A Season to be Thankful, Again

Not original, but from the heart…

After nearly 150 blog entries, my good intention about writing something new and creative is mostly drawing a blank. But I always write something around the holidays to highlight those things I am thankful about and for. Schmaltzy is OK when you’re an old geezer like me.

First of all, thank all of you with cancer who have volunteered for clinical trials—ever! For some there is the hope that new drug research will lead to management or cure of their cancer. For many others, it’s the hope that participation now will help those with cancer in the future—the generation of our kids or grandkids. I believe there will be breakthroughs (not too far in the future) that will finally take a big chunk out of cancer.

Personally, I continue to be one of the luckiest guys around. I feel better than I have in a few years and I’m taking advantage of better health to keep busy and enjoy life. We split our own firewood, I ran a race in November, and we mow acres of grass all summer. We are fortunate to spend time with friends, kids, and grandkids. We have four grandkids in college, one graduating from high school this year, and there’s a precocious three year old (going on 20) grandson.

Carol and I spend a lot of time laughing—mostly at ourselves for forgetting things, dropping stuff, falling asleep in front of the TV, misplacing our cell phones, and all sorts of other age-related foibles. Might as well laugh. Complaining and grumping never seemed to work so well.

Spend time with friends and family. Enjoy the holidays and every other day. Life is too short to choose to be miserable.

axman

What We can Learn from Kids

Children's cancers are treated different than adult cancers...

Cancer in children and teenagers is relatively rare, making up only about one percent of all cancer cases in the U.S. But according to the National Cancer Institute, that still means more than 12,000 children in the U.S. under the age of 15 will be diagnosed with cancer this year. Cancer is the second leading cause of death for children—after accidental injuries. During the past 20 years, the childhood cancer five-year survival rate has dramatically increased from 60 percent to more than 80 percent.

                              

Childhood cancers are usually quite different from adult cancers. They often form in parts of the body that are still growing and changing, such as the blood system, brain, nervous system, and kidneys. There is no known cause for most childhood cancers. Leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of all childhood cancers. Pediatric (childhood) cancers tend to be more aggressive than adult cancers.

So what does this have to do with prostate cancer in older men? In part it may relate to participation rates in clinical trials. In stark contrast to adult participation in clinical trials (less than five percent) well over half of all children with cancer participate in clinical trials. Improvements in treatments developed in clinical trials account for the rapid improvement in survival rates. Cancer deaths in kids have decreased dramatically in the last three decades. 

According to ASCO, the American Society of Clinical Oncology, many pediatric clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Researchers also focus on easing symptoms, reducing toxic side effects, and reducing side effects that may occur after treatment has been completed. 

Clinical trials have made a major contribution to the many advances in treating childhood cancer. Greater participation by adults in cancer clinical trials may lead to more rapid advances, too.

axman

Not Me--Just Get Some Results

Here I go again...

I read an article recently which pointed out that 20 percent of adult cancer patients in Great Britain participate in cancer clinical trials. The author was bemoaning the fact that the number wasn't higher. Most oncologists would be more than pleased with a 20 percent participation rate. We know that as many as 80 percent of young cancer patients (21 and younger) in the U.S. participate in clinical trials. But, still, only three to five percent of adults with cancer in the U.S. ever take part in a clinical trial.

I'm sure everybody who chooses not to participate has reasons that make sense to them.

A trial takes too much of my time, the distance to the trial center is too far, it probably wouldn't do me any good and I might even die sooner, I'd just be helping to make the pharmaceutical company richer, I'd be the one to get the sugar pill, and many many more beliefs and thoughts. Some of them might be accurate. Some of them merely myths.

Many trials that might possibly be beneficial are never conducted because of lack of volunteers. Others end up with unclear results because the number of participants is not large enough to conclusively prove whether or not the drug is effective or more effective than current standard treatments.

In my 10th year of prostate cancer I have a vested interest in trial results--as do 12 million other Americans with cancer. Somehow we need to make sure that everybody who could benefit, might benefit, or has no other options at least knows about clinical trial options. There are no promises and no guarantees but it might just be the best (or only) option for you.

axman

You Just Never Know What'll Happen Next

Since I was diagnosed with prostate cancer nine years ago...

