add on a vitamin D test, since so many of

us seem to be deficient. If you count is low you would want

to have it checked every 3 months or so if you are working

with your doctor to adjust a Vit D supplement until you find

the right level for you.

If you post your location there may be some who know of

doctors who are knowledgeable, buy willing to work with you

on the cost issue.

Cancer Care has had some financial aid for CLL patients in

the past. It seems to come and go. They do have terrific

counselors who can guide you to other resources. One even

told me to call another day so I would get someone else

because that person might know of something that she didn't

know about or had forgotten to mention.

As for the nerves we all, I think, go through pre lab and

pre appointment jitters.

Pat

[Guest guest]

Perhaps we have a duty to ourselves to at least monitor our

blood counts, your physician should regulate your visits to

coincide with how settled your disease course is. This will

at least alert you of any changes and prevent mishaps. This

paper gives it very clearly from the medics point of view:

How I treat CLL. An interesting overview by Gribben in blood

http://bloodjournal.hematologylibrary.org/content/115/2/187.full

His own practice is to follow patients who remain on an

expectant course every 3 months for history, physical

examination, and blood counts. This allows assessment of

disease progression and measurement of the lymphocyte

doubling time.

Comments on CT scanning From ; Staging of disease

" guidelines do not recommend computed tomography (CT) scan

at diagnosis. Although care must be taken not to overuse CT

scans in early-stage patients, in patients identified at

higher risk of progression, CT scans provide a more accurate

assessment of intra-abdominal disease than clinical

examination, and upstaging a patient by CT scan criteria

alone has prognostic significance.16 I therefore find it

useful to perform CT scans to determine baseline adenopathy

in patients who present with poor prognostic features,

particularly del 11q, since this is often associated with an

increased frequency of intra-abdominal lymphadenopathy. "

From: How I follow up patients

" Repeat scanning is not indicated routinely but is reserved

for patients presenting with specific symptoms or signs. "

This may be of help

Nick (UK)