Tuesday, January 06, 2009

I’m a lymph node baby daddy

OK, I’ll sheepishly admit that if it’s late at night and I can’t sleep, I’ll watch the Maury Povich show. It’s more mindless than medication and a lot less expensive.

Maury, for those of you who have your TVs tuned to PBS, is a long-running talk show host whose specialty is DNA paternity testing. If there’s a woman in America who slept with 20 men two years ago and can’t figure out who the father of adorable little Brandy is, Maury will keep testing until he finds out.

Like a Kabuki dance or the Oberammagau Passion Play, each Maury set pie
ce opens with a predictable series of events, usually involving a couple and a lot of bleeped cursing and protestations of the "I'm not your baby daddy!" variety. There are two possible outcomes after Maury rips open the envelope with the test results: One is to shout “You ARE the father!,” which usually leads to a crestfallen look on the part of a young gentleman. Alternately, Maury will shout “You are NOT the father!,” which will cause the man to do a little victory jig while the woman runs screaming from the stage.

Well, no special testing required, I am he
re to report that I am a lymph node baby daddy. When I began 4 mg of Decadron (dexamethasone) to control my autoimmune hemolytic anemia on Christmas Eve, I weighed 212 pounds. A week later I was down to 202. My neck was noticeably thinner, as was my abdomen. I had lost my pregnant look.

I discussed this with my doctor, Dr. Belle, during an office visit on New Year’s Eve. (In case you hadn't notice
d by now, I like to mark every holiday with a special medical event.) It is common for people to gain weight on steroids but not to lose it, she said. Not unless there is a whole lot of CLL and attendant nonsense sloshing around in the body’s 600 or so lymph nodes.

This happened to me before, in March 2007, when I first took steroids to combat the initial attack of hemolysis that led to my diagnosis with AIHA. I was on 72 mg of methylprednisolone daily then (4 mg of Decadron is worth about 21 mg of MP) and lost 20 pounds in nine days. I was bulkier to start with and was doing Rituxan at the same time, which had a synergistic effect when it comes to cell kill. In both cases I spent the first couple of nights peeing like a horse.

* * *

My weight loss has slo
wed for now, and despite the joy of effortlessly losing ten pounds, the whole episode raises some serious questions that have bearing on my next steps in terms of therapy.

One, for example, is just how pregnant with lymph nodes am I? Do I have twins in there? Triplets? (The average baby weighs six to nine pounds at birth, so I appear to be working on a second one.)

All the usual blood-based monitoring tools -- lymphocyte count, hemoglobin, platelets, annual FISH -- give us a
glimpse into the state of our disease. But especially in “bulky”or “SLL-ey” or 11q CLL patients like me -- 11q clones love to collect in the nodes -- these tests can show us just the tip of the iceberg.

It wasn’t the visible part of the berg that sunk the Titanic, after all, and more
than one CLLer has awakened from testing complacency to find something going haywire fast. Count me as one of them. I was Coombs negative in November, resting on my RBC laurels. By Christmas Eve I was hemolyzing again. The Coombs was positive, reticulocytes were high, and haptoglobin was low. It was the pattern of 2007 repeating itself again.

During the year’s remission that I enjoyed following the completion of R-C(V)P therapy in December 2007, the disease began to return, creating the conditions of immune dysfunction that led to hemolysis again. I could see the lymph nodes in my neck slowly coming back. This was no surprise -- It’s a chronic disease, after all. That I was lulled into thinking all was well by looking at the numbers -- well, that was shortsighted.

* * *

A word is in order here about lulling. I had a very rough year in 2007. So when 2008 dawned with a pencil-thin neck, low lymphocyte count, and red cells on the rebound, I was prepared to embrace the good news. Despite my trip to the NCI to discuss a stem c
ell transplant trial, I made an effort to spend as much time as possible not thinking and worrying about CLL. Managing this disease can lead to burnout, a depletion almost as profound in its own way as the effects of leukemia upon the immune system. It did not help that I lost more friends to the disease, including a particularly good one.

And so I took a bre
ak, which gave my ever-loving and giving caregiver a break, too. I didn't look for clues. I figured no news was good news, and when I got good news on a test -- and I kept getting such news into November -- I embraced it. I knew the nodes were growing and I knew I would have to be back in this fight again, so I cherished and jealously guarded the time that I was, as they say in the military, on leave.

In the end, worrying all year probably would have made little difference to the outcome. I don't blame myself for taking some down time, especially as I was ready by dint of past experience and knowledge to jump into action immediately when needed, and especially as I have a doctor who is really and truly there when I need her. Those factors made me a little more comfortable turning my back on CLL for awhile, which means that I didn't flirt -- too much -- with danger.

* * *

In CLL, many things go on where the sun don’t shine, and this especially includes the
peritoneal (abdomonal) cavity. God knows how many more lymph node babies I have in there, gumming up the works and growing into masses that not even Decadron can flush away. It can be notoriously hard to feel these nodes, or any large abdominal mass. Marilyn once had an ovarian cyst the size of a cantaloupe that she couldn’t feel until it twisted on its axis and started to abscess.

