Saturday, March 24, 2007

A spring in my step (or the weight loss follies)

This morning’s e-mails contained a spam message titled “End the annoying obesity now.” I had to laugh, as I have just discovered my own secret to rapid weight loss, namely methylprednisolone. Maybe I should run out and patent the “CLL Miracle Diet” before some doctor -- like Tom Kipps or Januario Castro -- gets inspired by the example of Dr. Robert Atkins and decides to it.

One side effect of taking steroids can be weight loss, especially if you are a bulky CLL patient like me. My experience, dropping 20 pounds in nine days -- about 10% of my body weight -- is consistent with what has happened to some other patients I know about.

As you will recall, I began taking 72 mg of methylprednisolone (MP) daily starting March 14 for a sudden case of autoimmune hemolytic anemia (AIHA). High doses of steroids (1 mg/kg prednisone up to 2X daily) are the standard frontline treatment for AIHA -- and in my case they are working. (For those of you keeping score: My hemoglobin was up to 11.3 as of yesterday, as opposed to its nadir of 8.9 on March 14, and I am almost starting to feel normal, or as normal as I get. Hematocrit went from a low of 26.9 on March 12 to 34.8 yesterday. Haptoglobin levels, which had been as low as 10, were up into the 70s after only two days on the steroids, 34–200 being the standard range.) I expect my red counts to be normalized very soon, and one of these days I will report on my theory as to why I developed AIHA in the first place.

The AIHA reared its ugly head -- I am reminded of the old Monty Python sketch "Nobody expects the Spanish Inquisition” -- just as I was undertaking low-dose Rituxan three times a week for 12 weeks as part of a plan to deal with CLL. My hem/onc and I had planned to add some low-dose MP toward the middle of that process to squeeze CLL out of the nodes and spleen, after first getting the peripheral blood counts down. This was the plan anyway, and it was completely upended by the AIHA diagnosis. In the immortal words of my doctor, who came rushing into the infusion room with scripts in hand, “How would you like to start the steroid part early?”

This turn of events has interesting consequences for the CLL as well as the AIHA. Readers of this blog know that I have long been interested in the concept of Rituxan + HDMP (high dose methylprednisolone), the protocol that has been used successfully in chemo-naïve patients at UC San Diego (and thus the source of my reference to Drs. Kipps and Castro in the first paragraph). CLLers following this protocol also know there is debate in the medical and patient community about its advisability, with some people swearing by it and others swearing you have to be crazy to do it. My own experience with MP at much lower doses, as well as with Rituxan in combination, is giving me some interesting insights into the issue. I promise to go into them in detail.

In the interim, suffice it to say that my AIHA treatment plan has had big consequences for my CLL, which brings us back to the weight loss. As you debulk, the weight has to go somewhere. Fortunately, methylprednisolone has lympholytic activity -- that is, it kills off CLL cells -- which are passed as urine. But it is by no means a miracle worker in this department. There are three compartments where CLL hides: the lymphatic system (including spleen), the bone marrow, and the peripheral blood. Steroids push the CLL out of the first two; what isn’t killed circulates in the peripheral blood, driving the absolute lymphocyte count upwards. If you let the CLL just float there, once you have stopped the steroids it is only a matter of time -- a couple of weeks, a month -- before the white trash is back in the other compartments, making babies and cleaning up after the hurricane.

This is why my hem/onc and I will meet Monday to go over the situation; my MP dosage was cut by 50% two days ago and I will probably be off of it entirely soon. Perhaps we will consider upping the Rituxan dosages to take advantage of this window of opportunity.

Not all of the weight loss is CLL. Muscle wasting is one side effect of steroids and it appears to be part of the problem in my case. (Muscles can be built back up, so it isn’t permanent.) This is why I ended up at a General Nutrition Center store yesterday, buying one of those clown-sized jars of “the world’s most powerful weight gain formula.” High protein, low glucose, a thousand calories in every 16 delectable ounces.

Indeed, the challenge for the past week has been to eat enough calories. Like almost everyone reading this, most of my life has been spent with the opposite problem. Suddenly I find myself in a bizarro world where ingesting exessive calories is a good thing. The other day, for the first time in my life, I ate steak and eggs for breakfast, swimming in butter. It is a sad day when you troll the nutritional information sheet for Burger King looking for the highest-calorie sandwich you can find (Triple Whopper with Cheese, 1230 calories). For once I am free -- nay required -- to eat with abandon, but I have to avoid things with lots of sugar, as steroids can raise glucose levels. I have a glucose meter at home and while my levels have gotten a little high at times, they have stayed well away from the magic number of 200, which is when we radio Houston and tell them we have a problem.

