Saturday, March 31, 2007

Debulking: the amazing photographic evidence

I mentioned recently the rather astonishing debulking effect that methylprednisolone -- being used to treat autoimmune hemolytic anemia -- has had on my chronic lymphocytic leukemia. Sometimes a picture is worth a thousand words, so I am posting two pictures today in lieu of writing 2,000 words.

The top photo is me on February 7, before the AIHA came calling and any treatment was done. Someone was kind enough to say that my thick neck made it look like I had been working out, but the only workout was being done by the CLL, which was ever expanding itself into lymph node masses.

The second photo was taken March 25, a little more than a week after starting treatment with 72 mg of methylprednisolone for the AIHA (and also 20 mg/m2 of low-dose Rituxan three times a week). Who is that man with the neck?

Now, imagine that sort of lymph node impaction throughout my abdomen -- I have no doubt that the bothersome pelvic nodes I have written about in the past were in a similar mass -- and you know why I slimmed down there, too, and no longer need my "maternity clothes." Altogether, I have lost 22 pounds since starting the steroids, which are now tapered to 16 mg daily. (As to the AIHA, I am doing OK but the red counts are still not normalized.)

I hope these photos show what unmutated, 11q-deleted clones of "the good cancer" can do. Often we patients get used to a slow change in our appearance and forget what we looked like before the lymph nodes began to swell. And while this shows what the CLL visibly did, another big part of the story is what it did that I couldn't see -- compromised my immune function, allowing something, probably an infection, to trigger the AIHA.

By the way, I made this note to myself on the third day of methylprednisolone therapy: "After two days of steroid, nodes reduced to about the least since initial (Rituxan) treatment three years ago. Six pounds lost." In other words, the debulking occurred substantially within the first few days of steroid therapy. Today, only two palpable, almond-sized lymph nodes remain in the fleshy area under my jawline, both vastly reduced from before.

The challenge ahead, after recovering fully from the AIHA, is to maintain my slimmer physique by good diet and exercise and to keep the CLL at bay. Seeing the massive bulk that was built up in me, and coping with the hidden consequences of the disease running amok which suddenly came to the fore as AIHA, has caused me to do a little thinking about the possibility of using something a little stronger to solidify my remission.

In the meantime, here are the photos, before and after:


Steve Madden said...

The thought of all those CLL cells fleeing your nodes to end up flushed to a place they really belong (I will remain polite) is making me do a huge happy dance. :)

Anonymous said...

That is AMAZING! The photos I mean!
Keep gettin' on!

Jenny Lou said...

Since Tom is on camera, he really couldn't watch and wait when his nodes were so big. We both didn't realize how large they had become though. Same thing with you. Tom looked so skinny after FCR....we were happy campers. Dr. Keating once said that emotionally it is bad to look in the mirror everyday and "see CLL". I agree with him. Once the nodes are reduced, a sort of positivity sets in to help fight this cancer. You look super fine Dude.

Anonymous said...

Several people on the acor list have mentioned large nodes, including Joe Tullman (do you remember him?). The 11q del is not as serious as 17p del, but the bulky nodes are definitely a concern.

Luckily, there are steroids and a number of other drugs that work on bulky nodes.

Please keep us informed as to your thinking regarding further treatment.

Marc said...

Are you still taking the low dose rituxan? If not how long were you taking it?

Anonymous said...

Interesting that you seem to be taking a low-dose steroid. There is news today that low-dose steroids in multiple myeloma combinded with lenalidomide (the thalidomide derivitive) leads to prolonged survival compared with high-dose steroids.

David Arenson said...

I am still on low-dose Rituxan, 20 mg/m2, every Monday, Wednesday, and Friday. WBC yesterday was 84,000, droppping 11,000 from two days before. Assuming this rate of reduction continues -- a BIG assumption -- it will take another seven or eight infusions to get me to normal WBC, if that is in the cards. The original plan was to do it for 12 weeks, and I began March 12.

I definitely think there may be a role for lower-dose steroids in some patients, combined with low-dose Rituxan. 72 mg of methylprednisolone is not really low-dose, by the way. It just seems so in comparison to the 1 gm/m2 used at UCSD. I am now stepped down to 12 mg daily, which is fine with me -- enough to keep the nodes at bay while the Rituxan does its thing.

Yes, I do remember Joe Tullman and his reports of increasing his shirt collar size as the nodes grew. Fortunately, I don't have to wear a tie to work (I work at home). Heck, I don't even have to wear pants.

I think one especially valuable thing about low-dose Rituxan is this: with CLL cells flushed out of nodes, spleen and marrow into the peripheral blood for the first time, they are virgin targets for Rituxan. It makes sense that we avoid CD 20 shaving here, as we want to get the maximum kill and avoid shaved cells getting back into the nodes and becoming that much more resistant to Rituxan treatment. Yes, I know CD 20 is supposed to "grow back," as it were, but I don't think that issue has been studied enough to know the extent to which it returns. So why take chances with shaving.

Anonymous said...

FYI, I believe there is a clinical trial on the 'shaving' phenomenon with Rituxan. That should settle the dispute once and for all. There are arguments on both sides.

David Arenson said...

There is indeed a clinical trial using low-dose Rituxan (20 mg) in patients, and there had been a pilot study before that. Here is a link to the trial:

I think the shaving effect has pretty much been demonstrated; the question is, how well will low-dose Rituxan work in patients. That is the bottom line.

The pilot study had encouraging results. Here are links to two abstracts: