Saturday, February 19, 2011

What is Normal? Or Does Size Matter?

A few of you have asked what is the size of a normal lymph node. We have around 500- 700 of them so I guess it would be good to know.

If only we did.

First let me say that there can be cancer in a tiny node less than 5 mm.
Like everything in CLL it is the trends, not a single measurement that matters.

Nodes also swell from many causes including infection, inflammation, and cancer. They can shrink with exercise or castor oil topical treatments.

How they feel gives some imperfect clues as to their origins.

Palpable rock hard nodes makes you worried about metastatic disease, especially if the nodes are fixed to the tissues below or the skin above. Firm rubbery nodes are more typical for lymphomas including CLL. Tender nodes points you towards infection, but not always.

As for size, it depends. Are they growing? Are they more numerous? Nodes can jump from 1 cm to 2 cm to suddenly 6 cm, not because the cancer is taking off, but because a cluster of nodes have grown together and the clinician's hands or the CT scan feels or sees them as one entity.

You must always ask if there another explanation for the size or change besides the CLL.

Depending on whom you read, and where the nodes are, they may be considered abnormal if they are bigger that 5 to 20 mm.

A node of 6 mm at your funny bone is worrisome. but a 12 mm node in the groin may be perfectly normal.

Gut nodes tend to get bigger as they are found lower in the pelvis. Nodes in the groin are a bit larger and stilL OK.

All that said, the rough rule of thumb any nodes that is greater than 1 cm (10 mm) is usually considered abnormal. It is certainly easier to remember than the long lists of what is normal and where.

So I follow the trend, and get worried when my nodes get too big, whatever that means, because treatment is more problematic when nodes are "bulky".

Which is another poorly defined word, but I would say anything over 5 cm is "bulky" but some define the number at 1/2 that.

Clear as mud.


Monday, February 14, 2011

It's the Nodes, Stupid

I am not big on sharing studies here. There are other sites that I have listed before that are much better at that than this blog,

I share this to share with you some of what gets me excited. Most of the research that I read on CLL, and that is several articles everyday, are not immediately pertinent and nearly all are downright dull.

However for me, this recent study answers the questions as to where my cancer, chronic lymphoid leukemia, is doing most of its growth. And from that it is my opinion, we learn where it must wiped cleaned or there is no chance for a cure.

What this research says to me if that the cancer is most active in the nodes and the spleen, essentially a big node. That fits completely with my own experience. My CLL (after my transplant) came back in my nodes first, my hidden nodes deep in my guts. This is most obvious in those like me with 11q del that tend to have bulky nodes, but is true for all with CLL.

This has important implications for me and any CLLer. If I want a cure, which I sure as heck do, I need to get rid of all the proliferative centers in all the nodes.

Hopefully this small step will be followed soon, with the article that announces the path to the cure.

Proliferative index and expression of CD38, Zap-70, and CD25 in different lymphoid compartments of chronic lymphocytic leukemia patients

Original Research

(423) Article views

Authors: Olga Khoudoleeva, Eugeny Gretsov, Natasha Barteneva, et al

Published Date January 2011 , Volume 2011:3 Pages 7 - 16 DOI 10.2147/PLMI.S14752

Olga Khoudoleeva1 Eugeny Gretsov1 Natasha Barteneva2,3 Ivan Vorobjev1
1Hematology Scientific Center, Russian Academy of Medical Sciences, Moscow, Russia; 2Immune Disease Institute and Program in Cellular and Molecular Biology, Children Hospital of Boston, Boston, MA, USA; 3Department of Pathology, Harvard Medical School, Boston, MA, USA

