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

Nothing New Under the Sun

The key phrase here is 'under the sun.'

It's finally summer in the northwest (there is not always a summer here). Whatever else happens, I always feel better when the sun shines. It may be just in my head but that's OK with me. This helps explain our winters in Arizona and the trips to Hawaii whenever the budget allows. Warm, even too

warm, always trumps cold.

Everything has a downside and I have noticed three minor problems in the heat. Hot flashes are hotter, fatigue is more fatiguing, and for the life of me I can't remember the third one. A cold drink or two may tweak my memory.

I think most people have ideal conditions in which they feel better. I know others who follow the snow like I follow the sun. A day on the slopes does for them what a day on a tropical beach does for me. I'm pretty sure none of this has anything to do with my PSA or prostate cancer, but when I'm happy I think about my problems less. That has to be a good thing.

axman

Follow-up, Follow-up

The much awaited day (to me, anyway) has come...

In my last blog entry I lamented the cost of my new medication and the the uncertainty of results. Well, I had my blood draw and the results were more than encouraging. My PSA, which had leaped to 27 less than a month ago, has dropped to 16! That's in just three weeks on abiraterone. If that continues I may get back to an acceptable level in another month or two--hopefully. That is indeed good news. In the cancer world there is no guarantee good news will last forever, but it's a start!

The life of anyone with any type of incurable cancer goes by the numbers or x-rays, or some other marker. In the case of prostate cancer it is PSA--however accurate that may be. When my PSA is up I worry (but not too much). When my PSA goes down I celebrate (but not too much). When my PSA is going down the side effects (there are always side effects) don't seem so bad. Most of us, I suspect, get used to side effects over time and they just become a continuing minor annoyance.

Stay tuned.

axman

The New Gold $tandard

I finally made the big decision…

“Worth its weight in gold” takes on new meaning for me. I’ve written about the new super expensive cancer drugs several times. Now I've joined the club. The whole process has been very educational. My drug is abiraterone (Zytiga), but the numbers are similar for many other drugs for numerous cancers.

I discovered that drug companies, charitable organizations, and Medicare Extra Help offer financial assistance for those with no drug coverage insurance or the very high co-pays some drugs require. My oncology clinic helped me fill out forms and apply to the various possible organizations. The whole process was slow. My PSA had doubled, doubled again, and doubled yet again in the past year. So, I was slightly motivated to do something different and after six weeks of waiting I decided to go ahead and do it myself.

I am on a MedAdvantage plan that includes Medicare Part D. The exact co-pay will depend on which plan you have so rather than list specific dollar amounts that may not be the same for you, I’ll share my experience process. Part D has three levels, the first being your insurance company’s regular co-pay (29% of the total drug cost in my case). At a certain dollar level you enter the donut hole in which patients originally would pay 100%, but thanks to the Affordable Care Act, Medicare has a Coverage Gap Discount Program. If the drug company that makes your medication participates in the program (99% do) what you pay varies from 47.5% for brand name drugs to 79% for generics. Then there is the Catastrophic Coverage where patients have a small co-pay or coinsurance (I pay a 5% coinsurance) for the remainder of the calendar year.

My first prescription took me through all three levels, so my next refills will be in the 5% category. Then in January the party starts all over again. Thank you Part D.

Will an expensive drug work better than a much, much cheaper generic? Nobody knows for sure, and right now there no generics for most of these drugs. Watch this space every month for my latest PSA and blood panel information. If the drug lowers my PSA, helps me lose weight, and grows hair, the cost will seem worthwhile.

I can’t help thinking about those people who don’t have drug insurance coverage and have to come up with five figure co-pays every month. Most people can’t afford that. This can be the case with a lot of drugs for a lot of cancers. I consider myself fortunate, even though I groan and complain about the costs. It was good to find that there is help ‘out there.’ So do your homework, talk to doctors, nurses, your insurance company, the drug company that manufactures your meds, and your friends who have gone through the process. Don’t assume you can’t afford a drug until you check out all the possibilities. Like me, you might be surprised.

Medical costs are the leading cause of bankruptcy for Americans—especially the elderly. That is a frightening prospect. And being independent is pretty important to most of us. Without rich kids, an inheritance, lottery millions, or criminal gains I’ll have to plan a little more carefully—maybe even cut down on my extravagant lifestyle. But we’ll make do. Once I got all the information I was relieved to find that my costs would be in the thousands and not the tens of thousands—a lot, but not a life changing amount. My wife has decided to keep me. I’m sleeping better these days.

axman

Dear Big Pharma,

Are you sure you’re charging cancer patients enough for medications?

