Some Progress is Better than No Progress

Having incurable cancer has led me to regularly adjust my definition of "quality of life."

Three chemo treatments down, seven to go. In the past month my PSA has gone from a high of 54 (way too high) to 22 this week--still high but much improved. My goal is zero or thereabouts.

I still have some hair but it is thinning fast. And I am eating better, walking better, and being more alert more often (don't hold me to that one). I gained three pounds in a month. First time I've actually gained weight in six months. I lost about 50 pounds in those six months--none of it on purpose. I bottomed out at about 132--my 12-year-old weight. Gives new meaning to second childhood.

I keep hearing about all the nasty side effects I can expect from the chemo infusions, but my side effects have been minor, so far. But then there are seven sessions to go. I'm optimistic but not fanatically so. Stuff (this is PG rated) happens.

Just so you don't think I'm living in la la land, I know I still have stage four prostate cancer that has metastasized to all sorts of places in my body, including my lungs, bones, and bladder. I can't run marathons any more, my wife won't let me climb on the roof to clean gutters (hmmmm, maybe not so bad), I need a nap or two every day, I can't stay awake through a movie, and just about no body part works as well as it used to.

I can't see or feel those internal problem areas so when my other outer symptoms/conditions are addressed I feel pretty good. "Good" as in my new definition of Quality of Life. Nothing hurts much, I get around (rather) slowly, I can still write blogs and draw cartoons, and I can spend time with family and friends. In summary, I have a pretty Good Quality of Life!

axman

There is NO free lunch—and NO miracle drugs

Cancer treatments can have unintended side effects‑‑forever

 

Many of us have had treatments and taken multiple medications for all sorts of cancer related conditions. Many of these common and widely used treatments and meds have significant side effects—as you surely know by now, but were not necessarily aware of at the beginning of treatment. 

Revisiting this has been triggered by my recent bladder procedure (cystoscopy) to remove cancer cells and cauterize ‘bleeders’ from my bladder cystitis. The cancer is a continuation of my prostate cancer and the cystitis was likely caused by radiation therapy I had ten years ago, for prostate cancer diagnosed twelve years ago. I was unaware all these years that radiation could cause such a ‘side effect.’ 

On the medication side, one purpose of clinical trials is to determine if the side effects of the experimental medication is within tolerable limits. No one expects new drugs to be free of side effects but, in fact, different people have different levels of unintended results. If the side effect is worse than the disease the FDA won’t approve it (probably). I have had many medication side effects. My list of med side effects has included loss of body hair, growth of hair on my head, significant breast growth, joint pains, hot flashes, upset stomach, fatigue, etc. My wife says ‘crankiness’ is another side effect. 

Treatments such as Chemo and Radiation kill all the bad cells and all the good cells they come in contact with. The ‘bad’ (cancer) cells are supposed to stay dead and the ‘good’ cells are supposed to grow back, mostly. That works often enough for these treatments to be used regularly. These treatments may help, or not. But there will likely be side effects. In my case the radiation did not work and the long-term side effects have been significant. I probably should have done my ‘homework’ a little better and a little sooner.

Pills and injections are less traumatic treatments but if you read the fine print that comes with your prescription, you are at risk some for every disease and condition known to medical science. I take pills to counteract the side effect of other pills. You may be doing the same thing. Why do we do it over and over? It all has to do with our quest to stay alive a little longer.

Of course I will continue to undergo treatments, take pills, and have injections in the hope that I will stay alive and be able to manage the side effects…just a little longer. I also pledge to do more and better homework so I know what to expect.

axman

74 and Counting—Slowly

Another pretty good Year!

In my world, counting, walking, eating, and everything else is done slowly these days. Eleven years ago this month I was diagnosed with prostate cancer. It was just a few days after my 63^rd birthday. That was not my favorite birthday.

I’ve always tried to be an active and upbeat kind of guy (mostly) and had figured I’d probably live forever. But when I got my PC diagnosis my first thought was, “Gotta be a mistake,” and then, “I’m gonna die!” It wasn’t a mistake and I didn’t die. I have since adopted a more moderate approach to life. 

Of the many, many people living with incurable cancer of any kind, I am definitely in the luckiest group. The reality is that year by year my cancer has continued to grow gradually. The treatments and many different meds have significantly slowed the process but not without a smorgasbord of not-so-great side effects. But slow is good and I may still live forever.

I’ve lived longer and better than I thought I might. So instead of worrying about the few things that aren’t perfect, I’ll keep on as usual. My body and, more or less, my mind work well enough for me to travel, visit friends and family, work on the farm, read books, and write stuff like this. No complaints, no regrets (well, maybe a few), and I’m still waiting, along with many of you, for that elusive breakthrough cancer cure. Happy Birthday to Me.

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 

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

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

Confusion Reigns

…so everything is just about normal.

