Beginning Chemo

 On October 8, 2015 I begin chemotherapy for my prostate cancer. The drug being uses Taxotere apparently the usual drug to use in this situation. Since the first treatment I have not had so far any of the usual side effects such as hair loss or metallic taste but I am having ongoing problems with my lower G.I. system. I will detail of these in later blog.

A daunting rise in PSA

September 11, 2015

I found my most recent PSA checkup on Sept 8 daunting.  After I began using Zytega in early July, the PSA dropped from 350 to 89 in just 3 weeks.  Wow, was that encouraging.  On September 8 the PSA was up to 260.  It will be measured again on September 22. If it goes up, I will start a new medication and if it goes down, I will stay on Zytega.

Of course after that spectacular drop, the recent results were disappointing. I try not to let myself hope for good things, but I admit I hoped that after the spectacular beginning, the number would be even lower. 

The daunting part comes from my realization that I really am in an end of life situation.  I have always been able to avoid that awareness. Oh, I had it, and acknowledged it verbally, but never really in my gut. That happened the other day. It is not particularly scary, as I have known for years that it would happen. I just wasn’t prepared; it caught me off guard.

I just had a friend die of cancer and earlier this summer another one.  For both of them they were basically OK and lively even though what they had was, they knew, terminal. And then one day it set in and within a short time, 2-4 weeks, they had died.  I finally realized that this could happen to me at any time, beginning tomorrow.  Like I say, that caught me off guard.

I am basically not sure how to handle this. One part of me says, Carpe diem!—we have done that all summer: trip down the Mississippi, trip to Denmark, month with son and family in Seattle.  And another says, Start getting rid of stuff so life is easier for Mary after I am gone and she doesn’t have to clean out all the stuff I have collected over the years.  I think I will work on that in the upcoming weeks.

I am not sure what to say. Getting my head around this is taking a bit.  I am resolved to not crumble to cancer and its inevitable end.  I am resolved to be even-keeled and funny to the end. But still, when the realization that it could begin any day occurs, there is a hard couple of hours. 

Aricles dealing with prostate cancer

During the past few weeks,  friends have sent me two urls that lead to articles regarding prostate cancer treatment. I post them here for whomever.

1. Repurposing itraconazole as a treatment for advanced prostate cancer: a noncomparative randomized phase II trial in men with metastatic castration-... - PubMed - NCBI

http://www.ncbi.nlm.nih.gov/pubmed/23340005

2. Link between high blood levels of omega-3 fatty acids and prostate cancer - Fred Hutchinson Cancer Research Center

http://www.fredhutch.org/en/news/releases/2013/07/omega-three-fatty-acids-risk-prostate-cancer.html

Some thoughts on precision and decision

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[Note; the following piece begins with old information. My PSA did go from 14 to 50 and then it went up again to 350. At that point my oncologist switched my treatment to prednisone and Zytiga.  Three weeks after I began that treatment, my PSA declined to 89. I will not have a followup reading until the middle of September. The rest of the piece is my ruminations about this disease. To see another view of this, see my previous entry which is a letter to my nephew about the same issues.]

My PSA recently increased from 14 to 50. This increase occurred after the PSA had decreased from 22 to 14. The decrease occurred during the first two months that I was taking a twice-daily dose of dexamethasone. The increase occurred during the second two months.  I am now waiting until the end of May to discover whether continued use of dexamethasone will again reduce my PSA or whether it “fails” and I need to begin a third medication.  As I understand it if the third one also fails there is a fourth and then chemo.

After I announced this development my nephew wrote to me asking for an explanation in layman’s terms of PSA. I couldn’t supply it and after reading various websites, still can’t.

The two issues have caused me to look closely at the biology involved and my emotional state. At this point I feel imprecision and indecision.

One dimension of the imprecision is the process of PSA at work in the body.

PSA means prostate specific antigen. The prostate produces PSA (http://www.cancer.gov/cancertopics/types/prostate/psa-fact-sheet ). These two definitions are relevant. (1) An antigen “is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment, such as chemicals, bacteria, viruses, or pollen. An antigen may also be formed inside the body, as with bacterial toxins or tissue cells” (http://www.nlm.nih.gov/medlineplus/ency/article/002224.htm). (2) An antibody is “a protein produced by the body's immune system when it detects harmful substances, called antigens. Examples of antigens include microorganisms (bacteria, fungi, parasites, and viruses) and chemicals” (http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm ).

