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

A Brief History of 2014

1-I'm Still Alive! Is that brief enough?
2-My prostate is still gone (since 2003) and is unlikely to grow back.
3-My PSA is remaining low--my medications seem to be working. For the cost, I should be cured.
4-Hormone therapy side effects are still alive and well and help bring out my 'feminine' side.
This part of the update has been about the same for a few years now.

2014 additions and challenges...
1-I discovered a new side effect in February. It's called Radiation Induced Bladder Cystitis. Nine years after radiation therapy no less. It is not easily treatable so many of us who had radiation before or after prostate cancer treatment are now living with bleeding and clotting in our bladder. Annoying but not life threatening.
2-A pesky mole on my back turned out to be cancerous-a
Melanoma. The surgeon got it all, put in 33 stitches and that was that...except for some other moles that will also need to be biopsied.
3-With each passing year I get slower, forget more, and spend more time getting injected, inspected, bled, scanned, and being told that, "You're doing pretty good for someone your age."

Conclusion
Life is good and I intend to make the most of it.
Enjoy

axman

2014. So Far--So Good

New and better treatments abound--can cures be far behind?

There seems to be a new med that helps manage prostate cancer introduced every few months. Well, maybe not that often, but there have been a few. That is certainly good news for all of us with incurable prostate cancer. I'm taking one of the newer meds and my PSA has gone down to practically nothing (0.4 actually). That doesn't mean the nasty cancer cells have gone away, but they are growing slower--I may die of extreme old age, yet. There are many who may consider me extremely old, already.

I haven't heard that any of the new 'miracle' treatments are likely to lead to a cure, but the longer we all live (thanks to the new meds), the better the chances that somebody in a dank and gloomy laboratory somewhere in Lower Ebonia will have that 'eureka' breakthrough moment and cancer, like polio, can be wiped off the face of the earth. More or less.

Maybe I'm hopelessly optimistic but I expect a cancer cure in my lifetime. But then I also expected to have thick curly hair, a thin and athletic body, and 20-20 vision throughout my lifetime.

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

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

Confusion Reigns

…so everything is just about normal.

If you have had prostate cancer for a while you may have noticed that there has been a lot of published research in the past several years designed to clarify the diagnosis and treatment process of the disease. Had you been paying attention you would have learned (from respected researchers) that:

•      Guys who are healthy and have never had a PSA test should generally not be tested. There is no survival advantage and there is the possibility of over treatment.
•      Some guys should be tested with the PSA if they and their doctor think it’s a good idea (for example if it runs in the family). And similar research in Europe has shown there does seem to be about a 20% survival advantage to having regular PSA tests.
•          Younger men, newly diagnosed with slow growing prostate cancer, show no survival benefit from surgery. What about those with faster growing tumors or a high PSA?
•      Older men, newly diagnosed, show no survival benefit from surgery. Too bad.
•      Treatment of any kind may not show a significant survival benefit.
•      Treatment saves lives or extends lives for some (different researchers).

So, armed with this definitive scientific information, you and your medical team can confidently plan a treatment (or non-treatment) regimen to keep you as healthy as possible for as long as possible (don’t you feel more positive already?). I would certainly like to show a survival benefit. So far I’m surviving and that is definitely a survival benefit to me.

Every man’s experience with prostate cancer is different, every man’s choices are a little different, every man’s attitude is a little different, every man’s response to treatment is a little different, every man’s tolerance of medical side effects is different, but we all hope it works for us.

Nobody really knows what will work for any individual at any time. This is a good reason to be seriously involved in your own treatment. You know how you feel, what you want, what your side effects are, and what you are willing or not willing to do or tolerate.

axman

Prostate Cancer, Statistics, and YOU!

 More than 12 million Americans have cancer and about two and a half million of them are men with prostate cancer. That’s a lot.

There are new drugs in the clinical trials chain that have the promise of prolonging life and quality of life. There are controversies about high costs of trials and drugs and the ongoing PSA wars (trust me, the final verdict on testing or not testing is not in). There are statistics about survival advantage, impotence, incontinence, harm vs. benefit, and on and on. It never ends (which is probably a good thing in the long run).

