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 

It's Prostate Cancer Awareness Month--again

This is the 14th annual (I think) Prostate Cancer Awareness Month. 

I try to make a note of it each year just so none of us forget. There's not much new to say this year, but maybe just repeating the ever-improving statistics can give you an idea of the size of the problem.

1. More than two and a half million American men are living with prostate cancer or have been diagnosed and treated for prostate cancer.
2. 238,000 American men will be diagnosed this year.
3. Nearly 30,000 men in the U.S. will die from prostate cancer in 2013.
   

There is a trend for more men to be diagnosed with prostate cancer each year and fewer to die from it. That's good. Most men with prostate cancer will die from some other cause. Heart disease is the most common cause of death for men with prostate cancer. That makes sense--the median age of diagnosis is 66 so many men already have other health concerns.

My ten-year survival is not uncommon. Good doctors and new treatments have made a difference. Funding by the National Cancer Institute and donations to the American Cancer Society and other non-profit organizations have helped make research possible. Cancer research is very expensive and 'awareness' months have helped bring in money for research and improvements in treatment for other cancers as well. For example, I am taking a medication that was not available to me a couple years ago. I am able to live a more-or-less normal life largely because of medical research and clinical trials. Woo Hoo.

I'm still awaiting that magical time when the word CURE is at least as common as TREATMENT or MANAGEMENT.

axman

The Good Years

OK, OK, all years are good years (if you really want them to be). 

Just about everybody has plans for retirement and the golden years. But by the time retirement comes around nobody knows for sure what mental and physical condition they'll be in. Some people golf, play tennis, and compete in Iron-man competitions year after year (show-offs). Some have physical problems and may need a walker, cane, or even a wheel chair. Strokes and other conditions can affect speech and memory. Others have diseases like

Parkinson's, diabetes, MS, or cancer. You can't know for sure how these diseases will progress--and reality can change rapidly. None of these conditions will necessarily determine whether or not you're positive and happy.

When my wife and I retired she already had type II diabetes and I, of course, had prostate cancer. We had very little idea of what might actually happen in the future. Both of us have benefited from advances in medical science but not so much from the advances in medical costs. So far we have been able to do everything we hoped to do in retirement (as long as we work around the doctor appointments). We're told that our increasing aches and pains, slower movements, and memory lapses are normal for our age. Who defines 'normal?'

I am reluctant to share this, but it seems the busier we are the better we feel. So much for laying around and being lazy (all the time). It appears all this activity really is good for me--or so says my wife (who is the world champion maker of to-do lists). I encourage you to be as active and busy as you can. These really are the good years--I think.

axman

Birthday Blog--2013

Every year I write a Birthday Blog to celebrate still being around. This is a Blog and it is my Birthday, so...

This year is the tenth anniversary, to the week, of my prostate cancer diagnosis. My ten year report includes:

1. Being alive--with medical data to prove it
2. Staying active, more or less, as long as I get my daily nap
3. Financially supporting both the medical and drug industries
4. Still writing blogs and the occasional book--which works best when I can remember the words and how to spell them
5. having less hair, more aches and pains, and a foggier memory

The good news is there is an ever increasing number of new prostate cancer treatments and medications. One by one they have helped me keep going. Most of them worked for a while--until they didn't.

The less good news, of course, is that none of the new meds or treatments will cure me or anybody else.

The end (of the Blog, not me)--for now.

Addendum: It amazes me how fast ten years has passed. The next ten years will likely pass even faster. So I'm going to start my Birthday Blog 2023 tomorrow.

axman

A REALLY Good Month

It's time to celebrate when a new treatment actually seems to work!

Over the past several months I have rambled on about high drug costs, the high profit margins of big pharma, and shared my skepticism about all the miracle drugs. None of my opinions has changed much--but--

I am pleased to announce that my PSA, which had peaked at 27 in May, has dropped to 1.3 (note placement of decimal in that number) in only two months! I would never have believed that it could or would happen (to me, anyway). Since I started taking abiraterone (Zytiga) at the end of May I have had very, very good results. Two months is not very long and there is always the possibility that the good effects won't last, side effects will become intolerable, or I will be hit by a bus. But for now I will enjoy the good news. This is my lowest PSA number in almost nine years. Woo Hoo. I'll drink to that! In all honesty, if it was my highest PSA number I'd also drink to that.

For the past eight years I have continuously been on one or more forms of hormone therapy. None of the previous pills or injections reversed, stopped, or even slowed the rise of my dreaded PSA for more than a year. Abiraterone is the first treatment that actually significantly lowered my PSA. I certainly hope this is more than a passing fancy.

Time will provide the answers--it always does. I know there are no absolutes in cancer treatment--no two people respond in exactly the same way to any treatment. But, so far, I'm getting my money's worth.

axman

Holy Mackerel, Batman!

The media is telling us guys with prostate cancer that fish oil could make our condition worse!

A 2011 study has been replicated in 2013 and shows a correlation between high levels of fish oil consumption and increased risk of aggressive prostate cancer. High level is defined as one fish oil capsule a day and/or eating fatty fish, such as salmon, twice a week. Note that it says correlation and not cause.

Researchers at the Fred Hutchinson Cancer Research Center, in Seattle, released a study showing that high intake of omega-3 fatty acids is correlated with a 71 percent increased risk of high grade prostate cancer and a 44 per cent increase in the risk of low grade prostate cancer. They analyzed data from an earlier study of the effects of selenium and vitamin E in preventing prostate cancer (neither did). The analysis included 834 men who had already been diagnosed with prostate cancer and a comparison group of 1,393 men who were cancer free. The results have been published in the online edition of theJournal of the National Cancer Institute.

What does that mean for all of us who have been taking fish oil capsules and eating fish as often as possible for years and years and years? As far as I can tell, nobody knows for sure (yet). Should we stop taking fish oil capsules and eating fish? Some researchers say yes, stop now. A few say we should carry on as usual, and a very few suggest that this whole thing is a socialist plot to destroy big pharma (and maybe save fatty fish). It would probably be a good idea to talk to your oncologist before you make any changes in your normal routine.

For many years I took a whole handful of supplements every day. Slowly, researchers suggested that I would likely not benefit from selenium, vitamin E, large doses of vitamin C, and even multiple vitamins. Is my D3 and low-dose aspirin still safe? Some researchers suggest that most people don’t need any supplements whatsoever.

If we wait a few more months or years the rules will change again—and again. What’s a guy to do?

axman

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