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.

Life without the NFL

As the passing reader may remember, I am boycotting the NFL because they rewarded the evil dog-killer Michael Vick with millions of dollars. Business and stupid fan loyalty has allowed this to happen.

Well, I won't have any part of it.

I have avoided any television and radio broadcast of the NFL this year. Withdrawal, as you might imagine, isn't difficult, especially with the panoply of college games on the boob tube. I enjoy football, I enjoy watching the plays and the strategy unfold, and I find the college game to be more rewarding than the pro version.

For many decades, college football was the only game in town. The pro league was an afterthought watched by dozens of fans every year. I don't know why it changed; I suppose a case of severe laziness on the part of Americans. Not only can they watch college football on Saturday, but they can (if they support dog-killers) watch the pro version on Sunday, Sunday night and Monday night.

I have to confess I enjoyed watching the pro version if my team, the San Francisco 49ers, were playing. The 1980s teams with Joe Montana were almost all-consuming on Sundays. If I were going to be out of town (I used to hike on Sundays frequently), I'd tape the game, every last game.

I must say I don't miss the pro version at all. The 'crutch' of college football has helped ease my withdrawal, and, to be fair about it, the pro version only lasts five or six months of the year anyway. So I've had to suffer the withdrawal every year for six months, anyway.

And there is always baseball. Baseball is the best game to listen to on the radio. You don't have to watch the plays, since there is only one or two players involved in most plays (unlike football where there are 22 players on the field, most of the time). And baseball lasts seven months, plus there are the exhibition games when it's also fun to listen to. Baseball is kind of boring to watch on television; radio or live is the best.

All in all, let the NFL celebrate dog torturers and play with their over-paid players, over-paid coaching staff, and maniacal owners fiddle around with their delusions of grandeur. I'm not part of it, anymore.

Might a Major Development in CLL Treatment Be in Sight?

I was perusing the Web looking for interesting CLL news, when I decided to look at Dr. Kipps’ Blood Cancer Research Fund site (www.bcrf.org). The site now posts news from “Blood”, the periodical of the American Society of Hematology (www.hematology.org).

I noted an interesting editorial from Dr. Byrd on the discovery by researchers of the National Institutes of Health of a single antigen on CLL cells that may be common to all CLL cells. (An antigen is a protein that is the target of an antibody.) Dr. Byrd practically gushes with enthusiasm for the possibilities for CLL and other blood cancers from this discovery (http://bloodjournal.hematologylibrary.org/cgi/content/full/114/20/4324). In fact, his editorial is entitled, “Hunting for the Achilles’ Heel of CLL”. He terms the value of the process in identifying the antigen common to CLL cells as ‘immense’.

That sound like extremely good news!

What the researchers did was to look at people who were cured of their CLL by allogenic stem cell transplants (SCT). They then compared the blood to the patient’s blood and CLL cells that were preserved from the time before they had their transplants. (Research such as this is the reason donating blood for research is so important.)

Using sophisticated techniques, they were able to identify an antibody to an antigen that was present on the CLL cells in these patients before their transplants. The antibody wasn’t present in the patients (otherwise they presumably would have never developed CLL in the first place), but was produced from the donor’s stem cell derived B lymphocytes. It appears that, once the donor’s stem cells start producing those lymphocytes in the transplant patient, somatic hypermutation (which is the process where by all antibodies are produced by the body), starts working to produce an antibody which then starts to destroy CLL cells.

Byrd envisions development of this work to leading to therapies that may improve the curative potential of stem cell transplants. He also suggests that this may find a place in non-transplant therapies in treating CLL and other blood cancers. Avoiding the very expensive, very complex, very disruptive, and dangerous STC would be highly desirable!

Flavopiridol-Three Month Mark

On Thursday, November 12, 2009, I completed the third cycle of a planned six-cycle phase II clinical trial of Alvocidib (flavopiridol). Each cycle consists of four weeks of a one-day per week dosing, followed by a two-week 'holiday'.

As I've mentioned before, there is some thinking that as long as the drug is working, why stop it for two weeks every month? I concur with that thinking, especially if a continued pounding of CLL would conceivably result in a cure. However, flavopiridol has, per the latest published results of the trials (http://tinyurl.com/yhhp286) using the drug, only resulted in one complete remission. The over-all response rate was 53%, most of which were partial remissions. There was one complete remission in this study, which I've not read has occurred in previous studies.

And I must admit the two-week holiday is something to look forward to. It would be different if I lived in San Diego, but I don't.

My own experience is that I have responded to the drug. My main complaint prior to enrollment in the trial was large abdominal lymph nodes. I was doing my best to treat the lymph nodes with 3 mg per day of EGCG (the green tea component) and what ever else I could think of (curcumin, PEITC through watercress, vitamin D3, exercise, etc.) Eventually the lymph nodes elsewhere in my body, which had remained very quiescent, started growing.

My blood numbers have remained quite low since my sad experience with FCR, so low, in fact, that I worry I may never recover what passes for normal bone marrow function in a CLL patient.

My lymph nodes (especially abdominal) have been my greatest complaint.

After three cycles of flavopiridol, what have I learned? This is not a terribly easy drug to take, although I have learned how to mitigate many of the side effects. The first problem is the terribly ill feeling I get the evening after getting the drug. I feel very sick, very nauseated, often vomit, have persistent diarrhea, and just plain feel terrible. I have an elevated heart rate as well. It is all I can do just to get into bed and ride it out. Several times I have felt so unwell that I had to go to the emergency room.

