Last Minute Donations to CLL Charities

Nothing like waiting to the last minute!

If you want to make some 2009 donations to further the cause of CLL research, please consider the following organizations:

Perhaps you remember the research effort into finding the antibody which may wipe out all CLL cells? That effort excited Dr. Byrd at Ohio State and a CLL guru. The sooner we get this in trials, the better. The address for donations is:

The National Cancer Institute Gift Fund, Building 31/Room 11A-16, 9000 Rockville Pike, Bethesda , MD 20892 . The check should be made out to the National Cancer Institute and the cover letter should request that the donation be used to support translational CLL research such as that conducted by my laboratory.


The other organizations that help support CLL research include Dr. Kipps' Blood Research Fund:

https://www-er.ucsd.edu/givetoucsd/secure/paymenttran/onlinegiving.asp?sk=42


Dr. Keating's CLL research fund is at:

http://www.cllglobal.org/donate.htm


The Kanzius machine that may help treat CLL is being tested at MD Anderson. It uses nanoparticles to attach to CLL cells; heat is then applied body-wide to destroy the cells.

http://www.kanziuscancerresearch.com/supportthiscause-p-163.html


PLEASE PLEASE PLEASE donate to destroy CLL. We need a cure NOW!

And, please all of you one or two people reading this, have a safe and healthy New Years Eve and the same for all of 2010. May this be the year CLL is cured.

A belated "Merry Christmas"

I was too sick yesterday to get on the 'net and post here, but a belated Merry Christmas to all!

I am having continuing problems with my gut, bloating, gas, etc. etc. I don't know whether I have an infection or this is the result of the Alvocidib (flavopiridol). I am going to the urgent care clinic to find out this morning. It is troubling and very painful.

Be well, all.

The Most Common Leukemia?

For many years, CLL has ‘reigned’ with the title of ‘most common leukemia in the Western world.’ That title may be in jeapordy, though, if recent trends continue. Already some say that the title has already fallen to another contender. What is this mystery leukemia that seemingly has come out of nowhere to grab the crown? Myelodysplastic syndrome, or MDS.

Perusing the ASH abstracts, a number of papers caught my eye, including this one: http://ash.confex.com/ash/2009/webprogram/Paper19496.html. The authors say that “Myelodysplastic syndromes (MDS) are becoming the most commonly diagnosed forms of leukemia in the US .” Also, consider this very interesting paper that asserts that MDS may be afflicting over a hundred thousand Americans: http://www.moffitt.org/CCJRoot/v16s4/pdf/2.pdf

One reason MDS might be increasing in frequency is that it can arise as a result of chemotherapy for other cancers, including fludarabine-containing regimes such as FCR for CLL. As cancer patients live longer (always a good thing, of course) other cancers will make their presence known, unfortunately.

San Diego Water Is Bad- Here's Confirmation

I have gone to San Diego many times for treatment. I try to keep hydrated to help flush toxic materials produced from the treatment.

It's difficult in San Diego, because the water is the worst-tasting water I can remember ever trying to drink. Bleech!

I have been thinking about taking some flavored powder to add to the water. I know the importance of staying hydrated, and any help killing the taste would be welcomed.

This is from Yahoo.com
(http://green.yahoo.com/blog/the_conscious_consumer/110/cities-with-best-and-worst-tap-water.html)

Cities with best and worst tap water

By Lori Bongiorno
Posted Sat Dec 12, 2009 10:55am PST

More from The Conscious Consumer blog


How safe is the water that flows out of your tap? The answer very much depends on where you live.

It's now easier than ever for consumers to find out what's in their tap water. The Environmental Working Group (EWG) today released the results of a three-year investigation of municipal water supplies across the U.S.

The research and advocacy group looked at water quality tests performed by water utilities since 2004 and created an extensive database that contains info on the contaminants found in 48,000 communities in 45 states.

EWG also rated 100 big city (population over 250,000) water utilities. Below are the top and bottom results.


Cities with the worst water:

1. Pensacola, FL
2. Riverside, CA
3. Las Vegas, NV
4. Riverside County, CA
5. Reno, NV
6. Houston, TX
7. Omaha, NE
8. North Las Vegas, NV
9. San Diego, CA
10. Jacksonville, FL


The article suggests the water isn't particularly safe. I don't know about that, but I can tell you the water just tastes terrible.

Platelet Numbers Increasing

I've had CLL since October, 1998. I 'celebrated' my anniversary this last October by doing nothing, since being diagnosed with a terrible, incurable disease which will likely take my life is nothing to celebrate. Curse, maybe, but not celebrate.

As my rare reader probably knows, I started on a phase II clinical trial of Alvocidib (flavopiridol) in late July. I'm a bit more than half-way through the trial, which, if I make it that far, will last nine months and end in the latter part of March, 2010. (An aside: I wonder if this change in the year will FINALLY cause people to stop saying the year in the most ridiculous manner possible, i.e. two thousand and nine instead of the proper, twenty-oh-nine. Correct me if I'm wrong, but did we say, for example, 1998 as one thousand, nine hundred and ninety eight? I don't think so...)

I get a weekly blood draw; when I'm in San Diego, it's through my port, when on my infrequent trial holidays, it's through the veins in my arm here in Sacramento. I noted a trend about a month ago that my platelets were up a bit. I've been running below normal in my platelets since about 2003. Nothing major, but they've oscillated up and down between 55 and 95, usually hanging out around 70-80. My count on October 9, 2009, for example, was 82. This is not a dangerous place to be, but I don't go skydiving or race cars as I don't what a subdural bleed. No siree!

The last three blood tests in November, the last two done here in Sacramento, show the improvement continues. My 11-12 test shows my platelets were at 95. On 11-18, they topped 100 for the first time in many years at 101. My November 25 blood draw had the platelet numbers at 134, the first time it has been in the normal range, as I've said, in many years.

I can only guess this is the doing of the flavopiridol. None of the other treatments that I can recall worked so well on platelets.

Obviously, I'm pleased.

And while this happy situation won't last forever, and my number will likely slink back to the less happy situation of low platelets and increasing tumor burden, today, I will make the most of it. I was thinking that I don't have to have any real worries about shaving, getting cut, having nosebleeds, bleeding profusely at the slightest nick, and so on. I might even take a fish oil tablet for the heck of it, since heart disease runs in the family, and I now have enough platelets to clog an artery or two.

The other numbers are still in the abnormal range, though the hemoglobin has been above 10.0 for over quite a while, at least out of the danger range for well over a year (I've had to have blood transfusions on a number of occasions - thank you blood donors!!!).

So the platelet counts are fab, and I'm thankful for that. I still have CLL cells everywhere, but they have been beaten back for the time being. And in spite of those bureaucrats, especially in socialized medicine England, who say six months of extra life if just no big deal, I will tell you that my decent health since I've started flavopiridol is priceless to me.

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.