But for us two and a half million, it’s a very individual thing. I know a lot of guys with long term prostate cancer and no two of us are getting exactly the same treatments (unless we’re in a trial). It all depends on factors like age, overall physical condition, speed of cancer growth, resistance to certain drugs, allergies, tolerance of side effects, insurance coverage, and some things I probably have never heard of.

The bottom line (according to me anyway) is to focus on your needs, talk to and listen to your medical team, look for the things that might help you, and don’t expect a miracle cure just yet. 

Whatever the ‘statistics’ and the ‘experts’ say, you are not just a number—ok, you’re actually number one. Any given drug or treatment will either help (100% effective) or not help (0% effective) you. So don’t get caught up in all the numbers hype. All those statistics might not have anything to do with what’s best for you!

axman

How Much do You Really Need to Know About Prostate Cancer?

Is less better? Can too much information be detrimental to your health?

Whether or not you have prostate cancer or have even been tested for prostate cancer you've probably heard about the recent PSA testing controversy. If you have never had a PSA test, should you have one or not? Some experts say no, others say yes. Are you better off knowing or not knowing what your PSA score is? It's actually not such a simple choice.

Real Men Get Prostate Cancer Too looks at the pros and cons of having or not having PSA tests and the choices you may, can, or should make either way. And you're the one who has to make the final choices. Unfortunately there are no easy answers or general recommendations that will work for every man.

axman

Some Days are “Less Better” Than Others

Or maybe it just seems that way

Is it better to know or not to know? That, of course, is part of the great PSA debate I’ve talked about before, but also a question for those of us who are five or 10 years down the prostate cancer pike.

For the past nine years I have had a PSA exam at least once every three months. After surgery it told me that they didn’t get it all. My PSA doubled every three months for the year after surgery. Then there was radiation therapy and the same thing happened. Two possible cures that weren’t...It happened and I adjusted.

Since then I have tried experimental drugs (Clinical Trial) and a bunch of hormone therapy drugs—pills and injections. My PSA has slowly gone up and slowly gone down—generally within the rather small range of 2.5 to 4.8. Not bad as far as I’m concerned. So when there was a bigger increase over a short period of time it was a bit unusual.

My last PSA jumped (almost doubled over six weeks) a bunch. It was already on the rise so I shouldn’t have been surprised (but of course I was). I know some meds work for years, some for months, and some not at all. I really did know that. I also know that there are more meds to try and surely one will bring my PSA back down and my comfort level back up.

Would I have been better off had I not known all those numbers? Would I have been more comfortable just assuming all was well? Not a chance. Ignorance is not bliss. What do you think?

axman

How Your Mind Can Play Tricks on You

At least mine does—all the time

For almost nine years I have dutifully gone to see my oncologist every three months to assess my prostate cancer condition. And I always experience a little dread (maybe my PSA has gone hog wild—hasn’t happened so far) but there is also that glimmer of hope that it has gone to zero and I’ll live happily ever after (of course that hasn’t happened either).

The PSA isn’t even all that accurate, but for those of us with ongoing prostate cancer, it’s the best measure we currently have. The week before the oncologist appointment there are blood tests and sometimes other tests as well. No problem. It’s finding out the results that’s brings on the anxiety. In my case, my blood pressure spikes every time.

Worse yet, many of us guys (including me) probably put too much stock in the results of those tests—an increase in PSA is discouraging and a decrease is encouraging. That makes sense except for the times it’s not logical. E.g. if a PSA score goes from 5.1 to 5.5 (not even statistically significant) it feels like bad news. If the PSA goes from 91 to 89 (again, not statistically significant) there is a feeling of new hope. So the numbers don’t seem to be as important as whether they trend ever so slightly up or down.

My PSA scores have had ups and downs like a mini roller coaster over the years. Except for a brief time after surgery and radiation (when it was nearly zero) it has fluctuated from two to four to three to five and back and forth depending on the current treatment and how long I’ve been on it. No treatment has helped for more than a year or two. Some new medications help immediately and some don’t help at all. There are many, many meds yet to try so this situation is likely to go on and on and on...