To counter the nausea, I've insisted and insisted on adequate anti-nausea medication, which is surprisingly difficult to get. I guess everything that is given on a clinical trial has to be per the protocol, or you don't get it (exceptions of course are made; people don't die because life-savings drugs aren't on the protocol). I take ativan prior to the start of the flavopiridol, and get injectable zofran. This helps; I also have ativan and zofran to take if I feel nauseated later in the day.

The diarrhea is a problem, since I fly from San Diego back to Sacramento the day after getting the drug. After some experimentation, I use Immodium at the first sign of problems, and I take yogurt for the probiotics after I get back home. This (so far) had made the problem more mild.

The fatigue is something all CLL patients are used to; you just rest and do what you can do. It only lasts for the rest of the second day. By the third day, I'm back to the generally low-level of energy which accompanies CLL.

As I mentioned in the last post, I avoid the diarrhea-inducing medicine at all costs. Just thinking of it, or seeing the bottle, or remembering the taste makes me ill and wanting to vomit. Bleech! So I go on a low-potassium diet for three days before the treatment; this has kept my potassium level below the magic 4.0 so far. However, this is a very restrictive diet; I have created a chart of a variety of foods with their potassium levels. This means no fruits, nochocolate, no potatoes, no tomatoes, no soy, no milk, no bananas, no meats of any kind, no carrots, no raisins, no yogurt, no bran, no multi-grain breads, no nuts, no orange juice, no beans, and so on.

You are allowed white bread, white cakes, white cookies, rice krispy bars, water, oils of any kind, and small portions of cheese, iceberg lettuce, olives, pasta, and most soft drinks. But it is worth it to avoid the diarrhea-producing drug!

So, at this point, both Dr. Kipps and I are satisfied with the results. Flavopiridol can work on heavily-pretreated patients with unfavorable prognostic indicators, such as me. Thank God (and the researchers and the pharmaceutical industry)!. Otherwise, who knows where I'd be right now...

Flavopiridol

After much thought and a thorough examination of the options available to me, I decided to go with a flavopiridol trial at UC San Diego. I've been treated at UCSD before, I really like Drs. Kipps and Castro, and I can fly down there and back in a day if I can manage it.

Flavopiridol, also known as Alvocidib, is a cyclin-dependent kinase inhibitor. It has been suggested that it helps promote CLL cell apoptosis, or programmed cell death; it also slows the growth of cancerous tumors.

The drug has an interesting past. It was discovered to have a very profound CLL cell killing effect in the test tube, but when tested in humans, it seems to have no effect at all. The drug was set aside, but 'rediscovered' and looked at again. It seemed hard to believe it could blast CLL cells in the laboratory, yet do nothing in patients. Finally, they figured out that the drug would bind to human serum proteins, leaving precious little available to kill the cancer cells.

After much more experimentation, a different dosing schedule was worked out. The drug is now given in two stages, one dose to bind to the blood proteins, and another to go in an hour or so later, in hopes it will kill CLL cells.

I started on the trial in late July. The clinical trial calls for the drug to be given once a week for four weeks, then a two week 'holiday'. Theoretically, this regime could be given for up to nine months, as long as the disease doesn't progress or the side effects aren't too terrible.

(Dr. Kipps told me he doesn't understand the need for the holiday, since the drug is not myelosuppressive (i.e. it doesn't cause damage to the bone marrow or lead to depressed blood numbers)).

The first two times are down with a hospital stay. This is precautionary since there have been deaths associated with the drug. The cause of death is massive cell death, or tumor lysis syndrome. The massive cell death can dump cellular products into the blood that overwhelm the kidneys, leading to acute renal failure. It is my understanding that the first patient treated with flavopiridol died from renal failure.

The stay in the hospital allows for a quick hook-up to a dialysis machine if tumor lysis syndrome occurs. This did not happen to me. Instead, they managed the blood numbers (they primarily focus on the potassium level) by inducing diarrhea. I can attest that the drug they use to induce diarrhea works very well. I was up and down on the pot about 35 times the first stay in the hospital (my poor roommate was pretty much locked out of the bathroom).

After the first two weeks, the patient is treated in the infusion room.

So far, I've had two stints of four infusions each. The treatment has worked well; my blood numbers haven't changed much, so there is no impact there (although my blood numbers have been very low since my disastrous acquaintance with FCR). The main benefit has been in my spleen and abdominal nodes. I've had shrinkage in the massive nodes in my abdomen and in my spleen.

The main adverse side effect has been my development of a severe aversion to the diarrhea-inducing medicine. I cannot tolerate the taste, the smell, the sight or the thought of this drug, (Kayexalate). I started to get sick after taking this about the fifth time, and I ended up in the hospital vomiting for an hour or so.

What I do now (and I REALLY wish I had know this going in) is to go on a low-potassium diet on Sunday before my Wednesday infusion. If you have a level below 4.0, they won't force this vile stuff on you. So I am VERY, VERY careful to have a low potassium level before I do the flavopiridol.

It is such a negative effect that I probably would drop out of the trial.

The other thing that they didn't do is routinely treat me with anti-nausea drugs before the treatment is started. Instead, they wait until I start vomiting. Dumb! Anyway, I now take my atavin and zofran with me and take it before I start on the treatment. The last time I was down there I only vomited a couple of times.

The other really odd side effect is what happens about four hours after the treatment. I suddenly feel terribly ill, ready to go to the emergency room with a fever and general malaise. However, it passes after a half hour or and hour. However, I am ready to call 911 if I have to.

So, flavopiridol seems effective, but is not the easiest drug to take.