Tuesday, May 12, 2009
Alternating EGCG and Curcumin - An Update
Hmmm. Easier to experiment with this than cancer vaccines or ofatumumab (Humax-20). Since I don't have a lab with a newly-minted PhD., I am restricted to trying out substances that are easily available. There are a few out there, and that's why I keep perusing the medical literature, looking for any little angle that might help slow the runaway train that is my CLL.
Well, I alternated the two drugs, changing them every 24 hours. I didn't 'wash' my cells, but I did remain hydrated, which doesn't wash cells but is important to all of us, anyway.
The results have been less than spectacular. My counts are pretty low after my four cycles of FCR, ending early because of persistent neutropenia. (The famous doctor at MD Anderson who said he could give me three years with FCR was off by about 2.8 years...)
My main gauge of success/failure of any treatment is, number one, the WBC count, and two, the size of my massive abdominal nodes. Since my counts are fairly low, I really only have my abdominal node size to go by. I sort of can tell whether things are shrinking or not by how tight my pants are.
I used to be a not-very-svelte 36 inch waist size (there was a time when a 32 waist was loose on me; I think that was the Nixon administration though). After I developed the 11q deletion after my HDMP+Rituximab (high dose steroids with high dose rituximab), my waistline started to morph out of control. After the 36 inch pants became too tight, I opted for the 38, then the 40, and then the 42. So in one year, I gained six inches in waist size without gaining an ounce of over-all weight.
Bummer!!!
Sad to say, even after about three weeks of the EGCG-curcumin-EGCG shuffle, my pants weren't a bit looser. So, I deem the effort a failure.
However, I did feel pretty good during the time, no night sweats, no hot flashes, no increase in fatigue, and my counts didn't suffer.
Why didn't I see better results? Two reasons, I think. First, I have very advanced, stage IV CLL. I've been fighting poor-prognosis CLL for over 10 years now, and I've developed, I'm sure, lots of bad chromosomal changes and increase chemo-resistance.
The second reason, probably much less important, but important nevertheless, is the abysmal bioavailability of both EGCG and curcumin. It's one thing to dump a teaspoon of pretty curcumin in a witch's brew of CLL cells; it's another to achieve an equivalent level of curcumin in one's bloodstream.
The usual trick is to take curcumin with bioperine. One must be careful not to overdo this compound. Too much apparently isn't good for you. The other thing is to dissolve the yellow, highly-stainable curcumin into warm or hot coconut milk. The high fat content of the coconut milk definitely does dissolve this spice. I also add a little bit of alcohol to help dissolve the product, usually amaretto. The latter adds a nice flavor to the concoction. Margaret swears by the C3 complex that comes from Sabinsa corporation. A number of companies use that product to make their offerings that are available retail.
The EGCG I usually use is Teavigo. This is available from a variety of suppliers; I purchase mine from The Vitamin Shoppe, which has a reasonable price for the product, and sometimes offers free shipping for a certain dollar amount of purchased product. I add another EGCG extract with a different formulation just to cover all my bases.
Both are supposedly best taken on an empty stomach. I will tell you that the EGCG is very rough on my stomach, so I do eat something perhaps fifteen minutes after swallowing the pills. It will make me throw up if I wait any longer.
My 'guru' on curcumin is Margaret, who posts on her own Multiple Myeloma blog. She's an older hand at the curcumin business, and has really benefited by using the spice. Her blog, 'Margaret's Corner', is one of the blogs listed on the right side of this blog post. She is a wealth of information on curcumin, including a section on how to get rid of curcumin stains, which I will attest gives anything you touch after you've pulled apart the capsules a very bright, vivid yellow, which will not wash out.
I was taking to wearing an old, ratty robe while making the curcumin mess. My wife gave this robe a pretty pink color after washing the formally white terry cloth with some red shirts. Now this pink robe has several splotches of screamingly yellow curcumin stains on it, that defy all attempts to remove them.
I suppose my entire digestive tract from top to bottom is now fluorescent yellow in color. I wonder if that would show up on an MRI?
Cutting healthcare costs
The track record of NICE when it comes to cancer drugs is poor. UK residents just don't have the panoply of therapies available in other countries, including the United States.
Everyone is in favor of cost-effectiveness, right? Well, if you are, remember that CLL patients are a very small lobbying group, and drugs such as Rituxan and Campath are very expensive.
If you are concerned about the treatments you will be getting in the future, pay very close attention to the details. It's one thing to say you are going to cut health care costs; it's another when the savings comes from denying care to you.
I'm reserving judgment until more is known about the president's plan. I will be seeing if health care will be changed for the worse.
(In my opinion, the best thing would be to increase spending and make a serious move to start curing cancers. Imagine how much more money cancer patients would be saving the health care system, and paying into the entire economy, if they could be free from the illness and pain of cancer!)
Sunday, May 10, 2009
Kanzius Cancer Machine is Effective Against CLL Cells
He was visiting the renowned cancer facility in order to undergo treatments for his own cancer, chronic lymphocytic leukemia (CLL). Although originally believing the cancer-killing properties of radio waves would be limited to solid tumors, Mr. Kanzius couldn't help but wonder if it could help cure his own cancer. Unfortunately, he passed away in February, 2009, as preliminary testing of his invention was underway. He always knew that it was a long-shot, but he reserved hope that he might benefit from the machine he created.
Meanwhile, research on the Kanzius invention continues. Doctors at MD Anderson, who were initially intrigued by the possibilities of marrying radio waves and nanoparticles, have made progress. The latest news released on May 8, 2009, demonstrates that the Kanzius machine can indeed kill CLL cells.
Reported by David Bruce and published on GoErie.com, the external radiofrequency generator can kill CLL cells while not significantly damaging normal cells, an important finding.