I don’t think about these things very often and most of the guys I know who are in my condition (just dropped in to see what condition my condition was in) say the same thing. 99% of the time I’m positive or oblivious, and then there’s that 1% of the time when I fall prey to mind tricks, emotional reactions, and the failing logic of ‘what if’. But this won’t be a problem for another three months, so let life go on.

axman

To PSA or NOT to PSA--A Man's Dilemma

...another controversial medical recommendation

Recently, the USPSTF (U.S. Preventive Services Task Force) published a recommendation against routine PSA screening for men of all ages. They cited numerous clinical studies (some inconclusive or contradictory) showing no statistical survival benefit for men getting regular prostate cancer screening with a PSA compared to those men who did not have a PSA screening.

Further, the report pointed out the risk of men having unneeded and risky treatments that could result in impotence, incontinence, infections, heart attacks, and other unpleasant side effects.

There is no way to determine from a PSA test whether a tumor is aggressive (life threatening) or slow growing (not life threatening). A biopsy can help determine the growth rate of a tumor but there is some risk of infection (albeit small) from that invasive procedure.

So, they contend, no screening is better for the 5 out of 6 men who are likely to never get prostate cancer. And of the 1 in 6 who will get prostate cancer some will have a slow growing type and will not need immediate treatment.

But what about those poor guys (like me) who have or will have an aggressive (life threatening) tumor in their prostate? Although statistically not significant, determining risk and getting treatment early would be really helpful‑‑maybe even life saving.

Maybe the problem is not with the PSA test, which can detect cancer, but with the decision making by doctors and patients after the test. Could this, perhaps, be an area for further study?

I have had and will continue to have PSA tests on a regular basis. I know a number of men who are being treated for an aggressive form of prostate cancer. To a man they are happy to have been diagnosed and treated and still be alive. Me, too. We do not believe that our lives are not significant. The discussion is not over. There must be a better solution!

axman

The Next Step – Lupron

With a shot in my backside I was launched into a new phase of prostate cancer treatment...

I knew this day would come sooner or later (I’d prefer later‑‑given a choice). My substitute oncologist (Dr. G) recommended a change in medication because my PSA has gone up significantly every three months for almost a year on the old hormone meds. Lupron was her drug of choice. It’s stronger than the hormones I’ve been taking and is supposed to lower my PSA in a short time (stay tuned for my October PSA test). I know many thousands are already using Lupron, so let me know what your experiences have been.

The shot is good for three months so I don’t have to take so many pills—that’s a plus. But the side effects may be a little stronger and stranger. I can expect hot flashes, some bone pain, headaches, depression, and maybe weight gain (I can probably fight those last two). On the inside my bones will likely lose mass. So I’ll take more calcium, more D3, spend time in the sun, and get lots of exercise. Fatigue in another side effect but I’m already tired so may not even notice.

I intend to let the summer unfold, bask in the sun, keep busy building more rooms onto the house, and continue doing all the things on my Bucket List.

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

Why Doesn’t My PSA ever go Down?

Don’t I wish…

Every couple of weeks I put something on my blog that relates a lot or a little to my prostate cancer. It’s easier to write about other people and other issues. After my visit to the oncologist last week, I guess it’s time to focus on me again.

After nearly eight years, my prostate cancer is pretty well under control; managed but not cured. It’s still there but seems to be pretty quiet. But my low PSA doubled from September to December and again from December to March. That hadn’t happened in more than three years – since I started taking low dose hormones. My prescription was doubled in December and increased again just last week.

Most guys with incurable prostate cancer know that sooner or later, whatever treatments and meds they’ve had, their cancer will find a way to grow anyway and their PSA will increase – and increase. There are several levels of medications and I’m still at (almost) the lowest hormone treatment level. There is an inevitable progression once prostate cancer isn’t cured by first level treatments.

Progression is slow, no need to worry, no need to make any new decisions just now, but there will be a time when I’ll go to another level of treatment – maybe instead of pills, it’ll be delivered by injection or IV. Maybe there will be new medications to try or new and promising clinical trials. I’m not holding my breath waiting for a cure just now.

