Goodbye

We are Larry Axmaker's family: wife, kids, and grandkids.

As many of you know, Larry has been battling prostate cancer for many years. In the company of his family, on Monday, February 13, 2017, he crossed the finish line of this longest of races.

Had Larry been able to write his own memorial post, it surely would have been witty and educational and punctuated with a cartoon. Please allow your imagination to fill in.

We can share with you, his readers, how much enjoyment and satisfaction writing this blog has given him, and how much he appreciated communicating with all of you.

Please feel free to share your thoughts and final messages in the comments below.

October 2016 Update--After the Marathon

The trip west was well worth it!

It all went well, of course. Shelley (from Connecticut) and Jeff (from Colorado) exceeded their Portland Marathon goals. Jeff met the qualifying time for the next Boston Marathon. Their Funding Goal was also exceeded, by more than half. The Knight Cancer Institute at OHSU now has new research money (a few hundred dollars to add to the zillions already there). And we had a great visit!

Shelley (4:44), Grandpa with his 2003 shirt, and Jeff (3:03)

For more background details see the last BLOG, dated September 24.

No Good Deed...

We left home at 5:00 a.m. to drop off the runners (Shelley and Jeff) and support crew (Dan and Julie) and then look for a place to park.All of us spent six or seven hours in the rain trying to catch a glimpse of our runners. And I happened to be the one to catch a cold while cheering on the kids.

I ended up with a fever, a stay in the hospital, and now a urinary tract infection complete with antibiotics. My latest chemotherapy treatment has been postponed for a few weeks. I sleep a lot.

Now we have to arrange treatment, still get in our 10-day trip to Hawaii (not negotiable), and make sure all the medical stuff works out.

Cancer still SUCKS and my next Blog will attempt to get back to prostate cancer and other normal stuff.

axman

Fall Updates

A Very Brief Status Update--and More

Life goes on and on and not much seems to be changing--which in my case is a good thing. Seven of ten chemo treatments are completed, my fatigue doesn't go away but is manageable, and there has been a slight rise in my PSA that will lead to an increase in chemo potency. That's about it.

On a much more pleasant note, my daughter Shelley and grandson Jeff are flying in from Connecticut and Colorado to run the Portland Marathon. I ran it five or six times but my marathon days are long over, unfortunately (but I can still dream). Shelley ran her last marathon, with me on Maui, when she was 14. She figures she's recovered enough to try another one nearly 40 years later. Jeff has run several recent marathons and hopes to qualify for Boston. A chip off the old block.

To add to the excitement, Shelley and Jeff set up a fund raising site to benefit the Oregon Health and Science University Knight Cancer Institute. Portland Marathon: Team Shelley and Jeff! Their website says: Shelley and Jeff are running the Portland Marathon on October 9, 2016 and, through that event, raising funds for Prostate Cancer Research in honor of Larry Axmaker, who has run the Portland Marathon many times in his running career. Shelley's Dad and Jeff's Grandpa, Larry Axmaker was diagnosed with Prostate Cancer in 2003.    I am honored.

If you've got a few minutes, check out their web page. Here is a link to the Team Shelley and Jeff Prostate Cancer Research site.

Go Shelley! Go Jeff! Wish I was running with you!

axman

What’s New is the World of (Legal) Drugs?

The Big Pharma Shuffle—Yet Again

Over the years, large pharmaceutical companies (Big Pharma) have purchased (in friendly or unfriendly takeovers) smaller pharmaceutical companies (Less Big Pharma) that had popular and profitable drugs on the market. Pfizer (Big, Big Pharma) has been very good at this. Since Pfizer’s Viagra will no longer be patent protected after 2020, Big Pfizer needed a new superstar drug. Viagra has been one of the most profitable drugs ever. Teva Pharmaceuticals will produce a generic version of Viagra starting in 2017 (just thought you’d want to know that).