I have tried to keep up with old and new treatments, support groups, and what was available and promising in clinical trials. After all, I want to survive and live the good life--and I figure the more I know the better my chances. So far, so good. And maybe someone else may benefit, too.

So several years ago I wrote a book and started this blog (you already knew that). Recently I have been fortunate enough to write another book (with my oncologist Dr. Tom Beer). It was actually published this month. Now comes the hard work--marketing and talking and social networking and all sorts of things I don't enough about. But I'd better learn.

If you're interested or even just curious, check them out at the Amazon site.

Cancer Clinical Trials and Real Men Get Prostate Cancer Too (2nd Ed.).

axman

Tapping into Your Own Immune System

Is that the best answer for incurable prostate cancer?

A rather new approach in treating prostate cancer is to use vaccines. The only prostate cancer vaccine to be approved so far is Provenge (sipuleucel-T) which was approved in 2010 to treat late stage prostate cancer and it is now being tested in trials to see if it can help at earlier stages (when your immune system is stronger).

A unique feature of vaccines is that they often use your own cancer cells to stimulate your immune system to identify and kill cancer cells. And the side effects are usually less severe than with other treatments. Cancer vaccines (immunotherapy) work much the same as the vaccines you have had for smallpox, measles, and other diseases, except it has been far more difficult with cancer. Unlike infections, which are caused by foreign organisms invading your body, cancer comes from within and therefore is much better at evading your immune system.

Some patients respond successfully to vaccines and others do not. Why that happens is still a mystery and the focus of research.

There are other vaccines being tested to find out if they might be effective in slowing or stopping prostate cancer. If you think a vaccine sounds like a good approach, here are a few names to check out at the National Cancer Institute.

·       Provenge (sipuleucel-T) already approved for late stage treatment, but new trials for earlier stage treatment use are being conducted.

·       Yervoy (ipilimumab) already approved for metastatic melanoma and in trials for prostate cancer.

·       Cabozantinib (XL184) in trials for thyroid cancer and recently for prostate cancer.

·       Dendritic Cell Vaccine Study DC/PC3 currently in phase I (safety) and phase II studies.

Progress is slow and the cost of using these vaccines has been very high. But the progress has been consistent and that’s always a good result when you’re looking for your own magic bullet or maybe just to slow down that damnable rising PSA.

axman

Some Days are “Less Better” Than Others

Or maybe it just seems that way

Is it better to know or not to know? That, of course, is part of the great PSA debate I’ve talked about before, but also a question for those of us who are five or 10 years down the prostate cancer pike.

For the past nine years I have had a PSA exam at least once every three months. After surgery it told me that they didn’t get it all. My PSA doubled every three months for the year after surgery. Then there was radiation therapy and the same thing happened. Two possible cures that weren’t...It happened and I adjusted.

Since then I have tried experimental drugs (Clinical Trial) and a bunch of hormone therapy drugs—pills and injections. My PSA has slowly gone up and slowly gone down—generally within the rather small range of 2.5 to 4.8. Not bad as far as I’m concerned. So when there was a bigger increase over a short period of time it was a bit unusual.

My last PSA jumped (almost doubled over six weeks) a bunch. It was already on the rise so I shouldn’t have been surprised (but of course I was). I know some meds work for years, some for months, and some not at all. I really did know that. I also know that there are more meds to try and surely one will bring my PSA back down and my comfort level back up.

Would I have been better off had I not known all those numbers? Would I have been more comfortable just assuming all was well? Not a chance. Ignorance is not bliss. What do you think?

axman

Marketing 101 - The Prostate Cancer Way

Crass commercialism, prostate cancer, and selling books...

In a recent blog entry I shamelessly advertised the new book, Cancer Clinical Trials. That's the book Dr. Tom Beer and I wrote.

