Saturday, July 30, 2011

Here we go again

I have occasionally written here that "no news is good news." Well, maybe that hasn't been quite true. No news can also mean something weird is going on inside me and I see no point in writing about it until I know what I am talking about---more or less.

That is the case now.

And, by the way, I write all this detail that follows not to "over-share" with concerned friends and family members, but to be of some small service perhaps to fellow patients, some of whom have been so very helpful to me in recent years and months. I have learned so much from them.

Somewhere around August of 2010 I began to have suspicions that my face was swelling up again, a pretty sure sign that the CLL was making a comeback---despite having completed FCR chemo treatment only five months earlier. (It's not uncommon for such "first line" treatment to achieve something resembling remission for five years or more.) But the swelling wasn't the classic CLL sort, it seemed to me. Rather than the distinct, hardened little marbles of lymph node that begin to swell beneath the skin, this was a diffuse, generalized swelling of what I call "flat tissue." It was appearing in both cheeks and both temples, in one armpit (which was more node-like) and, much more annoying, inside my throat, causing a return of the nighttime gagging that has robbed me of countless hours of sleep over the past few years. It also was growing inward from my cheeks towards my teeth, making it awkward (at first) and painful (later) to chew.

Some correspondence with Dr. Terry Hamblin in the UK brought this reply: "I wonder if something else isn't going on here." He suggested the possibility of "urticaria," a doctor's five-syllable word for "hives." Further reading brought me to a self-diagnosis of "angioedema," which is the same as hives but in deeper tissue, not at the surface. And in fact, angioedema is, in rare cases, caused by CLL. It is as though the body has an allergic reaction to CLL.

Dr. Hamblin suggested trying a regimen of doxepin for the angioedema and a local immunologist humored me by prescribing it. Nice try. But it did nothing to reduce swelling.

My family practice doctor was persuaded to let me try a regimen of steroids (prednisone). The reduction in swelling was dramatic and immediate, as was the rebound of swelling as soon as the nine-day regimen ended. But since continual use of prednisone is a bad idea, it was no long term solution to my swelling problem.

A blood test on July 1, compared to April's, showed that my white blood cell count was moving up again and at an escalating rate. By mid July, the nightime gagging was preventing sleep no matter what contorted angle I might twist myself into at night. I was consistently biting the inside of my mouth as I ate. Pressure was pushing into my ears and squeezing tears (physical pressure, not emotional) out of my eyes all day. Not to mention looking pretty weird. I felt dull-witted, groggy, and very tired.

The upshot? Yesterday (Friday, July 29) I started a new round of chemo: Rituxan plus the usual augmentation with steroids. Next Friday I do it again, perhaps with Bendamustine added-in. That decision hasn't been made yet. I was leaning toward not adding it, but blood tests are suggesting that I need to deal with the bone marrow, not just the swelling, itself, so maybe it will be the better decision. That decision will likely be made at an appointment this coming Thursday,

Update, Sunday 31 July: I feel better than I have in months. More energy, clearer-headed. Great day kayaking on the Mohawk River. No wonder athletes like steroids! But, more important, the swelling is noticeably in retreat.

How long will it last this time?

I can only hope.