Doctors will tell you that, especially as time goes on, CLL can change in the way it behaves and the locations it chooses to hide out in. When docs refer to "the natural history of CLL," they mean the course it takes, which can in many ways be affected by the treatment we throw at it as well as the clonal evolution of the disease itself. (Clonal evolution is what happens as more bad copies of CLL cells are made, giving rise to new groups of clones with particular properties. For example, I began my CLL career without 11q and later developed it.)

One's CLL may go from being more leukemic -- present in the blood -- to congregating where it is safest from therapy, namely the deep abdominal nodes. There is a reason this is the location where Richter’s Transfor
mation to lymphoma occurs. Not that I’m worried about that at the moment, but a constellation of such nodes provides the breeding ground for that sort of thing if sufficient T cell suppression occurs. At the very least, hidden interior bulk may be keeping my immune system so dysfunctional that the AIHA can never be put somewhat confidently to rest.

* * *

So, what to do? Well, aside from Philippine psychic surgery, there’s the CT scan, and that is what Dr. Belle and Marilyn and I have agreed to do to help us d
evelop a treatment plan. The last time I had a thorough one was at diagnosis in 2003. I'm going in tomorrow for another.

I know there are those with reservations about radiation, but the prudent use of X-Ray technology can answer some important questions. Here I am, with 11q CLL, prone to bulkiness, having lost enormous lymph node weight, having relaps
ed rather suddenly. "Don't worry about what you can't see" is a rather hollow option, even though this is often repeated to us patients, sometimes by doctors. Power, such as we have it over this disease, comes from knowledge. The Titanic had a watchman who saw the iceberg in advance, just not soon enough to avoid the damage. (For a reasoned opinion on the use of CT scans and other imaging in CLL, read Dr. Terry Hamblin's blog post entitled CT Scans.)

To develop a strategy without knowing as much as I can about the enemy is wasted effort. To do treatment and say that it’s a success because all the peripheral blood numbers look fine is also folly.

We need to see as complete a picture as possible going in. Once we have that picture, we’ll have a better idea of know how to proceed. In the meantime, the steroids are holding me, just barely. My hemoglobin has been stable, at 12.1, for the last week. I feel pretty good, despite the Decadron, which gives me a wired effect that tends to make me want to dance like one of those relieved guests on Maury.


Anonymous said...

I suspect that your unusual weight loss does, indeed, relate to loss of CLL/SLL mass.

There is a school of thought that one shouldn't undergo tests for the sake of taking them, ie, not to have tests unless decisions will be based upon their results. I don't know how your doctor will use the information derived from the CT scan, but if you've managed to avoid having one since 2003, you are truly unique and need not worry about the radiation exposure.

Using the philosophy that I wouldn't have a test that wouldn't influence my therapy, I declined to have a CT scan after my first therapy last winter. Interestingly, I had lost 16 pounds during that time some of which I attributed to loss of CLL/SLL mass from intraabdominal nodes, though a CT scan done just 3 weeks prior to the initiation of therapy only showed modest diffuse adenopathy and minimal splenomegaly.

My weight gradually increased toward it's baseline (though I never gained it back) prior to a second round of therapy this past late summer/early fall. Despite a complete absence of symptoms and an excellent appetite I again lost weight. Some of this may have been related to abstinence from my usual wine consumption, but some no doubt was related directly to the therapy...either an alteration of fat metabolism or loss of CLL/SLL mass, though the tumor burden was most likely less on this occasion. As no pre or post therapy CT scans were done, there is no way to speculate where I started and ended, though I had only mild peripheral adenopathy which resolved nicely during my therapy.

Don't forget to smile for the camera!


Anonymous said...

I, too, decided deliberately to take a 'vacation from CLL'. That lasted one blissful month. My counts were low from experimental treatment. The day before I scheduled a blood test, I went up into the Sierra Nevada, at about 7,500 feet. I hiked for about two hours uphill. I even jogged uphill with a day pack on.

Imagine my shock and disappointment that the next day my WBC went from 40,000 to 190,000 in one month.

I don't take CLL vacations anymore. I don't have that luxury any more.

Anonymous said...

It really hurts me to read what you all are going through, even though I'm a CLL'er myself. As I've reported here before, I was diagnosed stage IV over thirteen years ago (at age 50), was put into remission, went to stage IV again three years later, was put into remission and have been perfectly healthy ever since. My oncologist avoids the word "miracle," but I guess he considers me the next best thing. Other than strenuous exercise (I train and race bicycles), healthy diet, an irrational refusal to accept bad health, and a healthy dose of luck, I don't have any answers.

Sometimes when I come to this forum and read the posts, I start thinking that it's not healthy for me to do so, because maybe the less I know about this disease the better. On the other hand, I feel that maybe at times I can offer some bits of solace based on my own experience. Here's what I want to say now. The future doesn't exist, it's not real, it's not written. The most we humans can do is guess at what the future will bring, and we're usually wrong, including the experts. In fact, experts' opinions tend to be no better than everybody else's - they're just arrived at using more complicated methods.

There are no right or wrong choices when dealing with CLL. But the best choice is whatever you decide on.