This entry will focus on my old book (2008), Real Men Get Prostate Cancer Too. I don’t seem to be able to find enough to do in retirement, so updating the older book seems like a good thing to do. And I can avoid my wife’s “honey do” list.

By 2008 I had been living with prostate cancer for five years and had gone through a few treatments and follow-ups. Now, four years later, there have been changes in prostate cancer treatment and a lot of changes in my treatment and experiences.

My main focus in the update is to be sure all the information about prostate cancer is correct—some “facts” from 2008 are no longer considered true. New treatments and types of treatments offer more hope to more men with incurable prostate cancer. In the past four years I have participated in two clinical trials, tried several different medications, and have managed to stay alive, active, and sometimes alert. I’ll tell you here first when the new (2^nd) Edition is actually ready. I’m even adding some new (and better?) cartoons.

axman

Cancer Clinical Trials are Going to the Dogs

Can that help you? It just might!

This isn’t specifically about prostate cancer but the process might be beneficial to us PC survivors in the future as well as a lot of others with cancer. If that happens, we may be thanking Max, Queenie, or Pal.

A team of scientists at the National Cancer Institute is conducting canine cancer clinical trials. Cancer is a leading cause of death in dogs. Why is this unusual‑‑aren’t animals used to test drugs all the time?

• The dogs are family pets diagnosed with cancer by their vets and referred to the clinical trials. More than a million dogs are diagnosed with cancer every year—and that’s just in the U.S.
• Some cancers in dogs are very similar to cancers in humans.
• Experimental medicines can be started sooner than in humans, if the owners agree. And results are known sooner because cancers grow more rapidly in dogs.
• Many owners are happy to get the newest experimental treatments for their beloved pets.
• The dogs that get treatment with experimental drugs are often helped and able to live a longer and healthier life with their human families.
• Unlike many animal trials, no dogs are purposely infected. These dogs are treated after they naturally contract cancer.

Canine trials have focused on bone cancer, lymphoma, and melanoma—also common cancers in humans. These trials have the potential to help both dogs and humans—a win-win if there ever was one.

axman

Cancer Clinical Trials - the book

In just a couple of months, the book Dr. Tom Beer and I have been working on for the past two years will be published by DiaMedica Publications.

Cancer Clinical Trials is a comprehensive guide for anyone considering a Clinical Trial for any form of cancer. It is focused on the information the person with cancer needs to know in order to make the best decisions about their care and the possibilities of new and promising treatments.

It will help you understand the experimental drug approval process (that's what clinical trials are for - no new drugs can be approved without the clinical trial process).

It will tell you how clinical trials are developed and managed.

It will help you  find and enroll in a clinical trial.

It will help you decide if a clinical trial might help you.

Cancer Clinical Trials will be officially published in April, but pre-orders can happen at any time.

Check out the Publishers Website - Cancer Clinical Trials.
Check out our Facebook page .
And check out our Cancer Clinical Trials Blog.

axman
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The Cold, Cold Facts

What’s new in Prostate Cancer Treatment?

Every year or so I take another look at what’s happening (or not happening) in the prostate cancer wars. The answer (from my standpoint) in a nutshell is: not too much.

For eight years now I’ve been waiting for the next big breakthrough in prostate cancer treatment. All the ‘miracle’ cures I’ve been able to track down have proved to be less than advertised, anecdotal, unsupported, or downright fraudulent. That doesn’t mean there haven’t been improvements, new approaches, and new and better drugs (for example, keeping me alive 2.5 months longer is a step in the right direction but NOT a miracle cure in my estimation).

Genetics

Advances in the study of genetic inheritance may help in future prevention – I’m sure it will help my grandkids and their grandkids. This is a long, long term project.

Diagnosis

The PSA test is imperfect, new urine tests are being tested, biopsies in color are being developed to find cancers that don’t show up in black and white - and the controversy over testing or not testing rages on. It still seems that being diagnosed early is a good idea but there can also be a misdiagnosis and needless treatment. I am glad I was diagnosed when I was.