I’ll take my increased meds (hopefully my prescription plan will still pay) and wait and see. There really aren’t any changes in diet or exercise or lifestyle that might make a difference – I’ve tried to do all the right things already.

axman

Maybe the PSA saves lives after all - NCI study

Federal Government Reverses Course,Now Sees Benefit of PSA Testing...
NCI Admits its Previous Prostate Cancer Study was ‘Contaminated’ Following the Release of New Data that Shows PSA Test Saves Lives

The nation’s leading authority on cancer has thrown out its own study on prostate cancer screening, now saying that PSA testing reduces the prostate cancer death rate by nearly 50 percent.

In its July 13th bulletin, the National Cancer Institute says findings from the Göteborg Randomized Population-Based Prostate Cancer Screening Trial - a study NCI partially funded in Sweden - shows “PSA screening substantially improves cancer-specific survival without the extent of over-diagnosisand overtreatment.” The Swedish study showed testing reduces the prostate cancer mortality rate by 44 percent. That prompted NCI to admit there was a “significant amount of contamination” in its earlier Prostate, Lung, Colorectal, and Ovarian study (PLCO), which suggested there was no mortality benefit with the PSA test.“Careless mistakes like this may be costing men their lives. You can’t publish that there is no value in getting tested if you don’t have the right data to back that claim up,” said Skip Lockwood, ZERO’s CEO.

“Admitting you were wrong is the first step - the American Cancer Society has yet to swallow its pride and come clean – so now NCI needs to take action to make things right,” said Lockwood.
In the bulletin, NCI says the PLCO data was contaminated because of “men in the trial who had already undergone screening with a PSA test, which a number of researchers have said may preclude the trial from ever demonstrating a cancer-specific survival improvement.” Regarding its new data from the Swedish study, NCI goes on to quote Dr. Eric Klein of the Glickman Urological and Kidney Institute who says the “data suggesting that a baseline PSA in men in their 40s and subsequent PSA velocity (the rate of increase in PSA levels) can predict both lifetime risk of developing cancer and potentially lethal cancers.”

Medical Science, Black Magic, and Dumb Luck

Prostate Cancer Treatment in the 21st Century

I follow a few blogs, medical sites, and government sites that focus on prostate cancer. As an old geezer with incurable (but not untreatable) prostate cancer I am looking for hope and progress – something credible that might slow growth, shrink tumors, kill cancer cells, and let me live happily ever after. There are a lot articles and anecdotal stories that tout green tea or pomegranate juice or some drug not yet approvedas a miracle cure. It does appear that more men are living longer – that’s good.

But, there does not seem to be a cure on the horizon – guys keep dying while waiting for something to happen. Every once in a while somebody claims to be totally cured after suffering for six or sixteen years, or their macrobiotic diet shrunk their tumor to nothing, or eating flax seeds while living in clean mountain air has lowered their PSA from 842 to 1.2.

My PSA has stayed about the same for the two years I have been on hormone therapy, but all the data points to a time when the hormones will no longer slow prostate cancer cell growth. Nobody seems to know why it works for two years for some guys and 10 years for others. I’m hoping for 10 years – or more.

Answers would be nice. Even knowing the right questions would help. For now I can more or less accept my role of keeping on keeping on. Let me know if YOU have either good questions or good answers.

axman

The PSA Test – to be or not to be

What’s a guy to do?

In recent weeks and months there has been a lot written and said about the PSA (prostate specific antigen) test that men have been getting for several decades to help detect prostate cancer.

Some doctors and researchers are condemning the test as useless or even harmful and others defend it. What should us poor guys (who need the information) do? I’m way past the diagnosis part but I get PSA tests every three months to help determine the amount of hormone therapy I get. That seems to work for me.

Opponents say that PSA tests result in a lot of unnecessary treatments – surgery, radiation, freezing, and other options. And those treatments can lead to impotence and incontinence. That’s true - those side effects do happen. Common sense and patience might help. The PSA test is less than perfect but what is plan B? Nobody seems to know.

Increased PSA doesn’t necessarily mean you have prostate cancer. But results can provide information you need to weigh future decisions about your condition.