Abstract: Recent studies of chronic lymphocytic leukemia (CLL) show that malignant B cells proliferate at a rate similar to normal B lymphocytes. This is in apparent contradiction to the very low proliferation rate found in blood specimens from CLL patients. To address this problem, we studied the expression of Ki-67, CD38, CD25, and Zap-70 in different compartments of CLL patients. Using triple-color flow cytometry, we examined the expression of CD38, CD25, Zap-70, and Ki-67 antigens in the peripheral blood, bone marrow, spleen, and lymph nodes biopsies of patients with CLL, splenic marginal zone lymphoma (SMZL), and nonmalignant diseases. In parallel probes of lymph node/spleen biopsies and blood taken from one and the same patient, Ki-67 expression was 17 times higher. Among the whole cohort, we also found significantly higher Ki-67 expression in biopsies from lymph nodes and spleen (4.95% ± 0.55%), compared with bone marrow (1.88% ± 0.32%) and peripheral blood (0.45% ± 0.03%,). We show for the first time that proliferation of B lymphocytes in CLL patients is associated primarily with lymph nodes/spleen.
Malignant cells in the blood represent only a subpopulation of nonproliferating and less-activated B cells in this disease.

Keywords: chronic lymphoid leukemia, CD38, Zap-70, Ki-67, bone marrow, lymph node

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Wednesday, February 9, 2011

Celebrate Black History Month with Nordstrom

Two of my favorite top quality organizations are teaming together to help meet a critical unmet need in the black community.

Here is the story:

Nordstrom, Inc. is recognizing Black History Month in 2011 by teaming up with Be The Match® to help raise awareness of the critical need for more African American marrow and umbilical cord blood donors.

According to Be The Match, more than 10,000 U.S. patients are diagnosed with diseases like sickle cell anemia and leukemia every year, and their best or only hope of a cure is a bone marrow or cord blood transplant. These patients do not have a donor match in their family, and rely on the Be The Match Registry® to find a match. Patients are more likely to match a donor from their own race or ethnicity, but just seven percent of the Be The Match Registry’s 9 million members are African American.

For more information about the Nordstrom Living Well campaign and Be The Match visit

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Tuesday, February 8, 2011

Moral Dilemma

One of my web search spiders found this news article about a newly diagnosed younger man with CLL who seemed to be rushed into very aggressive inhospital therapy within less than a week of diagnosis by his local oncologist in his small town (well small by LA standards).

I paraphrase the article:

... was told by doctors Jan. 26 that he has chronic lymphocytic leukemia, a disease that causes the accumulation of too many mature white blood cells called lymphocytes.

The condition can be treated, according to ...'s family and a local oncologist.

... began receiving 24/7 continuos chemotherapy treatments at the beginning of the month at .... Hospital. He is to going to get seven straight days of treatments and must be in hospital the entire time.

This set off all kind of alarm bells for me. Early aggressive treatment is almost never needed in CLL and in some cases can clearly shorten the patent's life by exposing them to unneeded chemo that can turn a smoldering sleepy CLL into an aggressive hungry beast that is hard to knock back.

Sadly, I have seen well meaning community oncologists do that more than once.

And more concerns. Why in-hospital? What weird 24/7 day therapy is he getting?

It was not adding up.

So I searched and found the fellow's email address and carefully composed this letter, but was hesitant to send it.

Dear Mr .....,

I read an article on your recent diagnosis of CLL and and as a fellow victim of CLL, I am bold enough to suggest that there are many resources to help you in your battles ahead.

There are many more sources of help on the web and near you.

I may be bold, but not so bold or stupid to offer any medical advice by email. Whatever I say, please consult with your personal doctors. I obviously know nothing of your particular case and so my comments are general.

It is rare to need immediate treatment for CLL. Most, but not all patients are best advised to avoid early chemo if possible. I usually recommend that it is best to get a CLL expert for a second opinion from the start before starting any therapy. CLL is quite rare and most local oncologists are not experienced with the nuances of its treatment.

I wish you the best and if I can help in anyway, please email. Again, I am not suggesting that you delay or change any recommended therapies.

Brian Koffman

You see how careful I must be. This stranger didn't email me, didn't ask for my help. and didn't even post on a CLL list. I found him through an article that made a local paper because of his high community profile. Sounds like a sweet guy maybe heading off a cliff, but what do I know? What right do I have to interfere and especially to plant seeds of doubt in his already most assuredly overwhelmed mind?

