I am Past My “Use By…” Date and then Some!

Surprise, surprise, I’m headed for another year.

Maybe I will accomplish something great this year…write the great American novel, make congress productive, or find a cure for procrastination. More likely, however, I will continue to have fun and enjoy every day.

Over the ten years I have lived with cancer I have tried, and mostly succeeded, to be active, positive, and moderately productive. I have written or co-written three cancer related books. The research and writing was actually a lot of fun and also challenging. My quite modest expectations of fame and fortune proved not to be nearly modest enough. I have no regrets. I’d probably do it again. And I just might.

Now for a moment of unabashed self-promotion. Two of the books are in print and available, really (the third is not yet published). Real Men Get Prostate Cancer Too and Cancer Clinical Trials can be found at Amazon and other fine book sellers. My next book will have a much catchier and more profitable title—something like, 50 Shades of Old and Grey, or Get Rich with Clinical Trials, or A Cure for Cancer—Guaranteed! Sound OK to you?

I sometimes wonder why I seem to be surviving quite well while others with the same diagnosis and prognosis I have, aren't. I’m not complaining about surviving, but there is that nagging question of “why me?” I know life is unpredictable and that’s probably for the best.

In 2014 I hope to do better at finding my glasses, phone, keys, and that half-full coffee cup. So it’s on, on‑‑to new adventures in traveling, spending quality time with family and friends, wandering aimlessly around the Arizona desert, gardening (mini adventure), and taking a nap whenever I want to.

The very best of everything in 2014 and may the cures be with you!

axman

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

How to be a Cancer Survivor

(Hint: don’t die)

Maybe the most common term in the world of cancer (after, “You have cancer”) is Cancer Survivor. There are about 12 million survivors in the U.S. and millions more around the world. The term can have vastly different meanings for different people. In a nutshell, if you have (or had) cancer and are still alive, you are a Cancer Survivor. If you had cancer and are no longer alive, you are NOT a Cancer Survivor. Amen.

To some, the term is insulting or at best irrelevant. To others it is a badge of honor for fighting long and hard to survive. There are, of course, numerous types of cancer, many and varied treatments, and several levels of severity. And all the people in all these situations fall into the general category of Cancer Survivor. Surviving is good (at least that’s the way I look at it). But the term Cancer Survivor doesn’t differentiate between a cure and Stage 4 or a few skin cancer cells and an incurable melanoma. I am a Cancer Survivor who is a lot healthier than many other Cancer Survivors but not as healthy as some other Cancer Survivors.

When someone asks you if you are a Cancer Survivor, what do you say? Should you tell them more? How much more? Or just nod and say, “Yes”? Does it matter whether you are a breast cancer survivor, prostate cancer survivor, lung cancer survivor, or a survivor of a hundred other cancers? I think most people without cancer use the term as a sign of support and caring and probably don’t want or need a lot of information. What do you think?

axman

My Significant Other

The REAL Good Wife

I have rattled on about testing, treatments, doctors, nurses, costs, side effects, support groups, and more.

But, far and away the most important part of my life and survival is my wife, Carol. You have probably seen the research showing that men who have prostate cancer live significantly longer if they are married. This is true. I can think of a thousand reasons why it is true (but I promise not to list them all here).

• Carol regularly reminds me to take my meds—almost every day and with only a slight inflection of frustration and rolling of the eyes.
• The same goes for doctor appointments, car repairs, mowing the lawn, putting my dirty dishes in the sink, etc.
• A smile, a hand on my shoulder, or a hug always makes me feel better—even when I’m having a bad day. This gentle contact may work better than prescription meds.
• Having something to live for does improve my quality of life. Wife, kids, grandkids, friends, relatives, tasks to get done, and even occasionally checking something off my Bucket List.
• Knowing that I am important to somebody is a pretty good feeling. She could be faking it, but…naaaa.
• Carol and I spend most of our time together and, after 53 years, still enjoy it.
• Getting older, with a little luck, is inevitable, getting sick is all too common, but finding a way to enjoy life is priceless.

Grandma (one of her politically correct nicknames) and I will continue to do as much as we can for as long as we can. A week, a month, or 20 years—nobody knows for sure. I’d prefer the 20 year option, however.

axman

A Compendium of My Very Favorite Prostate Cancer Drug Side Effects

…in pursuit of life, liberty, and interesting times

In the past ten years I have undergone primary treatments, clinical trials, and a variety of hormone therapy treatments. My main interest was cure (early on) and now management (for more than eight years). But there have always been those nagging little concerns—side effects. All men experience side effects and there are oh so many to choose from.

In the beginning I opted for first line treatments‑‑surgery and radiation. Along with these treatments come often nasty, unwanted, but permanent side effects including impotence and incontinence (the big two). Both of these can kind of creep up on you (and me) over the years. Reluctantly, I adjust and say to myself, “Damn, but I’m still alive.”