If you have never had a PSA test, check out organizations that you trust for more information and certainly talk to your doctor. What do the experts say? Check out the Mayo Clinic and American Cancer Society guidelines. They’ve changed over the years. Whatever their recommendations are you and your doctor will still need to talk and decide.

Mayo Clinic – PSA Guidelines http://www.mayoclinic.com/health/prostate-cancer/HQ01273.

American Cancer Society – New PSA Guidelines http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Revised_Prostate_Cancer_Screening_Guidelines_What_Has--and_Hasnt--Changed.asp.

I’ve had many PSA tests and will probably have many more. Every man has to look at all the options and decide for himself. What do YOU think?

axman

Second Opinions? Why?

I know, I know you’ve heard this a million times (well a lot anyway). “Always get a second opinion.” Is it necessary? If you get the same information the second time you may think it wasn’t necessary. But without more information how are you to know?

There are some benefits you might want to weigh…

• The first diagnosis may be wrong. It could happen. PSA tests are not 100 percent reliable, DRE exams are not always reliable either. Without more information you may be making a decision that you could regret later.

• A second opinion could suggest that, although you do have prostate cancer, no immediate treatment is necessary (watchful waiting).

• Another doctor or another clinic may suggest more or different alternative treatments. Surgery, radiation, hormones, freezing, pellets… Of course that means more decisions for you.

• And maybe a second exam and opinion would give you more peace of mind and support in making the very difficult decision about what you should do – and the decision IS yours.

How did you decide? What decisions are you contemplating now?

axman

Look for the Good News

My definition of health, happiness, and quality of life has undergone some significant changes over the past seven years. Since I was diagnosed with prostate cancer my health news has not been consistently good. There have been snippets of good news along with the progression of my recurrent cancer. This week I experienced one of those snippets of good news that has me smiling - at least for now.

Progressions - Good News has Many Definitions

• Seven years ago - the good news was that I had NOT been diagnosed with prostate cancer and there was no possibility in my mind that I ever would be! I was invincible.
  



• Six years ago - the good news was that my surgeon told me the tumor was encapsulated and the tumor and my cancer had been successfully removed. Survival is always good news.



• Four years ago - the good news was that after 37 external beam radiation treatments my recurrent cancer was gone - again - and my PSA was near zero. And the sores and weakness would pass.
  



• Two years ago - the good news was that I was accepted into a clinical trial that looked promising for slowing my ever-increasing PSA. Potential good news, anyway.
  



• One year ago - the good news was that I started taking two hormone medications that almost immediately started to lower my PSA. Good news, but no cure.
  



• One week ago - the good news was that my PSA was low enough that I could stop taking ONE of my hormone pills - for a while at least.



• Next month - who knows? As long as my definition of Good News is flexible I can keep looking.
  

So now I'm happy to be as healthy as I am for as long as I can. The rules and the reality keep changing. I hope I can keep up. I'm sure I can.

axman

What's New in Prostate Cancer?

The latest controversy in Prostate Cancer is whether or not men should even be tested - particularly using the PSA test. Recent published studies suggest that PSA testing is not all that accurate and may lead to unneeded treatment and the risk of serious side effects such as incontinence and impotence. And, the studies suggest, diagnosis and treatment may not extend your life anyway.

It is true that treatment (surgery, radiation, freezing, radioactive seeds) can lead to serious side effects. Most men who are diagnosed with prostate cancer do not die from prostate cancer. So is there any benefit in being diagnosed?

Being tested and/or diagnosed gives you some choices. You can always choose NOT to have treatment, but you might also choose to change your lifestyle, try a different diet, or look for alternative treatments.

Every man has to decide whether or not to be tested. It would be nice to know ahead of time whether you were at risk for a fast-growing tumor or if you would likely not even need treatment (watch and wait). If your father or brother has prostate cancer your risk is higher. If you are African American your risk is higher.

I was diagnosed with a fast growing tumor and had it removed. My cancer came back but I'm still alive. For me it was better to know and have a choice. I believe that I'm alive today because I had treatment. I have been able to manage my condition with medication, diet, weight management, and by remaining active. So far so good.
axman

What do you think? Write a response.