Tom - Tom Terrific

April 25, 2010:

I am half way through my radiation treatments and so far so good. Thanks to all those who have helped in giving me rides to the Cancer Clinic in South Sacramento and to those who have brought dinners by the house, and to everyone for all the moral, spiritual and just the positive good feelings kind of support I and my family have received. Believe me, it really does help.

So, let me bring you all up-to-date on the latest news. I had been accepted into a Clinical Trial Program through Kaiser. I had up until this week to make my final decision about participating in it, and based on my research, second opinion from UCSF Dr. Butowski and a cautious but common sense approach, I decided not to participate. However, as you all know, or should know by now, my prognosis is not exactly uplifting. In fact it is pretty much a statistical given that I will not be around, in the earthly sense, beyond a year or two. So part of my decision had to deal with how much good could I do for others. Could my participation lead to advances that may someday lead to better treatments, more effective medications and perhaps an actual cure for this type of cancer. Weigh all that against my selfish desire to avoid the slim possibility of suffering the side effect that could occur should I partake in the Clinical Trial and you see the dilemma I had to deal with.

I guess I should briefly try and explain the Clinical Trial. First I would continue with the radiation and Chemo using "Tamador". But, starting next week I would then be given an additional drug called "Avastin". This drug has already been approved by the FDA as a second line defense (if the tumor recurs) but now it is being tested for its efficacy as a first line drug treatment to be added to the usual "Tamador". Here is what Avastin does: It reduces the production of capillaries. A glioblastoma tumor creates capillaries in order to feed on the blood produced. So, by slowing the production of this process the tumor is deprived of its source of energy/food and will not grow. There are several problems. First the effectiveness of this treatment for glioblastomas is not that great. Second, since you have fewer blood vessels through which the same amount of blood must travel, your blood pressure must be carefully monitored. And perhaps of most significance to me, there is a risk of hemorrhaging in the brain. And, should I begin to hemorrhage, I would die. No ifs ands or buts. There is nothing anyone could do; I would die. Dr. Butowski was adamant in his opposition to my participation in this trial. Based on his assessment of my MRIs and medical records, his position was that I was not likely to develop a tumor immediately and could always use the Avastin if and when one developed later, but why take the risk, however low it may be, of hemorrhaging now. Then there was the double blind tests involved where 50% of those in the trial would receive a placebo. He felt this was not right and close to unethical and told us that UCSF had stopped participating in these types of trials quite a few years ago. I wanted out of the Clinical Trial. I wanted to survive, and who knows, I might be one of those rare individuals who actually does survive for 5, 10, 15 or more years. But, as I mentioned above, I was also in a unique position; I was given this disease that few others receive; It is almost always fatal and I could use my condition to be of help to those in the future who unfortunately develop this form of cancer. What to do?

Along comes "NOVOCURE". I found this on the internet. (They tell us not to use the internet, probably because it would scare us.) So, let me describe it to you all as I did to my oncologist. It is a device that consists of something resembling a bathing cap. There are numerous wires that are attached to, I believe four pads, then the pads are attached to the scalp and kept in place by the cap. The wires lead to a battery that I will carry in either a purse or in a backpack. An electrical charge is sent through the wires, creating some sort of low voltage electrical force field that identifies only cancer cells and then Zaps them, dead. This device is in clinical trials and seems to have a very high success rate. (Now the Tom Terrific Cartoon above makes sense, right?)

My oncologist rolled his eyes, I think said something about tinfoil hats and that it could not be in Phase III Clinical Trials because that is the last phase before approval by the FDA and it involves large groups and, and, and it just couldn't be. I asked him please go onto the internet and look up NovoCure and see if I'm being misled somehow. The next week, I asked him if he looked it up. His response was that he, not I, was wrong. I gained an enormous amount of respect for him at this point. He admitted he was wrong, but he also admitted he was ignorant of an advanced procedure in his field of medicine. And that it had sparked a curiosity in him about this device. Not only was it in a Phase III Clinical Trial, but the doctors who were involved were all legit, on top of their analytical research, were not trying to deceive anyone and the project was being backed by some of the largest and most prominent drug and cancer research companies around. I immediately went looking for the trials. Supposedly, as with anything successful in cancer research, the trials were only being conducted in Europe. Nora and I discussed this and we figured we would, somehow, find a way to get there. But, I later found out that Phase III trials were going to be starting in the United States in April of this year. I went to "NovoCureTrials" on the internet and located the two hospitals in California that would be participating; University of Southern California and The University of California San Diego. (I know, I know, these are just low budget unknown medical clinics just a notch up from that place just around the corner in Tijuana.) I, as quickly as possible, sent e-mails off to these folks, who each replied within a matter of minutes. As it now stands, I am registering as a patient in one of the two hospitals and will, upon completion of my radiation, travel down to southern California for a week of testing and training and then I'll come back and administer the apparatus myself. I will have to go back each month for additional testing and monitoring and will do this for the next two years. This is so much better than taking a drug that may kill me. And, I still may be helping people in the future; Most of all, this may help me to be around to see my grandkids grow up, see my children through college and spend at least a few more years with Nora. Will it work? The success rate is very promising. Side effects? Can't think of any, other than some skin irritation. Will I look funny? Only to the ignorant.

Well, that is the update. I am determined as ever to survive and I look forward to working with this NovoCure device. I WILL BEAT THIS. Lenny