Cruise Control

I went down to Stanford last week for my latest appointment with Dr. Coutre.  The lab numbers were not in yet (even though I got there over an hour early!), so I don't know how the lab is going to assess my progress or lack thereof.  (Is it progress if the numbers progress to a worse level, or is it progress if my counts are stable and/or improved.  I vote for the latter.)

From a purely subjective standpoint, I feel fine and am able to do pretty much what I want physically.  I think it has taken me about six months to pretty much fully recover from my hospital stays.  That's a long time, and thinking back, I was pretty much wiped out in January and February.  I couldn't drive, I couldn't make it to the end of the street even with a cane.  Now I am driving to Stanford and elsewhere, I did some roof repairs that necessitated me carrying shingles up the ladder, and ripping off damaged shingles, and even using new plywood to replaced some damaged sections.  (The whole problem started unnoticed some time ago when I lost a single shingle to a wind storm, and didn't notice it.)

My attitude to the lack of numbers from Stanford is that since I've not heard from Dr. Coutre, all's pretty much well.  At least I like to think so.  I see him in a month.  I'll repeat my scans in December or January.

In addition, I'll see Dr. Kipps next month in San Diego.  I'll get to fly the no-frills Southwest, which has the only non-stop from Sacramento to San Diego.  I hope things go well there.  Dr. Kipps is more of a worrier than Dr. Coutre, so I expect a somber analysis from Kipps.  But I will get to pump him on new treatments.  Of course the one trial I'm interested in apart from CAL-101/GS-1101 is a trial educating the T-lymphocytes to attack and destroy CLL cells.  A cure would be very, very nice.  To get back to the business of living without having to worry about my immune system.

Perhaps an impossible dream for me, but one can only hope, can't one?

Two Weeks Off!

The clinical trial protocol of flavopiridol (Alvocidib) is a long one, with the full course lasting nine months. (I started in late July and if all goes well, I'll have my last infusion the end of March, 2010.) It consists of six cycles of four weekly infusions, followed by a two week 'holiday'. It has been suggested that the infusions should just run continuously so that the drug can work continously to kill CLL cells, but the trial protocol is set up with the two-week break.

Being the patient, I can say that I will not protest too much that I get a two-week break. Part of the procedure using flavopiridol is that one cannot have too high of a potassium level. I've discussed this before, but the dying CLL cells dump the cell contents in the blood, and this can cause acute renal failure which has been fatal in at least one patient in the phase I component of the study. Starting off with a low normal level of potassium (3.9 or thereabouts) means that there is room to go up without doing anything drastic in terms of managing the potassium level.

So, I try to manage this by drinking lots of water spaced throughout the three days before going down to San Diego for the next infusion. (There is a danger of drinking too much all at one time. Search on 'water intoxication.') I also go on a low potassium diet, which I have devised. This is basically a 'white' diet consisting of white bread, white cake, white cookies, muffins, etc. Few vegetables and no meats are low in potassium. Also, no chocolate. The 'diet' is more comprehensive, of course. And, of course, don't do anything without checking with your doctor as I have.

This means that my diet is severely restricted for the Sunday, Monday and Tuesday before the Wednesday infusion. (I fast on the day of the infusion because anything I eat will just come up later. And I will have an aversion to that food for a long time. As it is now, the thought of raspberry juice is revolting, since I used to buy a raspberry Snapple and wash down pills with that. Bleech! Sorry, Snapple.)

So...I can have a normal diet for Friday and Saturday. Only two days a week. Of course, things could be a lot worse.

Anyway...I had a wonderful two-week break the last two weeks of November. This included Thanksgiving. My wife is a great cook and we had a turkey breast (thank you mister or miss turkey for giving up your life for my meal) with the usual fixings. I had Thanksgiving and the day after off from work, so my wife and I spent one day up in the foothills of the Sierra poking around various antique shops.

We try to do two trips a year in Amador City and Sutter Creek. These two are delightful towns that are only 30 miles from Sacramento, but with a totally different feeling. It's a beautiful drive up highway 16 east of Sacramento, then south on highway 49. It's especially pretty in the fall with the changing leaves on the trees, the cold air, the wood smoke in the air, and the happy tourists clogging the streets.

We spent the day looking at and for various fun things to look at or to buy. Sutter Creek has a crafts fair most weekends from Thanksgiving to Christmas. Both towns have some unique shops that carry things you don't ordinarily find. My wife's favorite shop is in Amador City, and features antique lace. Now, as a guy, I don't know why anyone would want to wear 100-year-old fabric, but my wife puts together some attractive looks mixing old lace and modern clothes.

It may not be the best way to administer the flavopiridol, but having a two-week break from the tedium of flying to and from San Diego, and spending the day in the infusion room isn't all bad from my point of view!

I'm more than halfway through the regime. So far, it has been working pretty well.

I saw an oncologist at UC Davis regarding the FCR+Lumiliximab trial (a word she cannot pronounce accurately). This is the same trial which was offered (recommended?) to me by Dr. Kipps. However, Dr. Hamblin calls this trial just a 'marketing scheme,' a phrase that I don't understand. I'll have to write him and ask him to explain.

I don't want to use fludarabine, of course, since it is linked to significant T cell suppression, secondary malignancies, premature death and a whole host of other problems. Once you are refractory to fludarabine (and you will become refractory), then they are no real options left for you; make sure your affairs are in order!

I was more interested in the lumiliximab trial (which is a randomized phase II trial, somewhat rare) as offered by UCD over that of UCSD, since the trial at UCD offers the option of MRIs instead of CT scans. Funny that the same company would have different protocols for different institutions. I did e-mail the company complaining that MRIs would be just as effective as CT scans at tracking the disease. The company MD who replied to me said it would be up to the trial administrator. However, the written protocol is different for the two institutions.

I'll keep this blog posted as to what happens.