This finding was ascertained in December, 2008, using the cancerous cells of 19 CLL patients. However, the results are only a tantalizing hint at the possibilities of the machine. Dr. Steven Curly of MD Anderson, who has been spearheading the research effort, said that the CLL killing was probably due to the heating of the cells, which are tagged with gold nanoparticles, attached to a monoclonal antibody that attaches to CLL cells.
So, another step forward. According to the article, the percentage of CLL cells killed was not enumerated, so I can't tell how effective the treatment was, nor can I tell from the article how long the duration of the RF field exposure was, what antibody was used (I'm assuming a rituximab-like MoAB), or any other parameter that would be vital to know.
I've read elsewhere that theis RF generator can heat cells up to 600 degrees or so, plenty warm to kill them. Of course, non-CLL B lymphocytes express the CD20 marker, so it would seem that the machine could potentially kill every cell that carried sufficient gold nanoparticles.
Ideally, this would work as a 'super-rituximab' that, as long as a cell expressed the CD20 marker in sufficient quantities, it could be killed by the machine.
For the full news article, go to http://www.goerie.com/apps/pbcs.dll/article?AID=/20090508/NEWS02/305089932/-1/NEWS02
For more information about the Kanzius Cancer Machine, go to http://www.kanziuscancerresearch.com/
Friday, May 1, 2009
Cholesterol and CLL-How's it Going?
Believing that reducing cholesterol in my diet and reducing it further by adding a bit of fiber to my diet probably won't hurt me, I embarked about a month ago on a fiber-added diet. I must report that the results of my little experiment is inconclusive at best.
One of the 'problems' is that, at the present time, my WBC is quite low, below even the normal range due to my recent bad experience with FCR (fludarabine, cyclophosphamide, and rituximab) for my CLL. So I can't report a huge drop in the WBC numbers. I can look at the ratio of neutrophils to lymphocytes (the two largest components of the white blood count). It has bounced around, but still shows too many lymphocytes. The ratio has not changed for the better.
So, I am not bouyed by these results. I will continue to add a teaspoon a day to my diet, because I probably don't get enough fiber as it is, and adding a bit won't hurt. Didn't seem to help, don't think will hurt.
I'm thinking on embarking on a different CLL journey in the near future; alternating EGCG with curcumin. A recent paper shows that the combination seems to work better than either does alone.
More later.
Wednesday, April 29, 2009
Patgient Dies after Using Allopurinol with Treanda
http://www.bizjournals.com/philadelphia/stories/2009/04/27/daily20.html
Tuesday, April 28, 2009, 2:34pm EDT
Following patient death, Cephalon warns of using Treanda with allopurinol
Philadelphia Business Journal - by John George Staff Writer
Cephalon is updating the prescribing information for its cancer treatment drug Treanda to include a warning about the use of the drug with allopurinol, according to documents filed with the Securities and Exchange Commission on Tuesday.
According to the filing, the Frazer, Pa., biopharmaceutical company identified two cases of Stevens Johnson syndrome in patients treated with Treanda and allopurinol — one of which was fatal.
Allopurinol is used to decrease levels of uric acid in certain cancer patients.
Stevens Johnson syndrome is a rare, and potentially deadly, skin disease.
Treanda was approved last year by the Food and Drug Administration as a treatment for chronic lymphocytic leukemia and non-Hodgkin's lymphoma.
“Although the relationship between Treanda and Stevens Johnson Syndrome cannot be determined, there may be an increased risk of severe skin toxicity when Treanda and allopurinol are administered concomitantly,” Cephalon (NASDAQ: CEPH) stated in its filing, adding that allopurinal is known to cause the syndrome.
The updated prescribing information is expected to be implemented in early May, the company said.
Tuesday, April 28, 2009
Mexican Swine Flu Migrating, but seems mild
As a barometer, Google News has bumped the story from the headlines, from the sidebar, to related stories below the fold, so to speak.
I think everyone is mystified, but thankful, that the flu so far is very, very mild, except in the country in which it started.
Sunday, April 26, 2009
Updates on Mexican Flu
Over 100 people are now dead in Mexico, the apparent epicenter of the flu. No one has reportedly died in the United States, and many of the victims appear to be in their teenage years. The disease has been characterized as 'mild' in the US, with all victims apparently on the mend, or at least not getting seriously ill. Whether that continues remains to be seen. It is possible that the Mexican flu has gotten a foothold in that country, and authorities have been slow to respond, while in the US with its superb medical system, doctors have been treating appropriately, and early. The general better health of Americans may also play a part, in my opinion. The disease has seemingly been appearing (so far) only in people who have recently returned from Mexico. These people are wealthy enough to travel, and probably in good health, since sick people generally don't wish to travel.
Chronically ill people in the United States need to be hypervigilant. This means avoiding crowds, staying away from coughing and/or sneezing people, and washing their hands frequently. I personally would suggest considering not going to work tomorrow and in the next few days or weeks, especially if the Mexican flu has been detected in your city. I also suggest avoiding or limiting contact with children or teenagers in school, since that is a perfect environment in which to foster the spread of this serious disease.
I still work, and live in Sacramento California where a possible case was just discovered in a student who recently came back from a trip to Mexico. His school has been closed as a precaution. I may still go into work, since I have an office with a door that can close. I purchased a wall-mounted germ sterilizer, which I hope will help kill any viruses that sneak in under the door. If the flu seems to be spreading in Sacramento, then I will stay home. I also will discuss with my supervisor my need for precaution, and explore the possibility of working from home, something my employer has refused vehemently to date. I do have plenty of sick leave and vacation, which I will not hesitate to use.
As the old television program advised, "People, let's be safe out there".
