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 

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

If More is Better…

...then I should be more better

About a month ago I discovered that my PSA had doubled since January. It also doubled between October and January. So that resulted in yet another increase in my main meds (bicalutamide). I have gone from a daily dose of 50mg in September to 100mg in January to 150mg in April.

It’s not hard to swallow them—the pills are very small—so that’s not a problem. There is the cost factor and my razor sharp math skills have led me to the conclusion that the cost of three-a-day is triple that of one-a-day (you see, I passed 9^th grade math).

So far it appears that there is no increase in obvious side effects like green spots on my skin, appendages falling off, or decreased brain function (it’s already at an all time low). But there is one little thing that stands out; I seem to need more sleep and rest. I’m not sure that fatigue is even on the list of 437 contraindications (possible side effects) printed out on the paperwork that accompanies my prescription.

As for me, however, whatever the actual reason (age, mental breakdown, physical collapse, the heartbreak of psoriasis, or climate change) I get tired sooner, need a nap oftener, and just doing my normal daily chores (as assigned by my wife) brings on heavy breathing (not the good kind).

What’s next? Pretty soon I’ll just stay asleep 24/7 and avoid all that interfering social stuff that now goes on every day between naps.

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