So I am eating more and enjoying it less. On the plus side, I haven’t looked this trim in about 20 years. There is an opportunity here, post-steroid, to build back muscle and stay at a lower, healthier weight. And, of course, there is an opportunity here to deal with the CLL in a more meaningful way than I have in the past, since I debulked much better than I would have imagined.

In the meantime, I have a spring in my step -- both from my returning red counts and my lighter weight. Thanks to all of you who have written me with your messages of support, as well as with some invaluable advice about managing life with steroids. The one thing I keep saying about chronic lymphocytic leukemia is that we are all in this journey together, and that our caring for one another makes an incalculable difference. I have learned first-hand recently that this is true.

Now I think I'll go have lunch. Bucket of chicken, anyone?


Anonymous said...

Hi David,
I was thinking about weight gain. I have the opposite
of you:). After wine, I swear cranberry juice will make you gain, weight.Now I don't know that is healthy for
CLL folks but I know whatever is in it (probably sugar)
will throw on some pounds.Now, the sweetened kind,
not the stuff from the health food store.You could drink a lot more cranberry juice than throwing back a bunch of those Whoppers! We love BK, but my son and my FAV is ole Wendy's.
Carlin C.

Anonymous said...

I never, ever fail to gain weight by drinking egg nog. This has perenially been a problem for me during the holidays, before and after the CLL diagnosis.

Be careful to watch your over-all health. You may need to add calories, but don't overdo it. A high-fat diet can have its own consequences.

Anonymous said...

Sending best wishes and positive vibes as you head down this new road. Thanks for your continuing clarity and education at all these CLL junctions, not to mention the always delightful sprinkling of humor. I'll be watching your continuing journey with this, and I am hoping for maximum results for you.

Bob Larkin

Anonymous said...

Wow, David!! I can't believe you were able to cut your prednisone by 50% on the first whack!!

I've been on prednisone since January to treat my vasculitis, my own personal autoimmune disease. I started at 80 mg a day for nearly a month and then reduced by 20 mg each of the next two weeks. At 40 mg I was supposed to drop to 20, but I simply crashed for a couple of days, sleeping straight through. By the time I called my hem/onc he agreed to let me set my own schedule for reduction. I made good use of my 5 mg tabs and began to take it down 5 mg at a time, sometimes a week apart, sometimes longer. Today I'm at 10 mg and tomorrow I'm starting to cut the fivers in half to make it 7.5 mg. We're aiming for 5 mg eventually--I figure mid-April if I'm lucky. I'll have to continue at this dose for the rest of 2007.

There's no doubt about the miracle of steroids, but the withdrawal symptoms must be something like heroin!

Hang in there, David!!
Betty in NM

Ann said...

wow!it’s great to read articles that come directly from the heart. Thanks for sharing

Mark said...


I came across your post because we both have bulky lymph nodes: I'm chemo naive and planning to start chemo for CLL in several weeks at Sloan-Kettering. The lymph nodes in my neck are more pronounced than yours - my squirrel swallowed golf balls. My hemoglobin recently dipped below 11 after holding steady for two years in the 14 range. WBC at 16K and no 11q deletion; my karotype is normal. My onco at S/K, a member of Mark Weiss's team, is offering me PCR on a Phase II trial; I'm disinclined to participate in a Phase II without a better explanation of why that's the preferred course for me. I'm not aware of anything in PCR, from my personal investigation so far, that's optimal for reducing the size of my lymph nodes.

What I'd like to ask you initially is whether there is some accepted standard treatment when CLL is centered in the lymph nodes. My lymph nodes have grown dramatically over the last four years of W+W while my WBC has increased slowly from 11K to 16K.

Btw, I've recently entered the ravenous phase while losing weight - some of that is from switching to a more protein diet after years of vegetarianism with cheese, but I suspect most of it's coming from the CLL.

The only CLL website I've followed closely has been CLL Topics. Are there others that you would highly recommend?

Thanks for your post and helpful before and after pics.


Mark said...


I'd like to ask a further question prompted by reading more of your posts. Is there anyone out there who could serve as a medical consultant to help me weigh treatment alternatives? My full-time focus right now is on CLL self-education but I doubt that a one month focus will get me far enough.

I've enlisted C.V.'s gracious help but I'd like to be in a position to have someone on call as a member of my team. My apprehension is that oncs, even at a place like S/K, go for the most aggressive therapy and have research motivations that extend beyond individually optimized treatment.

Are there some folks I could consider as a paid CLL consultant?