If you’re a cancer patient using one the new miracle drugs you already know about costs. Just for the record, I am very happy that big drug companies develop, test, and produce new cancer treatment drugs. It’s the price that raises questions.

Recently a group of more than 100 oncologists specializing in chronic myeloid leukemia (CML) co-authored an article in the American Society of Hematology Journal Blood http://www.hematology.org/News/2013/10454.aspx questioning the need for and ethics of drug companies charging patients $100,000 or more a year for medications. Drug companies need to cover their research costs—and make reasonable profits.

A major sponsor of the article was Dr. Brian Druker, Director of the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon. Dr. Druker was the main developer of one of the drugs in question, Gleevec. This drug has been very successful for patients with CML for more than 10 years. Although he gets nothing for developing the drug, the drug company that manufactures and sells the drug has systematically increased the cost of Gleevec from about $30,000 a year in 2001 to about $100,000 a year in 2013. The result is billions in profits. You’d think prices would go down after all the startup and research costs were covered. These oncologists hope to open a useful dialog with the drug companies. Curiously, these expensive drugs cost much less in most other countries.

The same cost concerns exist for all cancer drugs, including prostate cancer drugs. Several prostate cancer drugs have recently been approved, e.g. Provenge and Zytiga. Both cost patients about $100,000 a year. Some prostate cancer patients will not be able to afford the new medications. Patients with drug coverage are charged a co-pay which can be as much as $2000 or $3000 a month. Without drug coverage, patients are responsible for the entire amount. Some drug companies do provide free or reduced cost medications for a very few low income patients.

The FDA approved 12 cancer drugs in 2012. Eleven of them are priced above $100,000 a year. Some drugs are more successful than others but that doesn’t seem to impact the price very much.

Should drug costs to patients be capped? Should costs be related to patient income? Should drug companies charge as much as ‘traffic will bear’? Is there a fair price where drug companies make profits and patients have access to drugs they need to stay alive?

I have a very personal interest in this debate, or as my old neighbor would say, ‘I’ve got a dog in the hunt’—I just graduated to one of the super expensive drugs. I have learned a lot about drug co-pay assistance, Part D coverage from beginning to donut hole to catastrophic coverage (it’s more complicated than you’d think). It is estimated that about 10% of cancer patients do not take needed medications because of cost. Dr. Tomasz Beer, Deputy Director of the Knight Cancer Institute (and my oncologist) put it this way, “it kind of takes the wind out of your sails when you see your patients not being able to afford them (life saving drugs).”

It will be interesting to see what will happen with drug costs. I won’t hold my breath waiting for prices/co-pays to go down—but you never know. Maybe some pigs DO fly.

I did not mention the name of the pharmaceutical companies who manufacture the drugs mentioned in this article. If you’re interested, just Google the drug name.

axman

Boston Marathon Bombings--April 15, 2013

I have been a lifelong marathon runner, including the Boston Marathon in 1981. Boston is the Super Bowl of Marathons. Everyone wants to run there and be able to tell everyone they "Ran Boston."

A "Man Made" tragedy is the last thing you'd expect at a celebratory event like this. It is difficult to understand why somebody or some group would want to do something so horrific. Terrorism is common around the world and in the U.S. It has become a part of our life--mostly from afar, but sometimes, like this, up close.

We all want to protect our kids, grandkids, and extended family--but we can't--not totally. We have to live our lives in spite of all the dangers. Some things we can control a little--our health, our habits, where we live, etc. But we have to live our lives in spite of the risks and dangers. We can't control what goes on in the minds of some really sick and evil people.

I mourn for those who were killed, wish the wounded a quick recovery, and share my concern for all the families and friends affected by this horrible event.

axman

2013--So Far

Every year is a good year, but some years are a little better than others.

Writing a blog is not as easy as it looks (for me, at least). There is an assumption that I should have something to say that somebody else may actually want to read--not necessarily true. For several years now I have tried to post something every couple of weeks, usually with some connection to prostate cancer. With close attention to my procrastination skills, I have sometimes stretched the time between entries to three or four weeks. This doesn't have much affect on anybody else, of course, but in my own head I seem to be getting slower and slower...and slower. But I digress

2013 has been a pretty good year, so far. My PSA has leveled out so I don't have to switch to even more expensive meds--yet. We spent two weeks in Hawaii (with a three-year-old very precocious grandson) and a month in Arizona--we are drawn to sunshine. We normally live in the Northwest, which is not noted for lots of sunshine. You might wonder why. We wonder, too.

