Thursday, February 28, 2008


A few entries back, when reporting on my bone marrow test results, I said the test did show lymphoma in the marrow. I said, "Stage 4."

That was an error. For other cancers, if this stuff is found in the bone marrow, yes, it is described at "stage 4." But for CLL (Chronic Lymphocytic Leukemia), being in the bone marrow does not constitute "stage 4."

These stages are established by the medical community as a way of establishing the degree of progress of the disease and as a guide to deciding what treatments are appropriate.

Second opinions

I was scheduled to go to the Dana Farber Institute, Boston, Mass., on March 4th. The office staff of my local oncologist navigated the paperwork through the channels of my insurance company.

The appointment is with a Dr. Eric Jacobsen. I looked him up on the Internet. Seems to be a fairly recent addition to the staff. Has had some teaching duties at Harvard. His focus seems to be on stem cell transplants. Is CLL his specialty? Doesn't say. No reason to think so.

It was in the middle of my waiting for confirmation of this appointment that I learned of What I learned there set my tired brain working on this idea: If I were to list the top five CLL specialists in the world, who would be on the list? And if I do not know whom to put on that list, who would know?

I sent an e-mail to Chaya Venkat, the creator of the clltopics Web site. Within ten minutes I had a personal reply. Utterly amazing.

So, my plan (as of Thursday night, Feb. 28) is to cancel the Dana Farber appointment, have the tests done that Dr. Terry Hamblin suggests, and then take all that data with me to whatever CLL expert I settle on, somebody on that "top 5" list.

O.K., so maybe Al Gore didn't invent the Internet. But it sure is amazing.

# # #

We report. You decide.

So much has happened since I last wrote anything for this blog, I hardly know where to start.

Some ups (relatively), some downs.

If I had to sum up what I have learned since my previous post, it would be by saying modern medicine has become like Fox News: "We report. You decide." And while I don't believe it for a minute as it relates to Fox, I DO believe it about modern day medical care.

Key West
Nancy and I had a nice three-night trip to Key West February 19-23. It was a trip we were scheduled to take last year during the same period, until we arrived at the airport ticket counter and were informed that our flight had been cancelled.

But this time we made it. Nancy had been fighting a low-grade flu or something, but gamely dragged herself through three flights to get there from here.

Going from six inches of snow to 81 degrees was pretty nice! We loved bicycling around the island and seeing all the beautiful old homes, listening to all the Jimmy Buffett wannabees in the dockside bars, and spending an afternoon on an 85-foot schooner. A visit to Ernest Hemingway’s home and to a tourist-trappy (but still very interesting) “butterfly zoo” (thousands flying all around you) rounded it out.

On third day, as we bicycled back to the guest-house apartment, I swallowed and actually yelped out loud because it hurt so much. Where did THAT come from? Nancy looked down my throat with a flashlight and said it looked like a recurrence of that Coxsackie virus: very red, white and red spots, and highly localized—just one specific spot.

Now it’s a week later, and it still hurts like holy heck. So, here is what will likely be a long string of decisions: do I go back to the doctor AGAIN? So he can tell me AGAIN it’s Coxsackie virus and there’s nothing to do but wait it out? Or is it the flu-bug that’s going around? Or both? Looks like “wait it out.”

Another CT Scan
Last week I went back for another CT scan of my neck. The idea is to see if the lymph nodes have grown any. Is it possible they have and are causing the sleep problem by crowding up against my wind pipe? The Ear, Nose, Throat doctor (oh, yeah, I saw him again, too, and after he fished a spaghetti-like scope down my nose to the base of my tongue) said, “I don’t see anything abnormal down there.” So maybe the lymph nodes are, indeed, causing it. I still don’t know. Haven’t got the new scan results back yet.

New sources of information
The Internet is an amazing thing. It truly is. I came across a Web site I had not discovered before: If anyone wants to learn the real cutting-edge, relevant facts about CLL, and read it in empathetic, yet clear language, this is it.

It is the creation of Dr. Chaya Venkat (PhD doctor of chemical engineering, I think) who seems to have been motivated by her husband’s being diagnosed with CLL. I have learned SO much from this Web site. It’s better than a doctor’s consultation, and I am not exaggerating. She’s a really good writer, and I say that as one who has made his living for much of his career as a writer and editor.

At, I have also come across the name of Dr. Terry Hamblin, in the UK. Another amazing—truly amazing—person. He is probably one of the top six experts in the world on CLL. Until I have reason to think otherwise, I would rank him number one. And—get this—he answers e-mails.

I scanned all of my test results from my original lymph-node biopsies and bone marrow samples and e-mailed them to him. I sent them all two nights ago (Feb 26). The next morning at 9 a.m., from across the ocean, I had his reply. I couldn't belive it.

Here is what he wrote:
From what I can gather from your results, your cells are CD38 negative and ZAP-70 negative. This indicates a good prognosis - in our series more than 70% of patients with this result never require treatment and no-one has died of CLL in the first 25 years follow up.
It would still be worth getting IgVH mutations done (ZAP-70 is a surrogate, but is difficult to do properly and I have seen many false positives and false negatives). Also FISH to look for abnormalities of 11q and 17p is desirable.
As far as your throat is concerned, you can't do better than an ENT opinion.
Recurrent infections are always a problem with CLL and serum Igs is the first thing to do.
Terry Hamblin

I can’t believe this man, who devoted his career to research of CLL, and as of this month is now “retired,” would lend his expertise to people like me, people simply looking for insight and perspective of what the data really means. Basically, what it means is that certain critical “indicator chromosomes” that he has researched over the years are looking pretty good, but I ought to get certain other tests done (that my oncologist has not yet ordered).