Enter Xtandi (enzalutamide), Medivation’s successful and very expensive late stage prostate cancer hormone treatment. Pfizer was willing to pay $14 Billion for the company and Medivation was willing to take it. The transaction is in process. When approved, Pfizer will simply write a check with a lot of zeros on it. Earlier this year Pfizer received FDA approval for an advanced breast cancer drug called Ibrance. With the merger Pfizer will immediately become a major player in oncology. Pfizer explains it all in a very comprehensive Press Release.

In the Big Pharma world, big companies get bigger and smaller companies disappear. Fewer companies own more drugs and have more control over drug costs. This is good for corporate profits but might not be so good for us consumers in the long run. Just sayin.’

Drug Price Increases

Massive drug price increases have been in the news recently—Epi-Pen and Albuterol and Embrel and Humira are well-known brands that come to mind. Many other drug prices have risen steadily but often by smaller percentages several times a year and they don’t attract as much attention.

Generic drug makers are just as likely to hike prices as the brand names. It’s just that the generic drugs often start out at much lower prices and the increases are not always as obvious. People complain, they contact Congress, they flood social media, threaten to boycott the drug (which hurts the patient), and the result of all this is: nothing changes. 

Drug Companies (AKA Big Pharma) do just fine. Having a monopoly on a necessary or life-saving drug makes for a good business plan for any pharmaceutical company.

Truth in Reporting

I have at least two connections to this article that may keep me from being totally unbiased. First of all, I used Xtandi for several months when my previous medication (abiraterone/Zytiga) became less effective. My short experience with Xtandi was unsuccessful. In just a couple of months my PSA skyrocketed and I moved on to chemotherapy. So, no matter how expensive it was it didn’t work for me. Bummer. And second, I have a close relative who works for Pfizer.

Big Pharma, expensive drugs, corporate mergers, and the customers will pay the price. Nothing changes under the sun. Except that everything under the sun becomes more expensive.

axman

Half-Way, More or Less

FIVE Chemo infusions completed and FIVE to go!

Here is the latest chapter in my very, very strange year of medical anomalies. After my fifth Chemo treatment (treatments are three weeks apart): The news is mostly good--very good.

1  My PSA has decreased from a high of 54 in May to 15 at the end of July!
2  My appetite has improved greatly. For nearly six months most foods tasted terrible or at best bland. All of a sudden food tastes like food again. Why? Maybe I'll never know but I will continue to enjoy eating normally.
3  And my weight has increased by more than ten pounds since May. I almost look normal (but on the slim side) again. I had to buy some new clothes to fit my trimmed down frame (bought pants in the Boys Department).
4  I am able to jog a little and walk a mile or two most days. For about an hour a day I can work in the yard, split and carry wood, or do a few household chores.
5  My tolerance of the Chemo drug has been pretty good. No serious side effects, no major pain, and I still have much of my hair. I didn't have all that much to begin with.

There are always challenges:

1  I regularly experience fatigue, take a nap or two each day, and sleep 10 to 12 hours at night. I fall asleep while watching TV and often don't make it past 8:00 pm. I fall asleep while talking to my wife (she thinks I'm just ignoring her). This is worst the first 7 to 10 days after Chemo. It gets better about a  week before the next treatment.
2  My attention span suffers from time to time. That may also be related to my advanced age.
3  I catch colds easily, have developed rashes and a fungus, and use a ton of hand sanitizer. It's hard to remember to be careful and avoid all sorts of dust, germs, and other stuff.

Cancer Survivor? We are all survivors. I have come to the conclusion that you are a 'survivor' at this very moment and you never know what will happen five minutes in the future. There are never any guarantees. That's OK.

We still plan our life as we always have. We travel, visit friends and relatives, and take on projects on the farm. But now, for example when making airline reservations, we always buy the trip insurance--just in case. Life is pretty good. Thank all of you who have cared and supported me.
Stay tuned!

axman

Is Aggressive Prostate Cancer on the Rise? Experts Disagree

In a recently published article in the journal Prostate Cancer and Prostatic Diseases, researchers report that the incidence of aggressive prostate cancer in newly diagnosed elderly men has nearly doubled since 2004. In that same time the total number of prostate cancer diagnoses has remained relatively stable. And the total number of men diagnosed with metastatic prostate cancer has also remained the same--3% of all first time diagnoses.  

