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

Thanksgiving is for Giving Thanks

Life is short so take advantage of every opportunity...

As I get older (and believe me, I do feel older) I am finding a lot of things to be thankful for. For those of us fighting any kind of cancer I believe this is especially important. It can be easy to focus on life not being fair, treatment being expensive, conditions getting worse, and not being able to do what we used to do. True or not, there's not much we can do about them.

My wife Carol and I have been able to spend time with all our kids and grandkids during the past several weeks--not always the same time or the same place, but together nonetheless. It was great! I encourage you to spend time with family and friends, and not just during holidays. Most of the people I know who are living with a serious disease have a very positive outlook on life. It's fun to be around them. We laugh a lot.

Our motto is: DO AS MUCH AS YOU CAN AS LONG AS YOU CAN. So far, so good. I just do it a lot slower than last year.

 I sometimes think about the good old days but as far as I'm concerned, the good days are now. If this sounds like I'm out of touch with reality, maybe so. I know I won't live forever--neither will you. However long any of us survive will probably seem better if we focus on being active and happy and not angry and miserable. Just saying.

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

Hurricane Sandy--We can Help

Whatever our personal strengths, ideas, and  challenges may be, every so often Mother Nature reminds us that we're not really in charge.

Hurricane Sandy has affected millions of people, destroyed billions in property, and changed lives forever. Why am I using my often tongue-in-cheek Prostate Cancer Blog to talk about a natural disaster? Well, I have friends and family on the east coast. My grandkids are OK and only had to survive four days without power. I feel an obligation to help. My life is good so helping someone else is a no brainer.

A small donation to the RED CROSS is a good start. It's amazingly easy.

Be generous.

axman

New Technology for Old Geezers--and Even Younger Ones

...more information sooner

Whether or not you have prostate cancer, another cancer, other health concerns, of just yearly checkups, many medical offices now have an added service.

I can get the results of most medical tests--often blood tests in my case--in just a few hours online. If you already know all about this you can stop now. In the past I sometimes had to wait a few days or even a few weeks to find out what my latest PSA, cholesterol level, liver function, or whatever the tests happened to be. That is not necessarily a major hardship and you may consider that perfectly normal. But I'm not the most patient of patients.

The procedure is quite simple. If your doctor or clinic has this service they will give you a website URL and you will sign up and set a username and password (and then try to remember them). You might even be able to access your records through your smart phone. You will probably be able to access all or most of your medical records from the past. If you don't already have this service, ask next time you go to the office or phone in and check it out.

For me this is a good thing. I like to know what condition my condition is in. This service doesn't guarantee good results but it does guarantee timely results. Just saying...

axman

My Own Personal Prostate Cancer Dream Team

A new 'super group' of oncologists have been appointed to find out why many treatments for advanced prostate cancer are not very effective and then find better ones.

Stand Up To Cancer (SU2C) and the Prostate Cancer Foundation have combined resources to fund a Dream Team of Oncologists/Scientists to study personalized treatment for advanced prostate cancer. The three-year project will receive up to 10 million dollars from the sponsoring organizations.

Six doctor/scientists were chosen to work together to identify resistance pathways in advanced prostate cancer and find new and novel ways to overcome the resistance to treatment. Four campuses of the University of California (San Francisco, Los Angeles, Santa Cruz, and Davis), the University of British Columbia, and the Oregon Health and Science University are involved. 

My oncologist, co-author, and friend Dr. Tom Beer is one of the six chosen for the project. The full title of the project is: Targeting Adaptive Pathways in Metastatic Treatment Resistant Prostate Cancer (accurate but a tongue twister). It will concentrate on men with advanced prostate cancer who have no reliable treatment options. Current standard treatments to lower testosterone levels often don’t work or they stop working over time in men with advanced prostate cancer.

The long-term goal of the project is to improve outcomes for men with advanced prostate cancer (including me and possibly you). This would include increased length of life, reduced side effects, and a better quality of life. Clinical trials are scheduled to begin in 2013. 

Concentrating on speeding up this process sounds good to me. My prostate cancer is slowly advancing like it is with thousands of other guys. Getting the best minds in oncology to work together on this project could help find useful treatments and save lives.  I certainly hope so.

axman

What Makes YOU Feel Better?

That may be a bit of a trick question—it’s often difficult to know.

Some of my days are better than others but I often don’t know why (you probably experience something similar). But there are a few things I can pinpoint that do make a difference for me.

1 It almost always helps to get enough sleep. And enough keeps becoming more.

2 Going for a walk, stacking fireplace wood, or other physical exercise almost always increases my energy level.

3 Spending time with kids and grandkids is great—most of the time.

4 Going places I haven’t been before is always a positive experience. No, I’m not talking about Emergency Hospitals or Urgent Care Centers.