This seems clear. Antigens are bad. Antibodies are good. But then my questions begin. Why does the prostate produce antigens? Does a part of my body produce PSA-fighting antibodies? What does a rising PSA really mean? Because I have had my prostate removed what in my body is creating PSA now? Is the rise and continued production related to tumors that have formed?

When I read various sites, I find the definitions, but not the description of the process. The sites quickly move to discussions of the PSA blood test and the effectiveness of screening. Those discussions are very clear, but they seem limited to the test and not the far-ranging biological process or the emotional reaction to the increase.

Another dimension revolves around the meaning of my original Gleason score of 9 and the fact that even in the prostatectomy the surgeon removed part of my vas deferens. At this point I have a biopsy-identified tumor in my iliac crest--a bone in my hip structure, and two other probable tumors in my abdominal cavity.

What do those facts mean for me in terms of quality of life and life expectancy?  When I read websites about them I find very technical descriptions, some anecdotal stories of maintaining ones calm, and calming stories of the “there will always be help and comfort at the end.”  None of them are useful to me.

I have found it hard to know quite how to react to my rising PSA. When it first started to go up, my urologist told me that I was “not at risk” (of dying soon) but that I could have quality of life issues. Exactly what those are, or could be, is not clear to me. After the PSA climbed above 2 the urologist said he had done all he could and that I would now need to see an oncologist, which I am currently doing. The oncologist is very focused on the PSA number and some other questions that I will discuss in a minute.  The goal is to control the number, to prevent its rise. If it rises, the oncologist switches the medication. So far I have been on two medications and expect to begin a third at the end of May.

The questions he asks have to do with discomfort. How am I feeling? Do I have pain?  I answer “no.” I feel pretty good. I work out with weights three times a week and rock climb once a week.  I have noticed no diminution of my ability to perform at either activity.  I have increased my skill level at rock climbing.  Once I answer in this manner, the discussion of discomfort ends and we are back to the numbers.  At the last appointment the oncologist told me that rising PSA might not mean as much bad as it could if it is accompanied by a stable body health.  I have both.

The indecision is the result of the issues with the health description. The basic feeling that I have to fight is What is the use? Why bother?  I find that this reaction occurs both to the prescribed course of treatment and to almost any decision relating to my future, such a planning a trip.  If it takes about 4 months to determine whether a medication is working, and if I have two more medications to go, then in eight months or around the end of January 2016 I will begin chemo. What should I plan for 2016? You see the issue? It is a tough one to negotiate.l

 I have done some reading. Prostate tumors come from prostate cancer cells that have travelled to a new location. Well, OK.  But what does an increase in PSA mean?  That there are more tumors?  That more cells are making PSA? I don’t know.

Today, though, I can talk about how the two issues—indecision and imprecision—come together.  I have blood in my urine today after none for about three weeks. It is a bit thicker than usual and it has passed on four consecutive urinations. Usually the bleeding stops after two. The first bleeding often passes a clot with blood and then the next bleeding seems to clean out the residual blood. I have seen the clot in three of the urinations. The first one happened while I was defecating; if there was one, I didn’t see it.

OK, now for the interaction. What does this bleeding indicate? Why has it started up after a three-week layoff?  Well, this week I changed my diet.  I have gone to a heavily plant based diet. We have only had meat one day this week, chicken last night. We had trout one night and two nights were vegetarian. I am eating a half avocado a day. There is some indication that avocado contains a chemical that might fight the cancer.  I also drank my first cup of green tea yesterday, a practice I expect to continue regularly.  Did the diet change cause this bleeding?  I suspect not , but I am not sure.  So, should I continue on this dietary regimen? Or is it silly, that is, having no effect, or dangerous, that is, causing the cancer to react to what is passing through the urinary and colonic tracks?

Today, too, I have a dull ache in my lower right groin.  I have had it before. I comes and goes. My primary doctor thought it was related to the rock climbing I do. I often stretch out into extreme angles at my hips. He thought it was some kind of sports hernia.  On the other hand the CT scan I had last year indicated that there is a mass in my rectal area and my urologist confirmed that it is there—he could feel it. But he wasn’t sure it was a tumor.

