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

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

Just When You Thought it was all Under Control…

If you have been on hormone therapy for a while, read this

 

I usually don’t get too excited about any study that talks in terms of “associated with” rather than quoting actual statistical support or even actual numbers, but… This report was published in The Journal of Clinical Oncology.

According to the Journal article there is an “association” between men being treated with hormone therapy (androgen deprivation therapy) and an increased incidence of diagnosed Alzheimer’s disease.

16,888 men with prostate cancer (2,297 being treated with a hormone therapy) were followed for 2.7 years. In this group there were 125 new diagnoses of Alzheimer’s disease. Overall, those treated with hormone therapy had an 88% higher risk of being diagnosed with Alzheimer’s than those men not on hormone therapy. The longer men had been on hormone treatment, the higher the risk.

There will be further studies, of course and more definitive information will be available. In the meantime, researchers and doctors do not have any recommendations for us. Don’t stop your hormone therapy just yet.

I have been on hormone therapy for quite a few years so I will be watching this drama unfold very carefully. Maybe I’d have been better off if I had never read this. Naaaaaaa.

axman

All Those Other Diseases of Old Age

This BLOG has almost always been about prostate cancer, things related to prostate cancer, or coping with prostate cancer. I have written about diagnosis, surgery, no surgery, radiation therapy, clinical trials, hormones, chemo, psychological factors, support groups, family, stages, and more. 

But to put life and diseases into some sort of perspective there are a lot of things other than prostate cancer, that can make old men sick. Really. Prostate cancer has long been the center of my world, but it is not the major cause of illness and death in old men. It’s not even the most dangerous cancer!

Heart disease is the most dangerous condition for older people, both men and women. About 25% of older men die from heart disease. So take care of your heart!

Cancer in general is the second leading cause of death in older men—23%. A majority of those deaths are from lung cancer with prostate cancer and colorectal cancer trailing behind.

After those two major categories there is a long list of life threatening things that can happen. The list includes injuries, COPD, stroke, diabetes, suicide, pneumonia, Alzheimer’s, and liver disease. None of those conditions account for more than 6% of all deaths, but we all know somebody who has had to cope with them. 

I’m not trying to preach doom and gloom; just the opposite. Most of us are living long lives and managing all those diseases and conditions pretty well. Nobody lives forever, but ‘almost forever’ is probably good enough. And having prostate cancer doesn’t mean you can ignore all those other things that could go wrong. We all need to pay attention, take care of ourselves, and have lots of fun.

axman

Drug Costs Revisited

And the costs go onward and upward…..

 

I have written a blog or two (or more) about the high and still rising costs of prostate cancer (and other cancers, too) treatment drugs.Here is another one!

The list of current FDA approved treatments for prostate cancer is rather long. Some of the approved drugs have been around long enough to be generic and not nearly as expensive as the new drugs.

I googled the drug names and drug costs of a selected few of the newer ‘miracle’ drugs. I use the term ‘miracle’ advisedly here. In clinical trials some of the drugs provided an extended lifespan or symptom free time of only a few months. So I consider these drugs to be ‘small miracle’ drugs. We are still in an era of “one size fits all,” and all patients do not receive the same benefit from a particular drug.

Personal disclosure: I worked my way through the generic drugs and graduated to one of those zillion dollar miracle drugs. For the past several years my PSA and my side effects have been more or less under control—thanks to the new medication. I discovered in my searches it is sometimes hard to pin down the actual retail cost of these drugs. Numbers seem to vary slightly depending on what site you look at and what day it was updated, so the sample list I have compiled is more or less accurate. I have included the ball park average cost. These are the basic full price costs for a few selected drugs.

A few spendy drugs

1.      Abiraterone (Zytiga): Pills taken daily. Approximately $8,500 per month.

2.      Cabazitaxel (Jevtana): Injection every three weeks. Approximately $48,000 for one course of treatment—ten injections.

3.      Enzalutamide (Xtandi): Pills taken daily. Approximately $9,000 per month.

4.      Leuprolide Acetate (Lupron): Injection. Approximate cost of three month 11.25 mg injection is $6,800.

5.      Radium 223 Dichloride (Xofigo): injection (six treatments at four week intervals) $69,000 for six injections.

6.      Sipuleucel-T (Provenge): Injection, three infusions in one month. $93,000.

Paying the Piper

Most of us don’t (and couldn’t) pay that amount, of course. The average age for prostate cancer diagnosis is 66, so most of us have Medicare, most likely Part D, and often a supplemental or med advantage program. So our yearly copays are more likely in the $5,000 to $10,000 range. Substantial but still possible for us lucky ones. Some older patients are forced to choose between meds and food and rent.

A man with no insurance would have to be rather well-to-do to afford any of these treatments. In reality, men with no health insurance just don’t take these meds. Cancer patients are at the bottom of the food chain and pay what the traffic will bear. We know it is very expensive to develop these drugs. But the cost of many drugs has increased each year since they were approved by the FDA, even after research costs have been met.

There are Co-Pay Assistance programs to help those who can’t afford the high co-pay costs. My experience several years ago was not good—I applied, filled out forms, waited, there were delays, letters, personal information, more delays, etc. I finally gave up because I needed to get started on the prescription. If you have experiences with the copay assistance programs (good or bad) please share that with me and the blog readers.

If you were to buy these same drugs in Canada, India, Japan, or many other countries, the cost would be substantially less because other countries negotiate prices with the drug companies.

Factoid: The most common cause of bankruptcy in older Americans is massive medical bills they can’t pay. 

Final Note 
Growing old ain’t for sissies—especially if you have cancer.
 

axman