5 Sunshine seems to be a major uplifting experience in my life. I love summers (when the sun shines in Oregon) and try to spend a couple of months in Arizona in the winter.

I have control over almost everything on this list. Some of these things are mostly physical (like exercise) and others are mostly emotional (like spoiling grandkids). There is probably some crossover in all of them.

How I feel doesn’t seem to have much to do with my prostate cancer treatment and medications. That’s like a separate reality. Side effects are often obvious but I consider them a trade-off for medical benefits. The drugs work on my inside and the only way I know what they’re doing is to look at my test results. Then I feel better or worse depending on the numbers and levels. Three months from now the results could be a lot different. I can’t directly control these things so I try not to think about them too much.

If you have prostate cancer or another cancer, what makes YOU feel better? Do you know why?

axman

September is National Prostate Cancer Awareness Month

Why is this important?

In the U.S. the number of men diagnosed with prostate cancer tends to keep increasing (241,000 this year) while the number of prostate cancer deaths is slightly decreasing (28,000 this year). This is not just random. Better health choices, earlier diagnosis, more treatment choices, and a series of new drugs are part of the process. About 2.5 million American men who have been diagnosed with prostate cancer are alive today (I'm one of them, thank goodness).

It all costs money, depends on new drugs, clinical trials participation, and the willingness of men to be screened. None of these factors comes easy. Men are traditionally reluctant to go to their doctor.

There are numerous organizations supporting prostate cancer patients, research, fundraising, and increasing awareness of the need for men to be screened. You can learn a lot more by checking out some of these organizations: ZERO, UsToo, Blue Cure, Prostate Cancer Foundation, National Cancer Institute, and the American Cancer Society. There are many more.

It would be great to see a cure for prostate cancer--and a lot of other cancers, too. The more we all know, the more we get involved, the more likely there will be progress in cures and finding better  treatments.

axman

A Book Signing at Powell's--It was Cool

The signing is over--it went well

We had a pretty good crowd (for a book about cancer).

Tom Beer and I discussed the book, answered questions, and signed a number of copies of Cancer Clinical Trials, at Powell's Books Cedar Hills Crossing on Wednesday, September 12. It was fun and I'm ready for the next one.

I'm not sure what all the technicalities are, but we had a screen to show slides, a microphone to share (they couldn't find another one), and enough chairs for everyone there.

Here's a photo to prove we actually signed books.

axman

More Stuff That Doesn't Help

If it sounds too good to be true...

Over the years there have been many studies and articles touting one food or vitamin as preventing or slowing prostate cancer. In many cases it later turned out that there was no benefit or even a negative relationship.

In an article by Dan Zenka, a prostate cancer survivor and VP of the Prostate Cancer Foundation, he discusses some recent studies. The article is A Fresh Look at Six PCa Myths. It is based on research gathered by the Fred Hutchinson Cancer Center in Seattle. Some of this may surprise even you long time survivors. I'm going to mention five of these myths--you can go to his article to see all six.

Some commonsense beliefs from the past--now rejected

1 Eating tomato-based products prevents prostate cancer. For years men were encouraged to eat red pasta sauce, ketchup, and other products high in lycopene. Turns out there is no association with preventing prostate cancer. So go ahead and eat your red stuff, but don't expect it to save you.

2 Having high testosterone increases your risk of prostate cancer. Nope. Testosterone levels have no association with prostate cancer risk. Numerous studies have confirmed this.

3 Omega-3 fatty acids (fish oil) decreases prostate cancer risk. Actually, high blood levels of omega-3 fatty acids increase the odds of developing high-risk prostate cancer. Fish oil has always been considered the 'safe' supplement. Go figure.

4 Vitamins and dietary supplements can prevent prostate cancer. I think most of us have heard that this wasn't necessarily true, but recent studies confirm that there is no association with prevention for most vitamins and supplements and increased risk from others. For example, vitamin E has been shown to actually increase the risk of getting prostate cancer.

5 We don't know which prostate cancers need to be treated and which need to be left alone. That was true at one time but not now. Of the more than 27 known varieties of prostate cancer, there are differences in how they should or could be treated. There are several factors to help your oncologist determine how fast or slow your prostate cancer is growing and how large and aggressive the tumor is. The PSA test is one piece of the puzzle and the biopsy tells you how big the tumor is and how fast it is growing (Gleason score). Then make sure you are a part of the decisions  made regarding treatment or active surveillance.

There are no silver bullets to protect you from prostate cancer (except maybe being born female). Being active, eating healthy foods (as best you can determine), keeping an open mind, seeing your medical team on a regular basis, and maintaining a positive attitude might help (I believe this helps me, but I could be wrong).

axman