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

Merry Christmas and a Happy New Year—Really

Holidays are good—for me, anyway

Keeping busy has been a good way for us not to focus on health problems. Carol and I enjoy getting together with kids, grandkids, and old friends. We do that on a regular basis throughout the year but it’s a little more special during the holidays. Family has always been important to us (even when some of our kids were teenagers and didn’t like us very much). Now that they’re all in their 40s we’ve been forgiven.

As we navigate through our 70s there are more and more health concerns—many of them minor—and a noticeable slowing down (both mental and physical, I fear). That’s all normal and so far our slowing process hasn't resulted in a full stop.

It is taking me longer to write these blogs and draw the cartoons but they eventually get posted. I never actually thought much about getting older and slower. It just happened. Worrying about aging and health doesn't do any good, anyway.

My life reality includes: cancer still sucks, treatments are improving, clinical trials are often available, life is what it is, and I’m looking forward to a great 2013.

I wish all of you a healthy and active 2013 and “give ‘em hell.”

axman