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: http://www.clltopics.org/. 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 http://www.clltopics.com/, 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.
# # #
