How Your Mind Can Play Tricks on You

At least mine does—all the time

For almost nine years I have dutifully gone to see my oncologist every three months to assess my prostate cancer condition. And I always experience a little dread (maybe my PSA has gone hog wild—hasn’t happened so far) but there is also that glimmer of hope that it has gone to zero and I’ll live happily ever after (of course that hasn’t happened either).

The PSA isn’t even all that accurate, but for those of us with ongoing prostate cancer, it’s the best measure we currently have. The week before the oncologist appointment there are blood tests and sometimes other tests as well. No problem. It’s finding out the results that’s brings on the anxiety. In my case, my blood pressure spikes every time.

Worse yet, many of us guys (including me) probably put too much stock in the results of those tests—an increase in PSA is discouraging and a decrease is encouraging. That makes sense except for the times it’s not logical. E.g. if a PSA score goes from 5.1 to 5.5 (not even statistically significant) it feels like bad news. If the PSA goes from 91 to 89 (again, not statistically significant) there is a feeling of new hope. So the numbers don’t seem to be as important as whether they trend ever so slightly up or down.

My PSA scores have had ups and downs like a mini roller coaster over the years. Except for a brief time after surgery and radiation (when it was nearly zero) it has fluctuated from two to four to three to five and back and forth depending on the current treatment and how long I’ve been on it. No treatment has helped for more than a year or two. Some new medications help immediately and some don’t help at all. There are many, many meds yet to try so this situation is likely to go on and on and on...

I don’t think about these things very often and most of the guys I know who are in my condition (just dropped in to see what condition my condition was in) say the same thing. 99% of the time I’m positive or oblivious, and then there’s that 1% of the time when I fall prey to mind tricks, emotional reactions, and the failing logic of ‘what if’. But this won’t be a problem for another three months, so let life go on.

axman

2012—Will THIS be the Year of the Prostate Cancer Cure?

Probably not, but...

For several years now, there has been progress in finding treatments that lengthen life and reduce side effects for guys with prostate cancer. Much of the research has focused on late-stage cancer. The improvements have been positive--but modest.

There will be an increased focus on a relatively new approach‑‑cancer vaccines‑‑in 2012. These are targeted injections that stimulate your own immune system to identify and kill specific cancer cells. The new vaccines will work much like the vaccines you have already had for smallpox, measles, and other common diseases. Some new vaccines in clinical trials have worked pretty well for some people with some cancers and a new vaccine, Provenge, has been approved to treat late-stage prostate cancer. There is a proven survival benefit—it’s not a cure.

Historically, some major treatments for prostate cancer have depressed (weakened) the immune system—radiation and chemotherapy are good examples. They are also known for their unpleasant side effects. A successful prostate cancer vaccine would do the opposite—strengthen your immune system and build antibodies that would be protective in the future. There would probably be few side effects. Sounds good, doesn’t it! Want to know more about cancer vaccines? Check out the National Cancer Institute.

But there’s a long way to go; even the successful vaccines don’t help everybody equally. I’m optimistic! Good luck to all us guys!

axman

How Much is a Long Time?

Time, it seems, is not equal for everybody

Another year is almost gone and I didn’t get it all done, again. My prostate cancer decided to ignore my hormone therapy and my new meds decided to give me more and different side effects. And I noticed somewhere along the way that I’m not 39 any more.

We start most years, the declining years that is, making at least an informal list of the things we want to do for the next 12 months. This always assumes that we’ll stay healthy, no project will take longer than planned, and nothing will cost more than budgeted. You’d think we’d learn, but we’re kind of stuck in that ‘old dog, new tricks’ thing. We’re not likely to change our plans and expectations willingly.

It’s been a great year, we’re mostly as healthy as we were at this time last year, and the projects we didn’t finish will wait a while longer—really.

But when it comes to visiting old friends there sometimes isn’t a next year. It has been the sad norm the past few years that we lose a few good friends each year. So in 2012 our number one priority is friends and everything else takes a back seat.

axman

Symptoms, Side Effects, and Winter

‘tis the season, fa la la la la, la la la la

It has now been six glorious months since I started my Lupron shots—and I’ve already complained a time or two about side effects—sorry.

So I contacted my friends John and Merle, fellow prostate cancer survivors, who have been enjoying Lupron for a year or more to check out their views. Our experiences and reactions have been as similar as if we were conjoined triplets (not a pretty fantasy).