So what should I do? How do I react to this mild pain?  The best is to just ignore it. Figure old bodies get pain. It goes away. But when I let in and im kick in, then I can wonder if the pain is a symptom.  I don’t like the kind of worry. I don’t have the answer to the questions. I don’t like leaving what could be potentially dangerous (at least so I think, but I have no idea) alone.  Should I do something about that? Talk to someone? I tell Mary, and the doctor when I see him, but that is all.  I hope what I do is right.

I can give another example related to the bleeding. Often a bleeding episode occurs when I have a pressure on my anus. It feels like I need to sit down to take a bm. (I have decided to quit using words like crap or shit. Less aggressive seems better.) Sometimes I do sit and stools, urine and blood emerge.  Sometimes I just stand at the toilet, the urine and blood emerge and the feeling of needing to defecate goes away.  Sometimes I sit and a stool drops and urine but no blood. Today I have had all three experiences. Granted the context I am putting all this in—in and im—how do/should I react to all this? Ignore it? Worry that the tumor is getting bigger? I find this area tedious and it is one of the things I mean when I say that a person has to fight cancer often in not very obvious ways.

The other thing that has happened is that the PSA jumped. Mary and I had several end-of-life discussions. Then things settle down and I jump back from that boundary and deal again with the ordinary vicissitudes of this disease and daily life.  When really do I need to do end-of-life thinking?  Perhaps always or regularly but as often as I visit the oncologist, every couple of months? Or about the same as anyone else who is past 70 and does not know whether the proverbial bus will run you over today.

An answer to a nephew

During the spring of 2015 my PSA rose quickly. By May it was 350. In June I began to take Zytiga and prednisone. In the first three weeks of being on that regimen, the PSA dropped to 89.  Naturally, I hope that decrease continues.  During the spring I wrote to the family and Keenan, one of my nephews, asked me if I could explain things better. What is attached below is my letter to him. I hope you find it helpful.

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April 30, 2015

Dear Keenan,

As a result of your question to me, I went to see a second-opinion oncologist today. It was a pretty neat experience. When I tried to answer your question of a couple of weeks back, I realized I didn’t know a whole lot about the biology of prostate cancer.  That lack had been deliberate on my part because when I first got cancer I went on line and read a lot of stuff that basically just scared me. So I decided to just trust my urologist which I did for all these years.  But as the PSA went up and the tumor appeared in my hip bone, I got more interested in what this stuff meant. Your inquiry put me over the top.

I did some reading and discovered that I am in a place where it is not exactly clear what is happening to me and what the sequence of treatment might be. Thus, off to the second-opinion guy.

I had two questions: What is the biology of prostate cancer? And Is my current treatment correct, or at least acceptable?  The answer to the second question is that yes it is acceptable.  Here is the deal. When I go to the oncologist, the first question always is Do you have any pain?  I say ‘no’ and then we talk about other things. So today I asked, What if I say ‘yes’? If I say yes, then I am what is called ‘symptomatic’, that is, my tumor is causing problems and they need to do something about it. There are a range of methods to deal with that eventuality. I won’t go into them here. Basically they are various levels of radiation or chemotherapy.  Because I say no, I am ‘asymptomatic’ which means that whatever evil the tumor will do has not started yet, which is good. I workout, feel positive, rock climb, run a photo club. I do what I want to do and am not restricted by my physical condition. That is good. As a result the prescribed treatment is more pills of the ‘miracle’ variety. That means that they can slow down the cancer (though at this point there is no cure for what I have).

Well, that discussion led into How does all this work in my body?  First, why did my (or does your) prostate produce PSA? The answer is they don’t know. PSA is an antigen. Basically antigens are bad to have in your body. You can look up a definition to know more. When antigens invade your body, some mechanism in your body produces antibodies, which are good. Apparently the two things maintain some kind of equilibrium in a healthy male body (a ‘good’ PSA for men is 4 or below). Cancer happens when the PSA jumps ahead of the antibodies (I think).