If you have had prostate cancer for a while you may have noticed that there has been a lot of published research in the past several years designed to clarify the diagnosis and treatment process of the disease. Had you been paying attention you would have learned (from respected researchers) that:

•      Guys who are healthy and have never had a PSA test should generally not be tested. There is no survival advantage and there is the possibility of over treatment.
•      Some guys should be tested with the PSA if they and their doctor think it’s a good idea (for example if it runs in the family). And similar research in Europe has shown there does seem to be about a 20% survival advantage to having regular PSA tests.
•          Younger men, newly diagnosed with slow growing prostate cancer, show no survival benefit from surgery. What about those with faster growing tumors or a high PSA?
•      Older men, newly diagnosed, show no survival benefit from surgery. Too bad.
•      Treatment of any kind may not show a significant survival benefit.
•      Treatment saves lives or extends lives for some (different researchers).

So, armed with this definitive scientific information, you and your medical team can confidently plan a treatment (or non-treatment) regimen to keep you as healthy as possible for as long as possible (don’t you feel more positive already?). I would certainly like to show a survival benefit. So far I’m surviving and that is definitely a survival benefit to me.

Every man’s experience with prostate cancer is different, every man’s choices are a little different, every man’s attitude is a little different, every man’s response to treatment is a little different, every man’s tolerance of medical side effects is different, but we all hope it works for us.

Nobody really knows what will work for any individual at any time. This is a good reason to be seriously involved in your own treatment. You know how you feel, what you want, what your side effects are, and what you are willing or not willing to do or tolerate.

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

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 Long Hot (Flash) Summer

Not much sun, but the heat comes in the middle of the night

Three weeks after my Lupron shot I don’t feel much different than I did before. There is one notable exception – the dreaded hot flash.

During the day I keep pretty busy writing, building, pouring concrete, cutting weeds, and other manly activities with nary a flash of hot. That’s good. But once I go to sleep I can count on at least one and usually two bouts with heat and sweat during the night. Worse yet, it wakes me up-so I get up, change my jammies, go to the bathroom, turn my pillow over to the dry side, and try to get back to sleep. I usually succeed.

None of these bouts lasts more than a few minutes and they’re certainly not unbearable. My wife just smiles and says, “See, I told you what they were like”. Mostly it’s an annoyance and results in a lot of extra laundry the next day.

I’m sure many of you have more and worse side effects so this will be my last time complaining about this particular one. Probably. But if I should ever have a new one...

axman

The Next Step – Lupron

With a shot in my backside I was launched into a new phase of prostate cancer treatment...

I knew this day would come sooner or later (I’d prefer later‑‑given a choice). My substitute oncologist (Dr. G) recommended a change in medication because my PSA has gone up significantly every three months for almost a year on the old hormone meds. Lupron was her drug of choice. It’s stronger than the hormones I’ve been taking and is supposed to lower my PSA in a short time (stay tuned for my October PSA test). I know many thousands are already using Lupron, so let me know what your experiences have been.

The shot is good for three months so I don’t have to take so many pills—that’s a plus. But the side effects may be a little stronger and stranger. I can expect hot flashes, some bone pain, headaches, depression, and maybe weight gain (I can probably fight those last two). On the inside my bones will likely lose mass. So I’ll take more calcium, more D3, spend time in the sun, and get lots of exercise. Fatigue in another side effect but I’m already tired so may not even notice.

I intend to let the summer unfold, bask in the sun, keep busy building more rooms onto the house, and continue doing all the things on my Bucket List.

axman

More Side Effects of Aging

It’s not fair and it never ends, but I haven’t found a reasonable alternative...yet

I’m only half joking when I tell friends and family that life has several clearly identifiable stages.

          Stage one – You live and slow down gracefully from birth to age 60.

          Stage two – You age as much between 60 and 70 as you did from zero to 60.

          Stage three – The jury is still out.

It’s the truth. At a youthful 60 I could still run ultra marathons, work 16 hour days, and keep up with the grandkids. Not so at an ancient 70. Between the medical side effects from my prostate cancer meds and the inevitable side effects of physical aging the changes are clearly evident to me (and probably everybody else, too).

Slowing down, taking it easy, and enjoying life really sounds good—actually doing it has been a lot more difficult that it sounds. I’m working on it. But there are so many things needing to be done and watching somebody else doing them (instead of me) just doesn’t feel right. Being a useless old man is not something on my Bucket List. My wife nods and smiles whenever I say it, however.

Stay tuned—I’ll chart my progress, or lack thereof, toward the good if not the useful life. But now it’s time to take my pills and then my nap.

axman

OMG—something to make Me Feel even Older

And I’ve even got old kids to prove it

My oldest son turns 48 this week. That’s good. He’s healthy, successful, and still keeps in touch with his elderly parents. All five kids are over 40 and then there are five teen-aged grandkids (and one mere babe). All this is good.