Here are some of our rules and truisms of reality:

1.    When it’s winter you should always try to keep warm—extra layers of clothing, extra blankets, and a couple extra degrees on the thermostat, until...

2.    The hot flashes flash. Then, take off the extra layers, take off the extra blankets, and step out into the cold (if possible) and take a few deep cool breaths. It’ll help your body cool down. Once cooler, repeat steps one and two indefinitely.

3.    The trick is remembering when to do which and vice versa—really not so hard if you happen to be awake and alert (not always guaranteed). And finally...

4.    Repeat this short mantra to yourself; “The worse the side effect the more effective the medication must be.” Everybody nod in unison, close your eyes, click your heels together three times, and truly believe that this is true.

axman

The Value of a Support Network in Cancer Treatment - Basics

Guest Blog by David Haas

A cancer diagnosis can be a life changing event for many people, but having a caring and nurturing support network can make cancer treatment and recovery easier.

Cancer is usually caused by the uncontrolled replication of cells in a body, outside of normal regulatory mechanisms. While some forms of cancer can be asymptomatic, cancer treatments such as chemotherapy may cause a variety of symptoms in a patient. Chemotherapy works by preventing growth of rapidly reproducing cells. While this does prevent malignant cells from reproducing, chemotherapy can also impact other rapidly growing cells, leading to hair loss, libido changes, energy loss, depression, and systemic pain.

A support network can be a valuable tool in a cancer treatment program. While a doctor can be a valuable resource for medical information, it’s important to have a group of people one can relate to in a non-professional environment. Cancer support networks are available for a wide range of patients, ranging from rare cancers like mesothelioma to more common cancers like pancreatic cancer and breast cancer.

Many cancer patients can feel isolated, and may feel that no one understands what they are going through. While friends and family are an important part of a support network, a patient may feel that these people are unable to relate to what they are going through. By joining a support network, an individual undergoing chemotherapy can discuss symptoms, diet, exercise, and therapy with other people going through the same experience as him or her.

A cancer support network can also help prevent anxiety and depression, while offering social and recreational opportunities for a patient. If a patient is isolated during treatment, he or she may experience an existential crisis. Many cancer support networks offer a variety of recreational opportunities appropriate for patients, including vacations, simple sports activities, and shopping opportunities. Exercise is an important part of cancer therapy, and a support network offers the opportunity to interact and physically engage with individuals similar to one’s self.

Cancer support networks can also be valuable for patients concerned about their symptoms. While a doctor or therapist can provide textbook definitions of symptoms a patient may experience, it can be valuable to hear real life stories from other cancer survivors, and learn how they dealt with symptoms and emotional distress during recovery.

By: David Haas

davdhaas@gmail.com

The Geezer Time-Space-Speed Continuum

Didn’t things used to go slower in the good old days?

As some of you may have noticed (or not), as the decades go by your body starts to gradually decompose. You move slower, everything hurts, and the lightning fast reflexes you remember from your youth no longer exist. There’s a theory that your brain slows down, too, but I find that hard to believe (although my kids and grandkids often swear that it’s true).

Along with this long term slowing process the passage of time actually accelerates – like your life is in fast forward mode 24/7. And this speeding time gets faster and faster as you get slower and slower. Not fair, I say—but nobody asked me and I’m told that life is NOT actually fair.

My grandkids are eager to get older so they can drive, go to college, move out on their own, etc. For them, a great life requires that they achieve some magic age in life‑‑16 or 18 or 21.

At the same time, us old folks (me, at least) would like to slow or even reverse the passage of time—at least on occasion. In this strange world grandkids grow up too fast, vacations are over too soon, diseases progress much too rapidly, and even hard work is over too quickly (well, maybe not that one). The only slow things in my life are waiting in the doctor’s office, waiting for that social security check, and waiting for daylight so you can get up because you can’t sleep.

But modern science has given us a solution to this knotty and perplexing oddity of advancing age: and I quote from a leading Geriatric Medical Jouronal, “Suck it up and keep on keeping on”!

axman

To PSA or NOT to PSA--A Man's Dilemma

...another controversial medical recommendation

Recently, the USPSTF (U.S. Preventive Services Task Force) published a recommendation against routine PSA screening for men of all ages. They cited numerous clinical studies (some inconclusive or contradictory) showing no statistical survival benefit for men getting regular prostate cancer screening with a PSA compared to those men who did not have a PSA screening.