Last, I found a daily—yes daily—“list serve” that offers news and shared experiences for and from “the CLL community.” Anyone can sign up for it. Plus I have found several very well-crafted blogs by other people who are in situations similar to mine, and they all share freely what they have learned.

I am so grateful.

# # #

Thursday, February 7, 2008

Jeez, what next?

Had a sore throat the past few days. I assumed it was caused by blowing air down my throat with that darned BIPAP machine. Last night I looked into the mirror with a flashlight and looked down my throat. Yikes! Pretty ugly. Raw, red, with white spots, but only on one side of my throat.

"Looks like strep throat," Nancy said. "Better go to the doctor."

Can I get frequent flyer miles with all these doctor visits?

So I stopped there on my way to work. They took me right in. (Wow.)

"No. It's not strep throat," the doctor said. "It's Coxsackie Virus."

I knew Coxsackie, N.Y., was an ugly town, but I didn't think it capable of this.

Anyway, there's no treatment. No cure. Just ride it out and it goes away in 7 to 12 days.

It makes me wonder if working in a building with 50 or 60 home healthcare workers (St. Peter's Hospital Home Health Care occupies the first two floors) is a good idea. I never did think all these saints were to be relied upon.

Is this what a life with an impaired immune system looks like?

What to do?

It's a bit weird to have an oncologist---a doctor who specializes in cancer treatment---ask you, "What do you want to do?"

But that's what happened yesterday.

The results of the bone marrow test came back positive: yes, the lymphoma is in there, too. No surprise to me. I fully expected it, given that I figure I have had this for many months, maybe a year or more, before it was officially diagnosed. I can look back at family snapshots from last July and see the enlarged lymph nodes right in the pictures.

So, this puts the lymphoma / leukemia officially at "stage 4," to borrow the vocabulary of the cancer specialists. But still, it's the slow growing type and comparative statistics say the "doing nothing" is as good as taking aggressive action.

The alternatives? (a) chemo therapy (with all its ugly side affects); (b) monoclonal antibodies (sort of a man-made white blood cell to boost your immunity (with or without the chemo; some successes with using it alone; possible allergy to it); r (c) focus on nutrition, exercise, and sleep.

I asked for a test for H. pylori. Might as well rule it out or see if it is there. They drew a blood sample for that on the spot.

I asked for a referral back to the ear, nose, throat specialist so as to address the nighttime gagging and sleep problem. There will be no adequate sleep until that gets fixed. (See yesterday's blog entry for discussion about that!)

The oncologist suggested we get a second opinion. He will try to arrange that at the Dana Farber Institute in Boston. He asked when I would want to go. I suggested any day during The Red Sox's opening home stand.

Guess I'll go study-up on monoclonal antibodies. Sounds like it might be a real possibiity with few or no negative implications.

Wednesday, February 6, 2008

Oh for some sleep

Everything I read about dealing with CLL / SLL (lymphoma) suggests that keeping one's immune system operating at peak efficiency is critical. That is a bit difficult when one cannot sleep.

This whole process (discovering lymphoma) began with my going to a doctor to seek help in fixing a sleep problem and while the lymphoma is bad news and important, for sure, it has also been something of a diversion from addressing and solving the sleep problem.

I had gone to a sleep clinic back in November, I think it was, and it was a disaster. I thought I was going to die if I didn't rip off that air-pump mask they put on me. (So, yes, I did rip it off after about three hours.)

The gizmo was called a BIPAP machine and it is supposed to be a bit more sophisticated than a CPAP machine. CPAP just blows a steady stream of air down your throat to inflate your pipes and prevent snoring and sleep apnea. A BIPAP blows in at one pressure and lets up for exhaling . . . in theory. My major problem at the sleep clinic was that it kept shutting off my air supply half way through my inhaling. I didn't appreciate that and the attendent seemed unconcerned.

Having also arrived at the opinion that the doctor who sent me there was a quack, I decided to try to solve the problem without the BIPAP machine (and so discovered swollen lymph nodes.) And the rest, as they say, is history.

But after more and more sleepless nights, I gave in last week and decided to force myself to adapt to the BIPAP machine. I tried it out for the first time this past Sunday night. It didn't go well (same problem with it shutting me off as I tried to inhale, even after adjusting it) and in the morning I noticed I had a bit of a stomach ache. I figured it was something I had eaten Sunday.

Monday night and Tuesday morning, same deal.

Tuesday night and Wednesday morning, same deal, but worse. But I learned something over night. Around 3:00 a.m. I began feeling a stomach ache again. I reached own and rubbed my stomach and discovered it had quite literally ballooned. That doggone machine was pumping air into my stomach! (And a lot of it was trying to get out the other end of me--nasty.)

So, once again I ripped off the mask.

It set me thinking. I have felt for a long time that acid reflux (acidic vapors rising up from my stomach and escaping into my windpipe) had caused my nighttime gagging and sleep apnea. After all, acid reflux happens when "the stopper" in one's esophagus doesn't close properly and lets the gases (sometimes fluids) back up the esophagus. Or a hole in it (a hiatal hernia) lets it leak through. Some heavy duty reading of on-line medical-journal articles today confirms that this, indeed, happens.

It struck me as logical that this same hole or poorly fitting "stopper" would allow the pumped air to go back the same way, through the defect, a kind of backwards confirmation, perhaps, of the underlying problem.

So, next week it's back to the ear, nose and throat specialist for a conversation about this. Maybe I'm crazy, but it all seems logical to me.

Is this what's going on? Is it fixable? (Supposed to be.)

Stay tuned.