Vitamins

There IS such a thing as too much of a good thing. Vitamins that can help can also harm if taken in very large quantities. Diet and exercise and vitamins are good. But they aren’t a silver bullet.

Treatments

As time goes by, surgery, radiation, and other procedures become refined and more precise and do less damage to other organs and functions. This is a slow process but a good one for the men who will have these treatments in the future.

As I grow older and older I am still glad that I am getting older rather than the other dubious alternative. Maybe the big breakthrough will happen next month

axman

When the Meds Quit Working

You never know when it’s going to happen – but it will

It was a long seven years ago when I was diagnosed with prostate cancer. For the first year or two I was confident that I would be cured. My doctors were optimistic and all but guaranteed success with my prostatectomy and later with external beam radiation. But it came back. And there were no more surefire cures to try.

Next was a clinical trial – but I had to wait until my PSA was high enough to qualify – had to get unhealthier. The pill I took turned out to be about as effective as a sugar pill – but it didn’t taste as good. And my PSA just kept edging up. Five years into my cancer I started low-dose hormone pills and they kept my PSA at bay pretty well for a couple years. Now I’m taking slightly higher doses of hormones. I am happy that my PSA has been creeping up and not leaping up.

So what happens when the hormone pills don’t work any more (and that time WILL come)? I suppose I’ll get newer and more expensive meds to see if they help. Then there’s always chemo (I have too much hair anyway). With any luck I’ll keep trying newer and more exotic treatments until I’m about 90 and then somebody will finally find a cure. It could happen! The shock of that would probably give me a fatal heart attack.

axman

More About Clinical Trials

Back on April 8th I talked a little about my experience with clinical trials. I'm doing some research on who particpates in clinical trials - or more likely who is NOT participating. Fewer than 5% of those with cancer ever join a clinical trial.

Why don't people participate? Nobody knows for sure but there are some interesting survey restults. More men than women participate - a bit of a surprise because women are much more likely to seek medical treatment. About half of those doctors surveyed reported not even telling their patients about clinical trials. They cited being uncomfortable about discussing trials as a major reason. You may have to ask THEM!

Some people who know about trials opt not to participate - everybody has that choice. Some Health Insurance carriers refuse to pay for any cancer treatment if you are participating in a clinical trial. In about half of all states there are laws that now require Health Insurance carriers to pay for 'normal' treatment costs that would occur whether or not you were in a clinical trial. Medicare (if you're covered) pays for most regular treatment costs if you participate in a Clinical Trial.

Some trials have been cancelled because they couldn't get enough participants. That delays approval of potentially helpful drugs.

I definitely want any drug that might help me to be tested and approved if it actually works. So if you're so inclined and eligible - at least think about participating.

The NIH (National Institutes of Health) has a comprehensive site listing trials abailable all over the U.S. http://www.clinicaltrials.gov/ct2/results?term=cancer.

axman

What About Clinical Trials?

There are hundreds of thousands of men who have been diagnosed with prostate cancer. In many cases (like mine and maybe yours) there is no known cure. So what do you do next? Often the answer is to do nothing. That's not a very good answer.

Whatever the stage of your cancer there are probably clinical trials available that are testing new drugs or procedures. In most cases there is very little or no cost to you. But very few of us who have cancer ever participate in a clinical trial or clinical study. Why?


Maybe you don't know about the trials. Maybe your doctor recommends against them. In fact, only three to five percent of those with cancer ever participate in a clinical trial. A trial has no guarantees of success. Most trials are quite safe - the medications have been extensively tested for safety before they're ever tried on humans. But nobody knows what the ultimate results will be.

I have been in two clinical trials. Neither of them cured my prostate cancer or even slowed it down. But I'm glad I participated - I got free testing, I learned more about my own cancer, and I made contact with others going through what I was going through. And I'd participate in another if it looked promising.

Talk with your doctor and google Clinlical Trials with the name of your cancer. Find out what's available and then ask lots of questions. You have to apply and fill out endless forms, but you might get lucky and land in a study that tests the new super cancer drug. It could happen.

What is your experinece with clincial trials? What are your reservations?
axman