When I turned 70 I did a quick inventory of my aches and pains (there were more than a few) and determined that, in fact, I was getting older and more decrepit. But in my mind I was still 30. As the kids get older and older it’s hard to claim 30 or 40 or 50 or even 60.

I feel my true age more days in a week or a month than I used to. I have more side effects from those ever-increasing prescription strengths. I’m still alive, so all this is good, too.

Bottom line‑‑I guess I’ll have to come to terms with being young at heart, ancient of body, and the elder in my family (not as prestigious as in past generations). And I’m getting used to all those gray-haired kids of mine (at least in those who have hair).

axman

The PSA Test – to be or not to be

What’s a guy to do?

In recent weeks and months there has been a lot written and said about the PSA (prostate specific antigen) test that men have been getting for several decades to help detect prostate cancer.

Some doctors and researchers are condemning the test as useless or even harmful and others defend it. What should us poor guys (who need the information) do? I’m way past the diagnosis part but I get PSA tests every three months to help determine the amount of hormone therapy I get. That seems to work for me.

Opponents say that PSA tests result in a lot of unnecessary treatments – surgery, radiation, freezing, and other options. And those treatments can lead to impotence and incontinence. That’s true - those side effects do happen. Common sense and patience might help. The PSA test is less than perfect but what is plan B? Nobody seems to know.

Increased PSA doesn’t necessarily mean you have prostate cancer. But results can provide information you need to weigh future decisions about your condition.

If you have never had a PSA test, check out organizations that you trust for more information and certainly talk to your doctor. What do the experts say? Check out the Mayo Clinic and American Cancer Society guidelines. They’ve changed over the years. Whatever their recommendations are you and your doctor will still need to talk and decide.

Mayo Clinic – PSA Guidelines http://www.mayoclinic.com/health/prostate-cancer/HQ01273.

American Cancer Society – New PSA Guidelines http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Revised_Prostate_Cancer_Screening_Guidelines_What_Has--and_Hasnt--Changed.asp.

I’ve had many PSA tests and will probably have many more. Every man has to look at all the options and decide for himself. What do YOU think?

axman

It’s Pills, Pills, Pills…

That’ll Cure Our Ills

I don’t see myself as a pill popper, but when I count up all the pills I take each day it appears that I am. I’m not alone! Pills are supposed to keep us healthy, prevent disease, and keep us alive when all else fails. So why do YOU take pills?

To numb our pains we all take pills.

For the upset from pain pills – more pills.

To manage cancer we take bunches of pills.

To manage the cancer pills we still take pills.

Of course if you can’t sleep – it’s pills.

Then to wake up and be alert we need pills.

If we’re lucky we get generic pills.

If not we swallow Name Brand pills.

Sometimes there’s a chance to get experimental pills.

Then there are ‘make water’ pills.

And ‘stop making water’ pills.

To start your heart you may need pills.

And to slow it down, take different pills.

After eating we take ‘full stomach’ pills.

Before eating it’s the ‘empty stomach’ pills.

So all our ills are treated with pills.

Or maybe those ills are caused by pills.

I’d write more but it’s time to take my pills.

axman

The Most Unpleasant Side Effects

…Still Slightly Better Than Being Dead

I routinely complain about the side effects from my surgery, radiation, and medications. But the fact is I am more than willing to endure the fatigue, weight gain, strange growths, hot flashes, and pain – as long as I can stay vertical or at least above ground. Surviving trumps lots of other stuff; no matter what others may tell you.

Time, research, and improved medications are resulting in fewer side effects – or so I’m told by highly educated medical practitioners. At the present time I’m still alive and more or less able to lead a normal life. Normal for an old duffer anyway... And I can use my current side effects as an excuse to avoid working in the garden and cleaning out the gutters (please don’t tell my wife).

I’m betting that all my elderly friends who bemoan the strange side effects they’re coping with wouldn’t trade those side effects for a pine box – just yet. Senior life, living with incurable diseases, and normal wear and tear requires choices and compromises – and a little hell-raising if you’re lucky. I am.

axman

Don't Read the Fine Print!!

Like many of you, I've been taking several medications to "manage" my prostate cancer for a while now. There are dozens of drugs in several categories that are supposed to slow prostate cancer growth in strange and unique ways. That's old news.

If you have a slightly perverse mind - like me - spend an entertaining half hour googling your meds and checking out the Side Effects section (sometimes called contraindications). No matter what the drug, there will be a list of possible side effects as long as your arm - it's required by law.

After reading about the possibility of hot flashes, constipation, incontinence, diarrhea, cramps, swelling, headaches, weight gain, memory loss, and impaired vision it seems I might be better off with the cancer than the side effects! My oncologist says different but HE isn't taking my pills. But to tell it like it is, I haven't actually experienced MOST of the possible side effects.

So, I have decided (for now) to ignore those lists until I actually experience a contraindication or two.
axman