Metastatic refers to cancer that starts in one location, such as the prostate, and then spreads to other parts of the body, such as the bladder, lymph nodes, bones, and lungs.

What has caused this increase? Honestly, nobody knows. Researchers have hypothesized (guessed) that there could be two (or more) reasons:

1 The U.S. Preventive Services Task Force (USPSTF) guidelines (2012) recommended that most men need not be screened. So those men might be diagnosed for the first time when the cancer is in a later stage. However, the increase in aggressive prostate cancer started long before those guidelines were published.

2. Prostate cancer has just become more aggressive, but there is no data or even a hypothesis to explain why.

Neither of these reasons adequately explains why elderly men are now at higher risk for aggressive prostate cancer. So why am I including this study here? Finding prostate cancer in its early stages has been shown to greatly increase the chances of a cure or management. Once prostate cancer has metastasized cure is unlikely and management is much more difficult.

If you are older than 55 and have never been screened, it might be beneficial to you to consider being screened.

And, in direct opposition to these findings is the statement made by the President of The American Cancer Society, Dr. Otis Brawley. Dr. Brawley issued a statement: "This study makes a dramatic claim about an issue all of us have been watching eagerly: namely, whether less PSA screening might lead to more advanced cancers. But the current analysis is far from adequate to answer that question sufficiently. Epidemiologists learned long ago that you can't simply look at raw numbers. A rising number of cases can be due simply to a growing and aging population among other factors."  

I was diagnosed with prostate cancer more than 13 years ago. As someone who now has late stage prostate cancer (metastatic Castration Resistant Prostate Cancer) I know how difficult it is to manage and how expensive it is to treat. Early diagnosis likely made it possible for me to live this long. Nobody knows all the answers, yet. Stay tuned.

axman

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

…And it Gets Worse—Really

In the three months since my last blog another series of unlikely (and life-threatening) events have unfolded. We survived the ‘strep throat,’ contracted another virus of some kind and survived that (although it took me a long time). But I kept getting weaker, having difficulty walking, and having more problems with my bladder clogging up with blood and blood clots. I was self-catheterizing every few hours, but I wasn’t able to completely empty my bladder. 

Finally I gave in and went to Emergency. After a few scans and blood tests they found that in addition to needing a Foley Catheter I was dehydrated, my kidneys were failing and I had extreme anemia. I received a blood transfusion. No bed was available for me to be admitted so they whisked me off by ambulance to another hospital where the next day they confirmed I had a serious blood infection called MRSA. Then, while treating the blockages in my bladder they discovered a bladder perforation that allowed fluids to leak into my abdomen. That’s not good. So I was immediately prepped and taken to emergency surgery.

I spent much of the next two weeks in an Isolation room because of the MRSA, with teams of doctors from Oncology, Urology, and Infectious disease coming and going on a regular basis. A lot of this time is only a blur in my mind. I received more blood transfusions, massive infusions of antibiotics and other meds by IV, pills, and injections. 

After two weeks I was finally discharged into my wife Carol’s care and went home. In the month since then she has taken care of me day and night, along with a series of visiting nurses and physical therapists. 

During this same time frame my cancer became more aggressive and metastasized into my lungs. It had been under control for more than 12 years. My oncologist decided I was too weak to start chemotherapy at the time so I tried to exercise, eat well, and sleep a lot to build up my strength. I also received another blood transfusion. It worked well enough that I have now started a regimen of IV chemo treatments; one every three weeks. So far, so good. 

I am still weak and shaky and 45 pounds lighter than I was six months ago. The MRSA is cured (it never actually goes completely away). The perforation in my bladder and 30 stitches to repair the access to it have also healed completely. I get around very well with a walker and short distances with a cane.

My next challenge is to successfully get through nine more chemotherapy sessions to stop or slow my cancer growth.

