…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

Miracle Cures, Breakthrough Drugs, Game Changers, Cancer Cure Diet, etc…..

In addition to the terms and phrases in the title, you might recognize these additional phrases:

• Now I’m cancer free: you can be, too
• A miracle diet cured my cancer
• Your doctor doesn’t want to cure you, but WE do
• Drug companies don’t want a cure for cancer (hmmmm, that one may need further research)
• I smoked my way to being cancer free
• Our injection was 100% effective in curing cancer in mice

 It must be true; it’s on the Internet

I spend a lot of time (probably too much) browsing the Internet for new and interesting information about cancer. Some of the terms and phrases above are from actual advertisements for FDA approved medications. 

It seems, from my less than comprehensive searches, that there are thousands of absolutely true, guaranteed, time tested, and anecdotally proven cures for cancer available for direct order on the Internet. So why do I still have cancer?

Equal Opportunity Internet

Anybody can advertise whatever they want about anything (mostly) on the Internet and then ask for your money so you, too, can be cured (or conned). There are many who are willing to pay to find out if these claims are true. Maybe those herbs, special mixtures, supplements, diets, and magic beans will actually cure me. But then I also know that truth in advertising is not the norm on the Internet. What we do know is that by buying these products online we are helping to improve the seller’s bank account, wherever it might be.

Why would we even look at these dubious, not very scientific, and highly hyped “cures?” Maybe because many of the very official, very expensive, scientifically tested, and approved meds we now take don’t keep us alive much longer than if we didn’t take anything. Obviously there’s a living to be made in the alternative treatment buy online world. But beware my friends. Anything that sounds too good to be true….you know the rest.

Bottom Line

It’s hard to know who or what to trust in the high profile cancer treatment world. I am sticking with my medical team for now. If something on the Internet looks promising, I’ll ask my medical team first. 

And I know there are some things I can do for myself. I have been doing most of these things, actually, and I’m still alive so they must work.

• Eat a healthy diet (you know what that means for you)
• Exercise moderately and often
• Manage your weight (get medical help if necessary)
• Manage your cholesterol and blood pressure (get medical help if necessary)
• Don’t smoke at all, period
• Don’t abuse alcohol (define abuse for yourself)
• Talk to your doctors and also listen to them. They probably have your best interests at heart. If they don’t, fire them.

 Doing these things will very likely NOT cure your cancer, grow hair, or help you win the lottery but you might feel a little stronger in your battle. 

axman

So Chemo is Good for You Again?

You men with incurable prostate cancer have probably heard at least some of this. In recent years men with advanced prostate cancer were usually given chemotherapy only when everything else failed. When your Dr. said, “Let’s try Chemo,” you (or at least me) figured you were almost dead. In a world where cancer drugs showing ‘significant survival benefit’ keep you alive 3.7 extra months, it’s easy to be skeptical of new claims. 

But wait, things are changing…

A recent article published by Medscape reports changes in the use of chemotherapy. Several recent studies have shown that adding chemo BEFORE the hormone blockers (such as abiraterone and enzalutamide) have failed can lead to ‘significant survival benefit’ for many men—in the 17 to 22

month range (on average). That’s good. Docetaxel, a plant based chemotherapy agent, was used in the studies. It has been around nearly 20 years but just recently used earlier in the prostate cancer treatment cycle. 

Men using hormone blockers and who also have metastatic prostate cancer have been treated with docetaxel infusions while the hormone blockers have still been effective. Those men lived significantly longer than men who did not start chemo treatment until the hormone blockers became much less effective.

But there can be side effects…

Side effects are common. Most cancer meds come with some unpleasant side effects. Docetaxel (like other chemotherapies) has side effects that can be serious enough that some men can’t tolerate it. 

Side effects can include:

•         Being allergic to docetaxel
•         Increased risk of infection, red and white cell blood counts low
•         Nausea 
•         Diarrhea 
•         Mouth sores 
•         Weight gain
•         Hair loss (for those who still have hair)
•         ….and more

So when your doctor brings up the subject of chemo—don’t panic, it just might be worth your while (and a few extra months) to consider the possibilities.

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