What produces PSA? First, your prostate. But if you have cancer and they take the prostate out, then some residual of prostate cancer cells produce it.  Here is the deal, according to my oncologist this morning—PSA only tells how fast something, probably a tumor, is producing PSA.  It does not tell how bad or extensive the cancer is. So, the oncologist pointed out, I could be in a room with my PSA of 50 and someone else could be there with a PSA of 10 but he could have more extensive cancer than I do. As a result of that fact, not just PSA but whether you are or are not symptomatic, indicates what a doctor should do. I am not symptomatic at this point, so there is less urgency than if I were.

All that of course leads to Well, how long have I got? Do I need a bucket list?  His answer was I don’t know how long you have. You could have 6 months and you could have 20 years.  The thing is that prostate cancer is very individualized. It is, apparently, not predictable other than in a very general way. That means that one day somewhere in the future I will wake up with the pain that tells me and the oncologist that tougher treatments have to be used. Then I might get a bucket list date.

What I take from this discussion is that I live with a “certain uncertainty.” By that I mean that everyone lives with uncertainty about death. Anyone of us could, as the old saying goes, get hit by a bus tomorrow (harder in Menomonie than in a big city, but even we have bus routes). That is uncertainty. Certain uncertainty is that probably the cancer will eventually kick in with the pain and then I will have a different issue to deal with.

I am left with Plan and Do. So I would like to go back to Germany (I have studied German since July and can read and speak baby sentences), go to Africa where Mary has always wanted to go, delight in the trip down the River which your dad has wanted to do for years, and your Uncle Mike can’t wait to get going on, plan my 50th college reunion (I was the president of my class, and the valedictorian), plan our 50th wedding anniversary.  You get the idea.

And so, to you, Thank you. Your question got me off my ass, got me reading, got me to formulate questions (at midnight, one dark night, writing feverishly into a little note book I keep by my bedside), and got me to act so that I had the appointment I had today.  As I have said, I count on you.  And you came through.

If you have more questions, ask them. You have a great track record.  In the meantime here is the hug I tell everyone to give those that you love. I love you, and I hope I see you and yours before all too long.

Dan

The daily fight against cancer--little things, not big ones

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May 11, 2015

I have been working on a longer document dealing with indecision and imprecision. By indecision I mean the inability to make decisions as a result of worry about the consequences of rising PSA. By imprecision I mean my incomplete, even embarrassing lack of information on the physical working of prostate cancer.

I will post those entries later when I have finished them and am not publishing basically a rough draft.

For now I want to comment on the daily task of fighting cancer. For me the issues are not pain, or “why me?” syndrome, or fear of death. The issue is a kind of indifference. It is hard to define this experience. One way to talk about it is to use the phrase ‘Who cares?’  To put it a different way, it is the sense that the day ahead is mostly empty. I don’t feel a sense of commitment to this day or the tasks I might have to do. The opposite feeling can be illustrated with an image: I walk forward eagerly chest out, ready for what the day brings.

The negative feeling is, I suppose, some kind of depressive reaction. It seems to come from nowhere. Nothing particularly sets it off. Just there it is. The other feeling is almost as random.  I have had both all my life, but I felt the latter one more often. Job, family, duties, hobbies, interests, all called me and I responded, chest out, into the complexities required of me. The required tasks, when completed, left me with a sense of well-being. I had it many times after a good class. I have had it rock climbing when I have a good day on the wall, even if I don’t complete a new, more highly rated route.

The days I am talking about find me flat, feeling empty.  That feeling is what has to be dealt with. I don’t have a sure fire method to handle the feeling.  The best I have been able to do is identify it.  That strategy gives me strength. If I can identify it, I can keep it from controlling me. It is not me, it is this thing that happens.  That strategy is part of my advice about dealing with cancer—Look it in the face. See it for what it is.

In some of my posts and emails, I have gone on about keeping up my activities and my goals, and I do keep up. But those writings often have a sense of whistling in the graveyard. I will endure.  Those are fun to write and the general attitude is one that is easy to agree to. There I am on my white horse, combatting the enemy dragon in single handed combat. Those writings tend to occur after a test where my PSA has once again gone up. I want my support team to know that though this cancer has a grim ending, one can’t be cowed.

The feeling I am addressing here, though, is not in that vein. It is the quiet murmuring that burbles up without warning.  It is there.  And it is insidious. So for me, and for you if you are suffering from this cancer, I have to say—this happens. It is hard to deal with. What I know is that it will pass. Keep going forward.