But how do I live with myself if I do nothing. Mustn't I fire a shot across his bow to warn him to get some help and quite possibly radically change course.

At my wife's urging, I decided to let it sit for a while and see if I could find out more about the guy.

Pay dirt!

He has a Caringbridge page. There are already multiple posts by his wife. I read them as they appear, from the last to the first. My heart sinks more. He already has almost finished his chemo, and will soon be on his way home, so I sure need to modify my planned email. No point in making him feel bad about chemo he has already had. No point in calling the fireman when the house is burnt down.

None of the posts contain mention of the drugs in the cocktail he is getting. No physical findings or even the most basic lab results such as a CBC are listed. Well, not everyone is medically oriented.

I finally get to page one and it turns out that my Mr ..... was ultimately diagnosed with hairy cell leukemia, not CLL after all.

The need to send him my email evaporates. His rush to therapy in hospital and the "weird" therapy makes perfect sense. The pieces fit together.

Moral dilemma and problem solved.

For this case.

But it raised the bigger issue. How do I get the word out to all who are newly diagnosed to get a second opinion and don't rush into therapy ?

What is my responsibility? And liability as a doctor?

I welcome your comments.

Lessons learned? Just like in CLL itself, there is almost never a need to rush to judgement in offering counsel. Dig deep, research, read, and reread, and then stop and think, ask your spouse to review your plan, and maybe then act.

As Jon Kabat-Zinn said so long ago that I almost forgot:

Meditate, act, and be aware

On a personal note I am in the infusion center now for IVIg and my Hgb is a very normal 14.9 and my platelets have climbed to 411,000. WOW! Guess the results two weeks ago were just a lab aberration. Or maybe it was my week of a strict cleansing raw diet. It is probably the lab.

Liver tests are pending.


Wednesday, February 2, 2011

Back from China


We got back from an amazing exhausting and bitterly cold trip to China, spent one day at home getting IVIg and then flew to San Francisco for 4 days of meetings and a chance to visit my daughter and son-in-law.

I am still recovering.

More on China later and my family later, but first let me share that my latest lab shows my anemia is getting worse and for the first time I have some very mild liver inflammation.

It is premature to see this as a true trend, but not that premature. Next week's studies should provide the information as to whether these are just a meaningless fluctuations that might be explained by my radical change in diet (my dad's comment to me on my return was: Had enough Chinese food for the rest of your life?) and the considerable stress of travel, or are they the harbingers of real change.

If the liver tests get worse, then I will probable restrict my diet more, and add milk thistle. An ultrasound and some lab may be needed. Hard to figure the cause. Medications seem like the most likely culprit.

If my anemia is confirmed, then I will need to look for causes: AIHA? meds? extensive CLL invasion of the marrow? or the dreaded MDS (myelodysplastic syndrome) that I recently lectured on. That would be ironic. I doubt it is nutritional.

My anemia is macrocytic, which means my red calls are too big. The common causes such as low B12 or folate, thyroid disease and alcohol abuse don't fit for me, so early MDS or meds seems most likely. My peripheral blood counts show no increase in my lymphocytes, so I doubt my CLL is going crazy in the marrow. And my platelets are great. Besides, my last BMB was pretty stable with very low levels of disease. And there was no evidence of MDS, but it can be hard to detect even if you are looking for it, which we weren't. Autoimmune hemolytic anemia is not usually macrocytic, but is easy to test for. A repeat bone marrow biopsy will be needed to check for MDS or crowding out of the good cells by CLL and I have one scheduled for April already.

Not wanting to borrow trouble, I will wait until next week before getting too worried about all this stuff.

My bet? The next blood draw is not definitive, suggesting that I am not falling off a cliff nor am I clearly on stable ground.

Such is the world of CLL.

In the meantime, I will get some much needed rest. Still so jet lagged. Or, I must admit, I worry that it might be the anemia.