There are many, many possible side effects. I’m going to share my list and comment on a few. This is in no way a complete list. There is no complete list. There are certainly more side effects than there are treatments. Maybe researchers should try to find side effects and let the treatment benefits be secondary. This will be longer than the average blog entry.

•            Hot Flashes are nasty and serve no useful purpose. They disrupt sleep and cause me to change shirts a lot (I have a lot of shirts). Women are not usually sympathetic to us guys who are having hot flashes. On the upside, I am seldom cold.

·        Weight Gain is almost never a good thing. Many drugs make weight gain likely. Most of us do not need to gain weight. I have spent a couple years fighting weight gain.

·        Weight Loss occurs less often, but is a possibility. If you just gained weight (see previous item) a little weight loss might not be so bad. I’m actually making weight loss progress—slowly.

·        Hair Loss is common in ageing males. I sadly accept the demise of the hair on top of my head. But some of my meds have caused all the hair on the rest of my body to disappear. No need for waxing. So far it’s not coming back.

·        Hair Growth can happen with some meds. At least one major med was originally designed to grow hair on balding men. I've grown and lost the hair on my head several times. The anticipation adds excitement to my life.

·        Cramps in muscles or stomach or intestines can be unpleasant. In my experience the stomach cramps were most common when I had to take meds on an empty stomach. Finding a time when my stomach was empty was the challenge.

·        Joint Pain can be caused by arthritis and a long list of other conditions. Maybe my meds aren’t to blame after all. Maybe I’m just terminally old.

·        Fatigue can also be age related, but my fatigue level seems to rise and fall depending on the current medications I’m taking—and what chores my wife has lined up for me.

·        Shortness of Breath is a bitch. There have been times when just going up or down a flight of stairs required sitting down for a couple of minutes of recovery. This also gets me out of my chores from time to time.

·        Dizziness can come and go. It seems to be related to fatigue and shortness of breath. These three constitute the evil axis of side effects.

·        Diarrhea needs no explanation. Some meds are more likely than others to trigger unexpected runs (no pun intended) to the bathroom. Ok, the pun was intended.

·        Insomnia can certainly exacerbate fatigue. In my case if I don’t sleep at night I can sleep all day. Ain’t retirement great?

There are many, many more side effects I haven’t had the honor to experience—yet.

Don’t get me wrong; if the side effects are the price I pay for effective treatment it’s a trade-off I can live with. Sometimes, however, it seems the side effects do more harm than the medication does good. Maybe that’s the time to look for another treatment.

Here’s my old geezer wish list:

1    A cancer cure would be nice; it couldn’t hurt‑‑even if it meant taking a maintenance drug forever. That’s not likely in the near future.

2   I’d like fewer and less intense side effects in current and future prostate cancer drugs. That’s not very likely either.

3  I want drugs that don’t cost an arm and a leg (a few fingers and toes would be acceptable, however). You decide how likely this is… 

4 I wish drugs managed PSA levels longer. I have changed drugs numerous times over the years when they suddenly became ineffective and my PSA jumped quickly.

Send me a list and descriptions of your particular favorite side effects.

axman 

It's Prostate Cancer Awareness Month--again

This is the 14th annual (I think) Prostate Cancer Awareness Month. 

I try to make a note of it each year just so none of us forget. There's not much new to say this year, but maybe just repeating the ever-improving statistics can give you an idea of the size of the problem.

1. More than two and a half million American men are living with prostate cancer or have been diagnosed and treated for prostate cancer.
2. 238,000 American men will be diagnosed this year.
3. Nearly 30,000 men in the U.S. will die from prostate cancer in 2013.
   

There is a trend for more men to be diagnosed with prostate cancer each year and fewer to die from it. That's good. Most men with prostate cancer will die from some other cause. Heart disease is the most common cause of death for men with prostate cancer. That makes sense--the median age of diagnosis is 66 so many men already have other health concerns.

My ten-year survival is not uncommon. Good doctors and new treatments have made a difference. Funding by the National Cancer Institute and donations to the American Cancer Society and other non-profit organizations have helped make research possible. Cancer research is very expensive and 'awareness' months have helped bring in money for research and improvements in treatment for other cancers as well. For example, I am taking a medication that was not available to me a couple years ago. I am able to live a more-or-less normal life largely because of medical research and clinical trials. Woo Hoo.

I'm still awaiting that magical time when the word CURE is at least as common as TREATMENT or MANAGEMENT.

axman

The Good Years

OK, OK, all years are good years (if you really want them to be). 

