Thursday, February 23, 2012

Another update: Thursday, 23 Feb 12

Yesterday was kind of an encouraging day in a small way. In the morning, just after waking up, great gobs of thick, bloody mucous blew out of my sinuses (with some effort), I think in response to use of a Zycam nasal spray eight or ten hours earlier.

Then, last night, one of my ears popped open a little bit a for a couple hours after I let the hot water in the shower beat down on my bag of bones for 15 or 20 minutes. It felt weird to hear again, even if a little, and it was pretty encouraging. Bag of bones? Yeah, I have dipped as low as 165 pounds, then back to 170. In 2009, I was around 195. I decided to lose some weight, but not that much.

There is no question that the experimental drug---PCI-32765---is working. It's all the other stuff---sinus infection, extreme fatigue, a mild fever now and again, no hearing, spotty sleep---that is dragging me down still, but I am working on them with antibiotics, saline and other nasal sprays, codeine based cough medicines..... you name it.

Funny how just changing from Dayquil cough medicine to Alka Seltzer cold & flu fizzy tablets can make a difference, but yesterday it seemed to work better. I actually felt a little---and I do mean little---bit more energetic.

Farm Bureau is suggesting I apply for a disability leave. They wrote to say working from home was longer acceptable. (And in my current state, I confess I could not, anyway.) They say they want to help me apply through a company-owned disability-leave insurance policy that would pay me 60%-70% of my current salary for up to two years. It sounds like the best idea, but I will be interested to see the details. As the late Candor dairy farmer George Ace used to say, "The big print gives it all to you. The fine print takes it all away."

Sunday, February 19, 2012

PCI-32765 plus four days

I am tired, exhausted, really. If I climb the 12 steps to go upstairs, here at home, I have to sit down to rest.

I was already growing increasingly tired in recent weeks, even before getting involved with the clinical trial, but now? Hoo boy. Whether it is the 14 hours of round-trip travel to Bethesda, all the blood samples they sucked out of me, the surgeries to obtain lymph node biopsies (tougher than I would have thought; pretty sore), or the PCI-32765 drug, itself, I don't know. All I know is, I am utterly wiped out.

It would be good to know what is causing this horrendous, resonating cough (which I have now had since the end of September). My sinuses are still plugged up (sinus infections are fairly common among CLL patients) and maybe a post-nasal drip is causing the cough. The doctor at NIH (National Institute of Health) prescribed an antibiotic for it and now, four days later, not much has changed yet.

As for the PCI-32765, itself, now four days into it, I do think it is gradually reducing the swelling in my face.

Maybe my energy level will gradually rise. I do hope so. Got to be patient.

Saturday, February 11, 2012

Encouraging news

This whole process of shopping for a clinical trial reminds me of choosing and applying for admission to a college. Which is the best one for me? Will they admit me? Are all the slots filled?

As recently as ten days ago, I thought I had no options left, or only poor ones. Sort of like applying for Harvard but having to settle for an on-line course at the University of Phoenix. But maybe I got lucky.

Four days ago Nancy and I drove seven hours south to the National Institute of Health (NIH) at Bethesda, Maryland.

After sending in all my CLL-related history---pages and pages of faxed medical records---I was invited to visit NIH to see if I fit their specifications for a clinical trial evaluating an experimental drug called PCI-32765. Click here and then scroll down a bit and you'll find more than you ever wanted to know about PCI-32765 and how it works. The basics: it's not a chemotherapy. It's a daily pill and it interferes with the development of CLL. And test results so far are very encouraging, almost in the "too good to be true" category.

They stuck a bunch on needles in me---blood tests, bone marrow biopsy, CT scan, EKG---and asked me to come back next week for one more biopsy and to take the first dose of this stuff.

They tell me that by next weekend, my lymph nodes will already have shrunk dramatically. Works for me. At the moment my head is so swollen I feel like someone stuck an air hose in my ear and started pressurizing my skull. My ears are all plugged up, either from swelling or a head cold the likes of which I have never had before. Ever try to talk when under water? That's what I sound like to myself right now.

Seven hours of driving is an ordeal to get there, but it's worth it. Then I am supposed to go back once every two weeks for two months, and then maybe once or twice more in the six-month trial. For those trips, maybe I can fly down there or take the train, when I am feeling more energetic.

The staff at NIH could not have been more accommodating, more personable, better listeners, or more competent. Picture a college campus the size of Cornell and realize it's all medical. Quite amazing.

Dr. Mohammed Farooqui, the guy managing this clinical trial, impressed me very much. Susan Soto, the nurse who does all the scheduling, went out of her way to listen in an earlier phone conversation to the urgency of my situation and to make things happen without delay. She gets my number 2 Valentine's card this year, after Nancy, of course.

These next four or five days, before starting treatment, will be tough ones, as I have had to stop taking Prednisone, which was about the only thing having a beneficial effect these past few weeks, keeping the swelling in check at least somewhat. Since stopping it, the swelling has been going crazy.

Four days. Just four more days.

Friday, February 3, 2012

The way it is

It has been a long time since I posted anything here. I didn't want to freak-out Nancy with the "inconvenient truth." But it seems we are past that point now.

The inconvenient truth is that if you flunk your first round of chemotherapy---especially if it is a chemo that is considered to be the gold standard of chemotherapies---you are, statistically speaking, "up the creek."

So, for the past year or so, I have been shopping for a paddle---in the form of a clinical trial.

My local oncologist had been recommending for months (maybe a year) that I do a second round of chemo, this time with a combination of Bendamustine and Rituxan. I have resisted. I do not like what I read about the history of Bendamustine and the data upon which its official approval as a lymphoma treatment was based---that the trials were arranged to make it look better than it really is. Nor am I encouraged by an Italian survey of Bendamustine users that turned up the detail that 67% of them were dead within two years. That doesn't sound like success to me.

I went to Memorial Sloan Kettering Cancer Center in New York City to discuss with Dr. Jae Park his clinical trial with Revlamid (lenolidamide)---a variation on the old thalidomide. It sounded pretty promising. I went back to Mayo Clinic in Minnesota in early December and met again with Dr. Timothy Call, who recommended a clinical trial with a new experimental drug called PCI-32765, and upon my return began looking on the Internet for one. I also visited Dr. Jennifer Brown at the Dana Farber Cancer Center in Boston. I am impressed with all three of these CL specialists.

A visit to turned up several PCI clinical trials that were apparently available, but direct contact with the listed hospitals revealed that most actually were not available any more.

I'll spare you the crazy details of how some hospitals/clinical trials seem to do a "bait and switch" ("Sure come on down for an appointment," and then when you get there, they tell you, "Oh, that trial you've been asking us about for two weeks actually isn't available any more, but we have this other trial.")

I can say with some great relief that I was recently notified that I have been accepted for a PCI trial at the National Institute of Health. It has been so difficult to find one that suits my circumstances, that is (was) still open, and that also will accept me that I am almost afraid to jinx it by saying "I'm in." But unless they pull the rug out from under me in the next two days, Nancy and I will be traveling to Bethesda, MD, next Tuesday to get me started.

PCI-32765 differs from chemotherapy in two major ways: (1) it's a pill, not done intravenously; and (2) it (reportedly) doesn't blast away your immune system in the war against excess white blood cells. To over-simplify, it seeks to halt or regulate the production of CLL cells.

I am pretty sure the next six months won't be a "walk in the park." Undoubtedly there are risks. But it's time to get moving on this.