Final Update?

In my January entry 2024 I promised to provide the following information on a book that I intended to write:

1.Title

A Tumultuos Journey  

One Man's Battle To Beat Prostate Cancer

2.Cost

$24.24

3.Where it can be purchased

Amazon

Feedback is welcome

Best wishes to you and yours

Update II

 After my recent fall in which I broke my left hip and femur I convinced myself it was only a matter of time before I return to my usual day to day activities including playing Pickleball three days a week. Regrettably it is all too apparent this will not happen. My age (86) and fall have taken their toll. Accordingly it is time to think in terms of what I will and won't do for the remainder of my life.

Will do: (1) Stay home with as many caretakers that I need and can afford to keep me upright, comfortable and able to take nourishment(2)Use a drug e.g. marijuana to minimize pain and discomfort whether it be physical or mental (3) publish a book documenting my trials and tribulations. I will provide the title, cost, and where this book can be purchased in this forum when this data is available.

Won't do: take medications to extend my life. I know such drugs exist (one of my Cancer buddies is currently using such drugs as prescribed by his doctor).

Best wishes to you and yours.

Brief Update

 This entry will almost certainly be the last prior to the publication of my book which describes my ongoing battle with prostate cancer. Roughly two thirds of the book consists of a verbatim rendering of this journal. Consequently if you have followed my experience on line there will be little if any need for  you to purchase a copy of the book tentatively titled "One Man's Ongoing Experience With Prostate Cancer."

Stay tuned. Best Wishes.

Don O.

A Non Too Eloquent Treatment Dilemma

 To some degree the subject matter of this entry is speculative. Its inclusion seems warranted based on its implications for my fellow PCa Warriors. 

My primary anti-cancer agent Xtandi  appears to have my PCa well under control with a consistent PSA of .03 for the past several years. The dosage as prescribed by Dr. Myers is  four 140 mg capsules daily. While this protocol effectively controls the progression of my PCa, I am all but certain (1) it contributes to my chronic dizziness (2) precipitated a bone breaking fall about a year ago (3) currently retards (prevents?) my full recovery.

While I no longer need a wheelchair to navigate, I have not progressed beyond the use of a walker as my primary means of getting from point A to point B.. I do use a cane from time to time in an attempt to expedite the rehabilitation process. On rare occasions I waddle around without a navigational aid.

I have been rehabbing for roughly one year. It is my impression that most others who have had similar falls and broken bones return to independent navigation in a similar time frame. 

My current physician has indicated that had I been his patient from the outset my primary anti-cancer agent would be Lupron. My long time readers know I have been anti-Lupron from the outset. Herein lies the dilemma. Do I alter my protocol in an effort to expedite the recovery process or do I stay the course?

My perspective is: damned if I do and damned if I don't.

Stay tuned. 

A Recent Exchange of Emails Between a Fellow PCa Warrior and Yours Truly

  Don:

I keep up with your blogs.  I hope you are doing well and have completely healed from your injury.

Here is some information you may find interesting regarding UFPTI and proton radiation}

It will be 9 years in August since I had 39 radiation exposures.  My primary care physician decided I needed a colonoscopy.  I went last Thursday.  The physician was UNABLE to perform the exam.  It seems the radiation from the proton beam has caused adhesions in the sigmoid colon (either just past the rectal/sigmoid junction or near the descending colon).  The colonoscope was unable to bend its way through the colon since the radiation has made a section of the colon stiff.  The region cannot flex enough to allow the scope to pass through.  No amount of maneuvering would work to loosen the fold.  The physician could not attempt to force the scope through for fear of puncturing the colon.

I am having a barium enema (with air contrast) on March 8th in order to see if there are any polyps present.  I have had two polyps in the past 20 or so years.  Now, the real issue is just how on earth does a physician get INTO the colon to remove a polyp that shows up on the x-ray?  He certainly cannot enter through the rectum.  It looks like the only way to accomplish this feat is to drill a few holes in my abdomen, inflate the region, and then slice into the colon to allow a scope to snare and remove the polyp.  Of course the colon will have to be stitched, running the risk of a future blockage from scar tissue or suffering through an infection if the sutured area leaks.  