Even with my faltering memory, I can remember a lot of good years from the past; when we got married, when each of the kids (all five) was born, when we took a chance and moved to Canada, then Hawaii, and back to Oregon again (with a short stop in Texas). I remember the year I finished Grad School, ran my fastest Marathon, and of course when I retired (yay).

Then there were other years--when my wife was diagnosed with diabetes, when I was diagnosed and began treatment for prostate cancer, when my PSA jumped, etc. Those were more challenging years but we all survived. What does all this have to do with prostate cancer...or anything else? Not much, but I won't have to think about writing another blog entry for a couple of weeks. Move over Seinfeld!

axman

PSA Rising

…whatever that means…

Every man—with or without a prostate—would like a PSA of zero or close to zero. For many prostate cancer survivors (like me) there can be a gradual PSA increase over the years. I have had regular PSA testing for the past 10 years. For more than eight of those years my PSA has stayed about the same; somewhere around four. This was before, during, and after treatment (there were brief dips after surgery and radiation). Zero would have been better but I can live with four. I have lived with four.

Then, in a 12-month period, my PSA started to rise. I switched medications. It kept right on inching up. Five wasn't so bad but in a couple months it was eight. A few months later it was 12, then 13, and finally (I hope) 14. It seems to be stabilized for the moment. Why does this happen? How does this happen? What does it mean? Nobody seems to know. It just happens. What I do know is that the next generation of medications will be a lot more spendy (spendy is a well-known medical term) and with no guarantees.

There doesn't seem to be a consensus about when a PSA number is “high” or “of concern” or “critical.” PSA numbers can range from zero to 2,000 or more. Lower is better, of course, but how high is high? As long as I wake up every morning (not early), walk to the bathroom by myself, visit friends, walk to the mailbox (and back), and drink a glass or two of wine I’ll consider my numbers to be in the “normal range.”

axman

A Change of Scenery--A Different View

...as long as I can find my glasses to see it

Like many of my blogs, this one is only sort of related to prostate cancer. But I believe there are many things related to my health and the progression of any disease. Medical and scientific proof may be lacking, but how I feel is how I feel.

We just returned from two weeks in Hawaii--with our two-year-old grandson (and his parents). It was relaxing, fun, entertaining, and pushed our physical limits chasing a two-year-old up and down stairs, up and down the beach, and up and down volcanoes.

Taking time away from home always has positive effects on me (losing weight is not one of them). I think less about my aches and pains and diseases, and enjoy the adventure of whatever happens wherever I am. And I don't have to spend even a minute thinking about my to-do list at home. The glow will fade but there's always  the next time. I will repeat my motto: Do as much as I can as long as I can. But more and more slowly.

axman

Bigger is Better, by Gosh!

…but does it really matter?

In a study reported by the Dana-Farber Cancer Institute and Brigham and Women’s Center in Boston, a small percentage of men who had been treated for recurring prostate cancer reported (complained, actually) to their doctors that their penis seemed to be shorter than before treatment.

A report, published in the January 2013 issue of the journal Urology, concludes that perceived penis shortening in men with recurrent prostate cancer may affect their quality of life.

The survey included 948 men who had been treated for prostate cancer and the prostate cancer recurred. 3.7 percent of the men surveyed had undergone prostatectomy and 2.7 percent of men who had radiation plus hormone therapy reported penis shrinkage concerns. No men who received radiation without hormone therapy reported penis length concerns.

Although the study seems a bit unscientific (to me anyway), it points out it is very important that all men facing treatment need to know what side effects they may face from each of the several possible treatments. The conclusions make good common sense but, in fact, no penises were actually measured before, during, or after the survey. No questions about penis length were included in the survey. All concerns about penis shrinkage were offered spontaneously by men being interviewed.

My unscientific take on this…

A large percentage of men who undergo any kind of prostate cancer treatment will eventually have an increased risk of incontinence and impotence—regardless of penis length. This certainly trumps penis size in my world. In the past ten years I have had a radical prostatectomy, gone through radiation therapy, and taken hormones more than five years. I have concerns about my health, side effects, and survival potential. I keep track of PSA increases, hot flashes, possible metastasis, nausea, fatigue, and weakness. I believe most men with prostate cancer adapt pretty well to whatever happens; the nastiest of side effects and the inevitable progress of incurable cancer.

For me it’s a matter of priorities. I gotta admit that penis length is way, way, way down on my list of what’s important in the treatment of my prostate cancer. But that's just me. What do you think?

axman