Doug said...

A CT might also give you peace of mind that there's nothing else growing inside you...(the flip side is they can cause panic if they "find something", but we won't go there..)

I've had several, including a PET/CT. I think I'm on the one/year schedule, just to monitor progression or regression.

A friend of mine died of pancreatic cancer last year. Went through a year of physical therapy, acupuncture, etc. for intense lower back pain. Finally had a CT, but by then it was too advanced.

Also, weight loss (and gain) can of course be attributed to factors other than lymph nodes. I play with my weight...lost about 20 pounds after DX, some might be due to Rituxan treatment decreasing mass, but most I think was due to depression, the type of anti-depressant I take, exercise, lowering food intake, and thinking only clean thoughts....;-)Then over the past holidays I pigged out and gained 8 pounds...coming off now.

And those massive LN's I thought had in my neck when first DX'd which made me look like a chipmunk, showed up on the CT (before treatment) as "small but numerous". Small???

Bottom line: the benefits of seeing what's really going on inside you via CT, or PET/CT outweigh the dangers from radiation, in my opinion...

I hope your CT results give you some peace of mind.


Anonymous said...

I am glad that you are commenting on the blood work being only the tip of the iceberg. Dr. Keating has said that for years when explaining CLL vs SLL. Same disease? At this point they are considered to be. Same presentation? Absolutely not. I, for one, am most happy with your decision to get a CTScan. Tom has only had one and he lit up like a Christmas Tree. I find it almost humorous when I hear about the dangers of CTScans. Yes, I know, the radiation is like having tons of xrays for a broken bone. (Tons meaning I can't remember the exact number). But, this is an incurable CANCER.....I figure in the order of "pecking", cancer beats CTScan.

Let us know the second you know.
Jenny Lou

Anonymous said...

Concerns about radiation exposure are real, but usually overdone.

The average modern CT scan gives an adult 10msV of radiation. People who survived Hiroshima are thought to have been exposed to approximately 50 msV of radiation. The effect of radiation is to some extent cumulative, but Intuitively 5 CT scans over several years ought to be much less of a threat than 50 msV all at once.

I think CT scans at diagnosis and before therapeutic decisions are reasonable and helpful. The utility of CT scans in assessing therapy was a sidebar of the German CLL8 study, and their data showed that CT scans don't statistically have a meaningful impact on therapeutic decisions when patients either fail or relapse after FCR.

The true answer is unknown, but I suspect that having CT scans prior to making certain therapeutic decisions is of value. I, personally, have more of a problem with doctors who routinely do CT scans following therapy, even when they will not impact any therapeutic decision.

For example, if you've weathered a course of FCR and don't plan any intervention for at least 6 months, what's the point of having a CT scan?

Post therapy CT scans are routinely done in drug trials as a means of obtaining data, but that doesn't mean that their routine use is appropriate.

Hopefully the results of your CT scan will assist you and Dr. Belle in planning what to do next. The risk was minimal. The cost (talk about way overpriced!) is another matter.

Be well,


Sherry said...

Glad you're getting the full inspection, Dave. My hematologist, Dr. Clive Zent, once told me that trying to ascertain the amount of CLL in the body from lab results is comparable to taking a picture of the traffic on I35 and trying to estimate the population of Minneapolis. Best of luck to you!
Sherry Gardner

Anonymous said...

Happy New Year!
Have some catching up to do.

Anonymous said...

MRIs work just as well in estimating the level of disease in the lymph nodes as does a CT scan, and involves no radiation.

Of course that option might not be available in the near future depending upon the imposition of socialized medicine (Obamacare).

However, if you can get it instead of a CT scan, you probably should, in my non-medical opinion.

fran said...

I am a 56 year old female, diagnosed with CLL 3 years ago. Wow what a shock that was! Just wondering if anyone else out there is as afraid of xrays as I am,now that I have this condition. I have not had a mamogram or dental xrays in 3 years and am getting more than a little nervous. I have read that xrays are harmful and I don't need to make this any worse than it already is. Aloha

David Arenson said...


CLLers tend to focus on CLL, but I think it is wise to take care of other aspects of our health. It is certainly prudent to have a mammogram and dental X-rays -- these are not harmful and will not cause the CLL to worsen, either.

CT scans, on the other hand, involve a LOT more radiation and merit being approached with caution.

According to US News and World Report, "A typical chest CT means around a 175-times-greater dose of radiation than a similar chest X-ray — that's like 20 sets of mammograms. That range can be between 20 and 200 times higher depending on which part of the body is being scanned."

Article here:


My point is, you are at greater risk by NOT getting a mammogram or taking care of dental problems (that can lead to infections that are harder to fight in immune-compromised patients). So by all means think twice about the CT, but don't avoid the use of helpful lower-level tools that may be able to diagnose serious problems that you really need to take care of.


Anonymous said...


Thanks for sharing your insight in this blog. As a fellow young male CLLer, I find it very helpful.

Here's my favorite of your quotes on your visit to see Dr. Byrd.

"the question in CLL is not always what works best, but what, tailored to your situation, will work well enough while preserving options for the future."