I have NEVER found any literature on this issue.  I know the institute never suggested this was possible.  Have you ever heard of it?

I am now 75.  My thought is this:  If by chance there are no polyps present I am not going to go through a barium enema experience for years.  Even if a polyp is found down the road, it will take 10 years for it to develop into cancer (if that ever occurs - a majority of polyps do not become cancerous).

If there is one or more large polyps found in the upcoming exam, I will have to decide if I want them out.  Keep your fingers crossed that none are found.

Take care. Les

Les

Always good to hear from you. I continue to make progress on my rehab., but never fast enough despite several months of physical therapy and daily home exercises. 

To date I have not heard of the colon problem you are experiencing. You seemed to be doing so well except for a chronic  (non-worrisome?) bleeding problem. I am surprised and concerned about  what you describe. It's your turn to keep me posted.

 Until recently I had been undergoing an annual colonoscopy. My proctologist usually detected a few benign polyps which he removed as a matter of routine. About two years ago he decided no further colonoscopy's would be necessary on the premise that at age 83 in all likelihood I would die of something other than colon cancer. I elected to rely on his judgement rather than seek a second opinion. Prior to this appointment I had begun to experience chronic constipation. Without indicating this was due to age, radiation or a combination thereof, he suggested I would need to control this as best I could with over the counter medications. I wish it were different, but so far so good.

 In retrospect it seems possible that the urologist who diagnosed my PCa knew a little something when he advised me that radiation is the treatment choice that keeps on giving.

 Here's wishing you the best. As indicated I would very much appreciate updates as you proceed.

Regards Don

Hey Don

I completed the barium enema with air contrast on March 8th.  It was a miserable experience.  Think of it as one round of proton radiation with the balloon, but it lasts 35 minutes.  At least for me it was extremely uncomfortable.  The good news is there are not any side effects to the exam, other than waiting for the colon and rectum to return to normal after a few days.

No additional polyps were found in the exam.  No news could be better than that.  I met with the physician assistant on Monday to discuss the findings and a future plan of action.  Since there was one polyp removed during the attempted colonoscopy, the physician and the PA want me back in 5 years for another exam.  The polyp that was removed was benign.  Both recommended another barium enema.  I asked the obvious question:  What happens if a polyp is located in the descending, transverse, ascending, or sigmoid colon that cannot be reached by the colonoscope?  The answer:  They call in a surgeon who bisects the colon and removes the polyp.  I explained to the PA that I will be 81 at the next go round.  I am not inclined to have my colon bisected and surgically repaired to remove a polyp.  Since I have had 2 polyps in 25 years located in the sigmoid/rectum area of the colon, and both were benign, I would prefer to only have a sigmoidoscopy when I am 81.  If there is a polyp present in an unreachable area, it is going to take it 10 to 15 years to be large enough to possibly become cancerous.  Since a majority of polyps are (1) located in the left portion of the colon which includes the sigmoid and rectum and (2) most polyps never become cancerous, I am willing to take my chances.  I can see much more potential harm coming to me by having to sever the colon and reattach it through a surgical procedure.  The PA agreed.  I will have a sigmoidoscopy in 2026.

Assuming you were in the same situation Don, what would you have opted to do?  I want to be sure my thinking has sound logic to it.  

Trust you are doing well.

Les:

"Return in five years" sounds like near perfection to me.

You appear to have analyzed your situation as well or better than any of us could.

Here is my advice, as if you needed it, return to your way of life and continue to make the best of it.

Stay in touch, take care and best wishes.

Don

Thanks Don.  You have sent reassuring words for almost 10 years now.

Take care and stay in touch too.

Les

Developing a Plan to Ease On Out When Push Comes to Shove

 The following is an exchange of emails between yours truly and a fellow PCa Warrior with extensive knowledge about the subject matter. The discussion is edited to minimize unrelated material:

Don  O (me):

We have not made contact for quite some time...cannot help but wonder how you are doing. My PCa remains under control thanks to Dr Myers and Xtandi, but it is only a matter of time. My plan is to ease on out when push comes to shove. This plan includes marijuana which I have never used, and know little if anything about. It looks to me as if there are many, many options. I don't know how much pain and mental anguish I am in store for. I do know marijuana can ease both. I thought my education might possibly begin with you. Can you help me develop a plan of action?