Just about everybody has plans for retirement and the golden years. But by the time retirement comes around nobody knows for sure what mental and physical condition they'll be in. Some people golf, play tennis, and compete in Iron-man competitions year after year (show-offs). Some have physical problems and may need a walker, cane, or even a wheel chair. Strokes and other conditions can affect speech and memory. Others have diseases like

Parkinson's, diabetes, MS, or cancer. You can't know for sure how these diseases will progress--and reality can change rapidly. None of these conditions will necessarily determine whether or not you're positive and happy.

When my wife and I retired she already had type II diabetes and I, of course, had prostate cancer. We had very little idea of what might actually happen in the future. Both of us have benefited from advances in medical science but not so much from the advances in medical costs. So far we have been able to do everything we hoped to do in retirement (as long as we work around the doctor appointments). We're told that our increasing aches and pains, slower movements, and memory lapses are normal for our age. Who defines 'normal?'

I am reluctant to share this, but it seems the busier we are the better we feel. So much for laying around and being lazy (all the time). It appears all this activity really is good for me--or so says my wife (who is the world champion maker of to-do lists). I encourage you to be as active and busy as you can. These really are the good years--I think.

axman

Birthday Blog--2013

Every year I write a Birthday Blog to celebrate still being around. This is a Blog and it is my Birthday, so...

This year is the tenth anniversary, to the week, of my prostate cancer diagnosis. My ten year report includes:

1. Being alive--with medical data to prove it
2. Staying active, more or less, as long as I get my daily nap
3. Financially supporting both the medical and drug industries
4. Still writing blogs and the occasional book--which works best when I can remember the words and how to spell them
5. having less hair, more aches and pains, and a foggier memory

The good news is there is an ever increasing number of new prostate cancer treatments and medications. One by one they have helped me keep going. Most of them worked for a while--until they didn't.

The less good news, of course, is that none of the new meds or treatments will cure me or anybody else.

The end (of the Blog, not me)--for now.

Addendum: It amazes me how fast ten years has passed. The next ten years will likely pass even faster. So I'm going to start my Birthday Blog 2023 tomorrow.

axman

A REALLY Good Month

It's time to celebrate when a new treatment actually seems to work!

Over the past several months I have rambled on about high drug costs, the high profit margins of big pharma, and shared my skepticism about all the miracle drugs. None of my opinions has changed much--but--

I am pleased to announce that my PSA, which had peaked at 27 in May, has dropped to 1.3 (note placement of decimal in that number) in only two months! I would never have believed that it could or would happen (to me, anyway). Since I started taking abiraterone (Zytiga) at the end of May I have had very, very good results. Two months is not very long and there is always the possibility that the good effects won't last, side effects will become intolerable, or I will be hit by a bus. But for now I will enjoy the good news. This is my lowest PSA number in almost nine years. Woo Hoo. I'll drink to that! In all honesty, if it was my highest PSA number I'd also drink to that.

For the past eight years I have continuously been on one or more forms of hormone therapy. None of the previous pills or injections reversed, stopped, or even slowed the rise of my dreaded PSA for more than a year. Abiraterone is the first treatment that actually significantly lowered my PSA. I certainly hope this is more than a passing fancy.

Time will provide the answers--it always does. I know there are no absolutes in cancer treatment--no two people respond in exactly the same way to any treatment. But, so far, I'm getting my money's worth.

axman

Holy Mackerel, Batman!

The media is telling us guys with prostate cancer that fish oil could make our condition worse!

A 2011 study has been replicated in 2013 and shows a correlation between high levels of fish oil consumption and increased risk of aggressive prostate cancer. High level is defined as one fish oil capsule a day and/or eating fatty fish, such as salmon, twice a week. Note that it says correlation and not cause.

Researchers at the Fred Hutchinson Cancer Research Center, in Seattle, released a study showing that high intake of omega-3 fatty acids is correlated with a 71 percent increased risk of high grade prostate cancer and a 44 per cent increase in the risk of low grade prostate cancer. They analyzed data from an earlier study of the effects of selenium and vitamin E in preventing prostate cancer (neither did). The analysis included 834 men who had already been diagnosed with prostate cancer and a comparison group of 1,393 men who were cancer free. The results have been published in the online edition of theJournal of the National Cancer Institute.

What does that mean for all of us who have been taking fish oil capsules and eating fish as often as possible for years and years and years? As far as I can tell, nobody knows for sure (yet). Should we stop taking fish oil capsules and eating fish? Some researchers say yes, stop now. A few say we should carry on as usual, and a very few suggest that this whole thing is a socialist plot to destroy big pharma (and maybe save fatty fish). It would probably be a good idea to talk to your oncologist before you make any changes in your normal routine.

For many years I took a whole handful of supplements every day. Slowly, researchers suggested that I would likely not benefit from selenium, vitamin E, large doses of vitamin C, and even multiple vitamins. Is my D3 and low-dose aspirin still safe? Some researchers suggest that most people don’t need any supplements whatsoever.

If we wait a few more months or years the rules will change again—and again. What’s a guy to do?

axman