Further, the report pointed out the risk of men having unneeded and risky treatments that could result in impotence, incontinence, infections, heart attacks, and other unpleasant side effects.

There is no way to determine from a PSA test whether a tumor is aggressive (life threatening) or slow growing (not life threatening). A biopsy can help determine the growth rate of a tumor but there is some risk of infection (albeit small) from that invasive procedure.

So, they contend, no screening is better for the 5 out of 6 men who are likely to never get prostate cancer. And of the 1 in 6 who will get prostate cancer some will have a slow growing type and will not need immediate treatment.

But what about those poor guys (like me) who have or will have an aggressive (life threatening) tumor in their prostate? Although statistically not significant, determining risk and getting treatment early would be really helpful‑‑maybe even life saving.

Maybe the problem is not with the PSA test, which can detect cancer, but with the decision making by doctors and patients after the test. Could this, perhaps, be an area for further study?

I have had and will continue to have PSA tests on a regular basis. I know a number of men who are being treated for an aggressive form of prostate cancer. To a man they are happy to have been diagnosed and treated and still be alive. Me, too. We do not believe that our lives are not significant. The discussion is not over. There must be a better solution!

axman

The Therapeutic Benefits of Good Times and Good Friends

...this probably doesn’t show up much in the clinical trials and statistical research data

In my last blog entry‑‑September 26‑‑I mentioned the group of people we met in a clinical trial last year. Last week we hosted the group at our newly renovated farm house. It rained, of course, because this is Oregon.

The meeting was a little sad because we missed John (see last blog entry) but once the group assembled (out of the rain on our new covered patio) the mood was definitely upbeat. A little wine, some barbecued chicken and a lot of conversation. Some of it was small talk, more than a little was prostate cancer related (stages, meds, hot flashes, the latest PSA, etc.), some future plans, and lots and lots of heartfelt laughter. Imagine that; sick old people laughing and carrying on like a bunch of kids!

This group of 20—now 19—has a unique ability to lift my spirits. Whatever I might call it, the real purpose of the group is people support. And it works for me.

Our backgrounds are diverse and prostate cancer is the only obvious thing we have in common (except for old age). But we also share an irreverent sense of humor, an honest concern for each other, and a determination to continue fulfilling those entries on our bucket lists. So far‑‑so good.

I’m looking forward to our next get together in December and in March and in July and... I'm sure everybody else is, too.

axman

Still Another Friend Lost to Prostate Cancer

John Helmer was a quiet, caring, and friendly man. He was a well known businessman in the Portland, Oregon area for more than 60 years. I met him in a Prostate Cancer Clinical Trial program at Oregon Health and Science University in 2010. It was an exercise program for men with prostate cancer and their spouses - to help determine the effects of continued regular exercise on the health and longevity of prostate cancer patients.

It turned out that the men and women in the program enjoyed being together, formed a bond, and we have continued meeting every few months over the past year - long after the program had finished.

John was a world traveler, mountain climber, cyclist, and marathon runner. It turns out that we both ran the Boston Marathon the same year - almost 30 years before actually meeting. He was 88, but he seemed much younger. Carol and I will miss him as will his wife Beverly, his large extended family, and his very large circle of friends.

I raise a toast to John: a good man, a friend, and a terrific example for the rest of us.

axman

How Many Hot Flashes is Too Many?

...trick question^__ you can never have enough!

Since being promoted to Lupron a couple months ago my hot flashes have gradually increased in number and intensity—at least half a dozen private mini saunas every day.

They appear mostly at night. Strangely, I wake up about a minute before it happens, then beads of sweat pop out on my forehead and the warmth moves on down to the rest of my body and for a couple of minutes I’m toasty warm all over—sometimes too toasty. I usually get up and walk around and often step outside in an attempt to cool down faster and get back to sleep.

Then, an hour or two later, it starts all over again. My posse (half a dozen friends and acquaintances who are also doing the Lupron Chemo thing) assures me my experience is pretty standard. So why am I telling you all this? Well, if you have prostate cancer and it has recurred after initial treatment, you’re likely to experience something similar sooner or later.

Lucky you! Really! If you get to the hourly steam bath stage it means you’re still alive and you’re keeping the cancer under some level of control. And the sweat is just a part of the blood, sweat, toil, and tears of life (thank you Winston Churchill for those kind words).

axman