Don M: (fellow PCa Warrior)

Great to hear from you. I'm still on xtandi. It's been about 5 years.  My PSA is about .3  It's been sorta stable rising sometimes and then other times not.  I have zero symptoms, scans are also clear.  However, coincidentally I have my oncology appt today.  If the xtandi fails I'm not sure what my next stop will be.  Regarding cannabis, I'm very familiar with but I personally don't think it's curative.  It's can help with pain relief etc...  Also, if you don't want the psychoactive effect (being high) which is the THC in the cannabis choose the strain which has the CBD cannabinoid.  CBD has no psychoactive effects and the growers have learned to breed out the THC in the plant.  Also, you don't need to smoke cannabis.  There are many forms of delivery like capsules, food, candy, drinks, and tinctures.   Thanks for reaching out again.  Lets keep in contact.

Don O.

I am laying the groundwork for when my PCa meds begin to fail, i,.e., when the pain, suffering and anguish begin to take hold. I am indeed searching for a cannabis product that produces a high, particularly one that I have control over.

You seem opposed to a product that would produce a high. This is my objective as I said to ease the pain and suffering which are sure to arise when Hormone therapy becomes ineffective. I would be interested in your reasoning in this regard. 

  Don M.

No, I’m not opposed to the high effect at all. I assumed maybe you like some other people new to cannabis for medicinal reasons don’t realize there is cannabis available without thc.   You can have both THC  and cbd. In  Michigan you have lots of great options. Please let me know how it works for you

Don O:

I would very much like for the two of us to stay in touch. At the very least let's agree to inform one another when our Xtandi fails and what we intend to do about it.

When I contacted you I was thinking about what I might do to combat the pain and misery that may result when all standard medical interventions begin to fail. Without knowing its technical name psychoactive cannabis is the product I had in mind. Offhand I suspect I will experiment with the tincture option when push comes to shove. Any additional comments you have relative to these thoughts would be most welcome.

Don M:

My oncology appt. went well but my PSA had a little bump.  I'm at .32 but I think I know why.  I've been traveling between Arizona, California lately and I didn't have enough xtandi meds.  Besides that my #'s are good.  Yes, the tinctures with CBD will work well.  Just go to a real medical or recreational cannabis store.  I think you live in Michigan and if I'm correct you have medical and soon to be recreational stores. 

Don O:

I'm not quite ready, but on an experimental basis I thought I would purchase 1 bottle of CBD oil (1000mG/mL) from Buy Weed  Online (for $190).

Would appreciate feedback from you before I proceed.

Don M:

So Michigan is a legal state for medical and recreational marijuana/cannabis.  I'd personally go to one of the stores nearest you and ask them for a CBD in a capsule, oil, or edible format.  You'll find a better quality, tested per state law product to choose from.  Plus the price you mentioned seemed high and I don't think it's what you want.  The legal stores have cannabis products that have all been tested in 3rd party labs for safety and cannabinoid profile.    

Hope this helps but again I would not buy anything online.  You don't know the efficacy of the product.  In a licensed store by the state of Michigan you'll get a quality product.

For the record I am within weeks of age 85 and have been wrestling with PCA for well over ten years.

 

. 

A Personal Update For Those Who May Be Interested

It has been nearly three months since I had a bad fall in my basement* and broke my left hip and forearm. After two operations and a five week stay in a local rehabilitation facility I thought it time for a brief journal update.
Thus far my treatment personnel have not discussed  the reasons underlying my fall. I suspect it may be due to my age(84), my PCa and my PCa medications.
 It is also unknown how complete my recovery might be. My personal goal is to navigate without the
use of a wheelchair,walker or cane. Whether or not I will ever return to (1) daily visits to see my beloved wife who resides in an Assisted Living Facility or (2) tri-weekly Pickle Ball excursions remains to be seen.
*Think in terms of a cement flooring.
Stay tuned.

Dry Mouth Syndrome:Who Woulda Thunk?

