When to call?

[Guest guest]

Hello,

I am Connie and just joined the discussion group. I am 60

and was diagnosed with CLL a couple of years ago and have

not experienced any symptoms. I have seen my oncologist and

he said he only needs to see me annually unless I develop a

problem with frequent infections or swollen lymph nodes.

I have recently noticed enlarged nodes on my neck under the

jaw. Should I call and schedule an appointment immediately

or monitor them for a while and see if its just a passing

phenomenon? The nodes aren't huge, and I don't want to

overreact but also don't want to get in trouble for ignoring

it. Any suggestions?

Thanks.

[Guest guest]

Hi Connie, I would call right away. Why take any chances.

It's your life and you need to be proactive.

Connie wrote:

/message/15712

[Guest guest]

Connie - Are you seeing a general oncologist or a

hematologist, preferably a CLL specialist or at least a

hematologist who is very familiar with CLL? If you are

seeing changes then I agree, you should see a doctor now. If

the doctor tells you you don't need to come in you need a

new doctor. The nodes could be something simple like the

reaction to an infection of some type, but it's as important

for you to know that as it is for you to know if they are

CLL related. If you need recommendations for a CLL person in

your area give us a general idea of your location. Someone

is sure to be in your general area and have the names of

good people to see.

Pat

[Guest guest]

Hi Connie, here are some actions for you to consider:

If you have not seen a CLL specialist, obtain a referral and

appointment. The average community practice

hematologist/oncologist does not see enough CLL to be a

reliable evaluator and treater. This arises from the the

wide range of courses the disease can take, including a

very large list of possible complications that arise out of

the immune system dysfunction inherent in CLL. A CLL

researcher-clinician is the most experienced, focused,

knowledgeable specialist, likely to be alert to unusual

circumstances, and connected to a world-wide network of

similarly qualified CLL specialists.

When you were diagnosed, did you have a complete workup?

CBC and CMP, FISH, flow cytometry, quantitative

immunoglobulins, B2M, LDH, CD38 and ZAP-70? These tests are

important for characterizing your individual CLL, for

establishing a baseline, and for detecting comorbidities

and/or complications. The FISH results, and other tests,

can influence the timing and type of treatment in some

cases. Given emerging lymphocytosis, updating at least some

of these tests is now appropriate, especially the CBC and

CMP, LDH and B2M. In some few cases, depending on your

circumstances, a CT scan and bone marrow biopsy may be

appropriate, as well.

While swollen lymph nodes are generally not an emergency,

when they emerge it is time for a follow up visit to

determine the rate and nature of progress of your disease.

Rapidly expanding lymph nodes are an important symptom of

DLBCL (as well as acute infections), and while this is a

very rare transformation, early diagnosis and treatment are

crucial.

A good source of information includes, if you do not already

have it, Understanding CLL/SLL Chronic Lymphocytic

Leukemia/Small Lymphocytic Lymphoma. A Guide for Patients,

Survivors and Loved Ones. First Edition, 2010. Also known

asThe Red Book. This booklet is an excellent source to

guide your inquiries and learning effort. The booklet has

the advantage of presenting a comprehensive overview between

a single set of covers. It is published by the Lymphoma

Research Foundation, in collaboration with the CLL

Information Group (see below). The editorial board is a

nearly complete who’s-who of U.S. CLL experts. The booklet,

about 100 pages of well written introductory material, is

available in two forms. First, online in PDF format at

http://www.lymphoma.org/atf/cf/%7B0363cdd6-51b5-427b-be48-e6af871acec9%7D/CLL_SL\

L10.PDF

or http://tinyurl.com/yg7829q

and second, free by mail using the online order form at

http://www.lymphoma.org/site/apps/ka/ct/contactus.asp?c=chKOI6PEImE & b=1574259 & en\

=iiJLJVODLeKMJUOHJgLJIUNILjKXK6MCJhIWK2OKJqL3IjJ

or http://tinyurl.com/3jdnzxy

Finally, one thought on the course of CLL as an immune

system dysregulator and neutralizer. When diagnosed in 2005

with CLL, I thought I'd drawn my share of misfortune. Not

so. Six years on, I have been further diagnosed with

prostate cancer, squamous cell carcinoma (2), and basal

cell carcinoma. These secondary through nth cancers were

likely mediated by the immunosuppressive effects of CLL and

treatment, FCR in my case. Be alert for symptoms of other

diseases against which your body can longer mount effective

defenses.

Regards,

Tim Klug

[Guest guest]

Tim,

I, too, have had neck (under jaw) nodes emerge recently ..

in fact, ENT doc said there was a cluster. I will be seeing

the NIH team for my untreated CLL in October, but wonder how

DLBCL is diagnosed. PET scan? Or, is it just natural that

after four years of CLL with very high ALC (exceed 100k

during first year) ones neck nodes blossom? There seems to

be some wax and wane / ebb and flow / to the sizes. At

first, I thought they were there because of infection. But

the infection seemed to go away and yet they remained. Ah,

the never ending joy of discovery on this CLL journey.

Lynn

-TIM --

> While swollen lymph nodes are generally not an emergency,

> when they emerge it is time for a follow up visit to

> determine the rate and nature of progress of your disease.

> Rapidly expanding lymph nodes are an important symptom of

> DLBCL (as well as acute infections), and while this is a

> very rare transformation, early diagnosis and treatment are

> crucial.

[Guest guest]

Hi Lynn,

Diagnosing DLBCL, or Richter's Transformation by its other

name, is a job for a CLL specialist. It is not common,

occurring in up to 10% of the CLL population over the life

of the patients, and all the characteristics are not

specific to DLBCL.

Generally, emerging lymph nodes are not uncommon in

uncomplicated CLL at four years post-diagnosis, and

variability is common, as well. In contrast, Richters would

likely present with rapidly progressive adenopathy.

Three of the most common DLBCL symptoms are fever, rapidly

progressive lymphadenopathy, and high LDH - greater than in

uncomplicated CLL. These features are warning signs - not

definitive diagnosis.

The clinical and laboratory features of transformation vary

among patients, involving as many as nine symptoms (at

least) in differing combinations from patient to patient.

This variability in the disease presentation requires a

detailed and careful differential diagnosis.

If Richter's is seriously suspected, the specialists at a

CLL research and treatment center such as MD should

be included as consultants in the process of diagnosis. I

mention MD particularly because they have run

relevant studies of transformation to DLBCL.

You mention that you are on the NIH study. That is a big

advantage for you - the study group may or may not be versed

in transformation to DLBCL, but they can help educate you

and possibly refer you, if warranted, for careful evaluation

by specialists experienced in DLBCL. In the meantime, you

can raise your concern with your treating specialist as a

first step.

None of the above is qualified medical advice: consult with

your doctor.

Regards,

Tim Klug