Life can change in an instant. Take advantage of every minute of every day.

axman 

A Series of ‘Really Unlikely’ Events

When you have prostate cancer NEVER assume everything (or anything) is under control

Every once in a while I share a bit of my medical odyssey for those who might be going through some of the same things or can be happy you're not. The past few months have been unusual even for me.

After more than ten years of what I thought was prostate cancer under control, just two years ago I discovered I had bladder cystitis (I have written about it several times). It involves blood, clots, catheterization, and the occasional removal of cancer tumors and growths from my bladder. That, too, seemed to be under control, more or less.

In September, 2015 I started feeling more tired than usual. I had a bout with pneumonia, started vomiting five or six times some days, and was losing weight without trying. At first the weight loss seemed good—I could afford to lose 20 pounds or so. But it didn’t stop at 20 pounds--or 30. For the first time in my life I just couldn’t make myself eat enough. So I had numerous blood tests, a few scans, X-rays, and ultrasounds. No fixes yet, but lo and behold, my kidneys were shutting down, a tumor was growing in my bladder, and my red cell count was seriously low—severe anemia. All at once! Several doctors and clinics were involved in determining all this, requiring medical coordination that didn’t always happen as quickly and smoothly as I'd have liked.

All of this is still in process, and as of today I have undergone several medical procedures to help manage these conditions.

Because there were blockages in my ureters (caused by the cancer in my bladder) between my kidneys and bladder, in early December Nephrostomy tubes were inserted through my back; one into each kidney that drain urine into external bags strapped to my legs. The tubes are still there. My kidney function has improved greatly.

The first week in January doctors removed the tumor and other cancer growing in my bladder. A week later different doctors inserted tubes (stents) from my kidneys into my bladder to unblock the ureters.

This week my nephrostomy tubes were capped and, thank goodness, urine started flowing from my kidneys to my bladder—most of the time. I still need to catheterize myself now and then.

More recently I was given a blood transfusion to improve my red blood cell count. Carol (my wife, nurse, chef, driver, and encourager) and I have spent countless hours in clinics and hospital rooms. Most of this is somehow related to my original prostate cancer.

And to top it all off, Carol and I were both just diagnosed with strep throat. I guess our immune systems aren't up to snuff (or whatever they should be up to).

Much more needs to happen before I’m back in the ‘almost normal’ category. Why and how did these things all happen now? Have some of you experienced these ‘side effects?’ Do you have any solutions or suggestions? Please share.

axman

My 2016 Prostate Cancer Predictions

...and a few musings.
After 13 years of "Adventures in Prostate Cancer," I believe I have earned the right to make a few predictions--sometimes tongue-in-cheek. And even if I don't have the right, here goes.

Q-1. Will there be a cure or partial cure for prostate cancer or any other cancer in 2016?
A-1. Very unlikely. Very complicated. And it probably has nothing to do with the astronomical profits from cancer treatment medications.

Q-2. Will new and more effective prostate cancer meds be approved by the FDA in 2016?
A-2. Yes and No! The FDA will probably approve a drug or two (the YES part). And NO, the new drugs will not likely be more effective than the current selection. This leaves room for even more drugs in 2017.
But it's a good bet they will be more expensive in 2016 (unless you can buy them in almost any other country).

Q-3. Am I really as jaded and skeptical as I sound in these first two predictions?
A-3. Again, Yes and No! Yes, it seems that in many ways cancer treatment is just another big business. Costs, treatments, and medications are prohibitively expensive and out of reach for many cancer patients who do not possess the needed resources. Big numbers trump (not that trump) individuals. No, my personal experience has included excellent medical care from doctors and nurses I consider friends. I believe they are looking out for my best interests (in spite of the fact that I am a "problem" patient). I have never had to go without the best treatments currently available.

In my head, I'm still a cup-half-full kind of guy. I believe that the increasingly serious side effects I am experiencing can be managed. I've undergone procedures I never knew existed--and there are more to go.

I'll post a step by step explanation of all my newest adventures in the new year.

axman