A quality of life issue recently snuck up on me despite a few obvious clues that should have raised a red flag. An upper back molar didn't feel quite right. What prompted me to do so I am not quite sure, but I reached into my mouth with thumb and forefinger and gave it a gentle wiggle and tug. Lo and behold I pulled my own tooth. "How could this happen" I asked my dentist. "I see you regularly and submit to innumerable x-rays." His response as I recall was: "X-rays do not detect all flaws and defects."A week or two later during repair work on my self initiated extraction my dentist uttered "dry mouth" more or less as a casual observation. "It can cause bad breath, but this does not appear to be a problem in your case." A few months later during a "deep cleaning" my hygienist detected a sizable cavity in a molar opposite the one recently repaired. I attributed these phenomena to the aging process and unfortunate luck.
Over time I became aware of (other) symptoms of dry mouth. Gradually upon awakening in the morning I noticed my mouth becoming less and less moist to the point that my tongue was beginning to stick to the roof of my mouth. Duh...it is at this point I got the message. Accordingly I Googled "Dry Mouth". Lo and behold one of the primary causes listed is an abundance of medications. The next order of business... who to consult? My primary doctor? My oncologist? My dentist, who had already been given ample opportunity to weigh in? My fellow PCa warriors on the internet? I chose the latter. My outreach effort produced the following informational exchange:
My posting:
I have recently begun to experience dry mouth. Google says a common cause for this malady is medications. There can be little doubt but that I am now and have been on a protocol which contains a large number of anticancer agents and supplements ala Dr. Snuffy Myers.
Anyone else on this site experience dry mouth? If so, what did you do about it?
My outreach produced the following two helpful responses, edited slightly for brevity and relevance:
--"I generally do not have an issue with dry mouth, but my wife does. She recently started using a product called Xylimelts, which is working very well for her. It is commonly available at many drugstores or online."
--"I get a dry mouth particularly at night and find that Xylimelts work longer and better for me than other mouth washes and sprays. One between the cheek and gum at bedtime usually does the job"
For the record I have the following concerns regarding this resolution of my malady:
(1) It seems rather odd to treat a problem of too much medication by adding another medication (six pills per day)
(2) The Xylimelts packaging contains the following qualifying statements:
    (A) This product is not intended to diagnose, treat, cure or prevent any disease
    (B) Product does not produce and may reduce the risk of tooth decay
Nonetheless I have begun taking Xylimelts which appear to be my best alternative. Upcoming dental appointments should provide information on the effectiveness of this product and whether I initiated treatment soon enough.
Stay tuned.

Update as of June 12,2020

After a little experimentation with Xliments, I settled on one tablet between gum and cheek nightly as recommended by the fellow PCa warrior cited above. Later I supplemented this solution with a single room humidifier purchased at a local Walmart's for well under $100.00. A third change involved an increase in my daily water intake by eight ounces or so.

 Thankfully with these changes my dry mouth syndrome is well under control...Thank you very much!

 

Hope Springs Eternal and the Beat Goes On--La de da de de,la de da de da

Recently I became aware of an option wherein newly diagnosed PCa patients as a matter of routine can have their cases reviewed by a Multidisciplinary Review Board (MdRB). This service is provided by a large, well known hospital located here in mid Michigan--one I am familiar with because (1) I  consulted one of their oncologists in my search to replace Dr. "Snuffy" Myers upon his retirement and (2) I underwent radiation at this facility for my gynecomestia.

In my ongoing quest to determine what to do when Xtandi is no longer effective, I thought perhaps such a review would help me to choose among the options I have under consideration and provide me with one or more solutions that have thus far escaped my attention. It also occurred to me that one or more of the MdRB members may be aware of a clinical trial well suited to my PCa dilemma.

I contacted the nurse coordinator of the MdRB to determine if a review of my case could be arranged. Shortly thereafter much to my pleasant surprise she advised me by phone that a multidisciplinary review could be arranged.

A week or so later without further contact I received a phone call from the nurse coordinator who informed me the MdRB had met and determined :

--My best choice when Xtandi fails would be  Lupron

--No clinical trials were currently offered by their facility that suit my diagnosis and PCa circumstances.

While the MdRB review provides valuable feedback for which I am most grateful, I expected a more comprehensive report; I expected and would have appreciated an opportunity to appear before the board to discuss some of the more attractive alternatives I have considered in the recent past. As one example it would have been helpful to hear what the board thought about H D Brachytherapy for me and my circumstances. Had I been given an opportunity to appear before the board I would have advised them of my long term deep-seated aversion to Lupron. I had also hoped one or more board members would be knowledgeable about clinical trials on a much broader scale than only those offered by their facility.

Stay tuned.
*Google the title "The Beat Goes On", a 1967 Billboard Hot 100 Top 10 Hit, and listen to the lyrics by Sonny and Cher.

Another Chapter in a PCA Warrior's Continuing Battle

In my (layman's) judgement Xtandi , the primary anti-cancer agent in my current protocol, has begun to fail. For the past year and a half my PSA has registered a reassuring <.01. My most recent  PSA registered .03. A biannual appointment with my oncologist provided an opportunity to get professional feedback on my research effort and focus the discussion on what to do next. Accordingly in preparation for our appointment I developed  a proposed agenda.  The primary response of my oncologist was as follows: "In my judgement your PSA remains undetectable. There is no clinical difference between .01 and .03."

My proposed agenda* with my oncologist's responses (and/or lack thereof) appears below: 

I. Clinical Studies

Are there any promising clinical studies we should consider?
NO RESPONSE

II. Erleada

This medication was suggested as a possibility at our last appointment. I have two concerns:

--Is this drug likely to work following the failure of a similar drug like Xtandi

--Its potential effect on brain function. Roughly two years ago I had a stroke-like episode while on Trental and Jarrow Torosorb prescribed by Dr. Myers to relieve a urinary problem. The episode consisted of a late sudden onset of dizziness preceded by a gentle thump-like strike to the head. A subsequent brain scan revealed (1) no indication of a stroke and (2) I no longer have the brain of a 40 year old.
NO RESPONSE

III. Brachytherapy
Note:In my proposed agenda I included a research study by Kollmeier with fairly positive outcome statistics. This report appears in an earlier journal entry consequently I chose not to include it here.
FOR THIS ALTERNATIVE YOU NEED TO CONSULT A RADIOLOGIST

 IV. Lupron

Based on research following my initial diagnosis, I have steadfastly avoided this option. For brevity's sake let's just say the reported side effects never appealed to me. In addition my previous physician, Dr. Snuffy Myers, was no fan of Lupron based on his research-related scientific background and his personal experience with this drug.

NO RESPONSE

Just prior to my oncologist appointment I received an email from one of my long-time Cyberspace Buddies, a former judge, which reads in part as follows:

"My oldest son has done a significant amount of studying in the science of herbology.  In fact, he has worked for several years at a place called Mountain Gardens in Western North Carolina.  Les is about as level headed a person as there is on this planet and does not dispense advice lightly.

A person Les  knows in Tallahassee is suffering from prostate and bone cancer.  The gentleman is in his 70's. His PSA two months ago was in the 300+ range.   Les suggested that this gentleman consider taking liquid doses of Reishi mushroom along with a liquid dose of Turkey Tail mushroom.  After two months, his PSA reading has dropped to 30.  He has told Les that he has renewed vigor and energy.  Clearly the mushrooms are doing something to charge the immune system."
In brief, unlike anything I have done in the past, I implemented this homeopathic option six weeks ago. As soon as I can determine the impact of this decision I will provide an update.
Stay tuned. 
* Edited to minimize redundancy and exclude one unrelated agenda item.
Update Sept 1,2019
My PSA has remained stable for the past three months. This pleasant surprise may be due to:
  1. My oncologist was correct
  2. The mushroom extracts are working 
  3. A combination thereof
The reader's guess is as good as mine. I have a strong suspicion which alternative is most accurate, but why spoil the fun;you be the judge.

Unexpected Xtandi Side Effects. Not Suitable Reading for My Children, My Children's Children Nor the Faint of Heart

As my earlier entries will confirm I elected to begin Xtandi only after a fair amount of research, hand-wringing and consternation. At the time I was convinced the most debilitating side effect of Xtandi consisted of tolerable fatigue. I have been on Xtandi a little over one and a half years to date. Until recently the side effects evolved as expected.
Gradually a number of unanticipated side effects have materialized; they are:
--Erectile dysfunction
--Genital shrinkage. My male appendage is roughly half the size it was prior to starting Xtandi
--Hair loss, i. e., arms, armpits, legs and head (thinner and less abundant)
--Major reduction in my heretofore robust libido
I do not particularly relish admitting to these shortcomings* in a public forum, but due to my earlier favorable journal entries, I want all readers to be fully aware of the potential consequences of the Xtandi option.

* Pun intended? You be the judge.

A Non-Too-Pertinent Exchange of E-mails Between Cyberspace Buddies

From time to time a deviation from my standard journal entry seems warranted; the following exchange of e-mails  is one such occasion;see below:

Dear Don:

It is hard to believe that it has been seven years since I contacted you regarding my prostate cancer, and your immediate and caring responses.

I continue to follow your blog to see how you are doing.  Your attention to detail and dissecting of possible treatments regarding a recurrence are extremely helpful.  I have been blessed to not see any rise in my PSA.  It reached its nadir three years ago and sits at a very reassuring .02.  The only side effect I have experienced is rectal bleeding which seems to be subsiding.  I have not had an "episode" in a couple of months.  My health is excellent and I attribute that to regular exercise.  I have never smoked or consumed much alcohol, so I suspect that is paying dividends as I pass my 73rd year.

I am not sure if cancer survivors are more prone to attempting to recapture their youth than others, but I have launched off into a new physical regimen:  Powerlifting.  I became a member of USA Powerlifting in 2016.  Even though it is a competitive sport, in reality you compete against yourself to continue to set personal records.  I needed an activity that would motivate me to keep at it, even when I would much prefer a cup of coffee and a donut in the morning.  Powerlifting filled the bill.  I suspect I will compete in judged competition until I reach the Master V class (80-89 age group).  Since that is seven years away, I have plenty of time to feel sorry for myself in the weightroom.

I had a life experience many years ago that challenged me emotionally.  I good friend of mine who is a clinical psychologist dispensed some sound advice.  He told me it was impossible not to think about the trauma, but I would find it much easier if I would set aside a certain time each day or week to let the emotions flow.  Other than those times, I should strive to put the thoughts to bed and concentrate on living a good life.  Having read your blogs for several years, I have come to the conclusion that you too do just that.  You have handled the adversity with class and dignity.

I trust all is well with your family and you.  You have been such a pleasure to communicate with.

Dear Les:

Great to hear from you! 

It sounds as if you have fully benefited from the modern day miracle of PBRT.

My journal serves as my safety valve. Your psychologist friend would say its cathartic. It gives me considerable pleasure knowing that other PCa warriors struggling with this wretched disease find some of the material I produce helpful. Its a reciprocal blessing. 

I have engaged in a variety of exercise programs over the years including weightlifting, racquetball, tennis and pickle-ball.

These activities have kept me in reasonable shape and provide a pleasant diversion from dealing with PCa.

My wife experienced some very debilitating mental and physical setbacks over the past few years, but we manage as best we can. 

I much appreciate the update and your kind, thoughtful and supportive commentary.

Regards    Don

There is something to be said for long term, long distance cyberspace relationships. 

Stay tuned.

A PCa Warrior's Continuing Battle: Part II

I have been researching options for treating my re-currency for nearly two years. Dr. Myers suggested I look for a cure during our final appointment in October of 2016 prior to his retirement.
Failure to do so, he suggested, would result in a slow agonizing death characterized by a system by system shutdown. A summary of my relevant efforts appears below:

I. Cryotherapy* as practiced by Dr. David Miller, University of Michigan Comprehensive Medical Center
--Treatment to be preceded by three months of Lupron therapy
--Cure rate of 50% as indicated by an initial PSA less than 1.00
--100% erectile dysfunction (the procedure destroys the enabling nerve system)
--5% minor (stress related) incontinence
--1%  chance of fistula requiring surgery
 The outcome data is not particularly attractive to my way of thinking and I have been advised by one of my trusted advisers to avoid this option.
*Cited in an earlier journal entry; repeated here for continuity
II. Pencil Beam Radiation by Dr. Rossi at Scripps Health Center San Diego, California
--Would first require SpaceOar procedure to separate the rectum from the prostate followed by a two week period to allow the swelling to subside
--Four to five weeks of treatment
--Cure rate of 50% with
(A) 10 to 20% chance of fistula requiring surgery
(B) 10 to 20% chance of incontinence
For me and my constant emphasis on quality of life, the cure rate is too low and the complication rate too high. The remote distance and logistics further detract from this option.
III. Chemotherapy
I raised the question of chemotherapy with my current MSU oncologist who responded as follows: "Most men with this diagnosis die of something other than PCa. Further attempts to draw him out on this topic were unsuccessful." He concluded our discussion  by suggesting, "We do encourage second opinions." Accordingly I consulted another oncologist who I first met when searching for a local to replace Dr. Myers. This practitioner advised me only PCa warriors whose cancers have metastasized and whose scans show a minimum of three lesions one of which involves bone tissue qualify for chemotherapy. He also advised me this treatment does not offer a cure, but typically controls disease progression for three to eight years.
For the record the typical protocol and most common side effects appear below:
-- One or more drugs, e. g., Taxotere by injection and Prednizone orally administered six times every twenty-one days
--Hair loss, mouth sores, loss of appetite, nausea (with some vomiting), diarrhea, easy bruising, fatigue and peripheral neuropathy.
For my purposes at this time it seems reasonable to postpone further consideration of this option until push comes to shove.
IV H D Brachytherapy
I reviewed a variety of online studies on H D Brachy. A summary of one such study by Kollmeier is shown below because it is fairly representative of the other studies and outcomes:
--Cohort of 42 patients
--Biochemical relapse free survival at five years 68%
--Genitourinary Grade 1 and 2 complications 38% and 48% respectively
--Gastrointestinal toxicity 18%
--Severe toxicities were minimal
Kollmeier conducted a ten year study of PSA relapse free survival with the following results:
--Low risk 81%
--Intermediate risk 78%
--High risk 62%
I place myself in the high risk category because of my age, treatment history and the following three interpretations of my one and only  biopsy slide: initial lab analysis in 2008 4+3, second reading by UFPTI in 2009 4+3, third reading by Mayo Clinic in 2013 4+4.
Of those listed H D Brachy appears most acceptable to me. Is it preferable to plugging away with various forms of ADP? That my friends is the question of the day. It's a crap shoot, always has been, always will be-- this time with far less favorable odds than when I opted for PBRT at the outset. In any event I intend to let the matter percolate for the time being.
Stay tuned.

A PCa Warrior's Continuing Battle Part I

A recent e-mail to my trusted advisers appears below:
A year ago my Casodex became ineffective. I scrambled to determine what to do next. After much hand-wringing, worry and concern  I settled on Xtandi which has effectively controlled my PSA at < 0.01 since March 11, 2017. 

My goal at this point is to develop a plan of action for the inevitable point in time when Xtandi loses its effectiveness. As one of my trusted advisers I would be grateful for your assistance in this effort. The following modalities occur to me as worthy of serious consideration:

--Pencil beam PBRT as practiced by Dr Carl Rossi at Scripps Proton Radiation Center

--Lupron as recommended by the two Michigan medical oncologists I consulted following Dr Myers retirement

--Chemotherapy as practiced by Dr. Bob Liebowitz at Compassionate Oncology Medical Group or by Dr. Kwon of Mayo Clinic

--Targeted high dose brachytherapy as practiced by Dr. Marissa Kollmeier at the Westchester N. Y. Branch of Sloan Kettering in Manhattan.

A brief summary of my treatment history appears below for your convenience:

2005 to 2008  PSA  rose from 1.39 ( Apr. 8) to 3.97 ( Sept. 4 )

2008 Diagnosed with PCa. Two cores positive, Gleason 4+3

2009 Completed PBRT at UFPTI on March 11.  PSA  dropped to .8. UFPTI reviewed my biopsy slide and agreed with Gleason 4+3 determination

2012  PSA  rose from .8 to 2.59 from May to Oct.; Dr. Kwon of Mayo Clinic  identified a small cancerous lesion in  prostate by Choline Scan. Mayo Clinic reviewed  my biopsy slide and determined my Gleason to be 4+4 

2013  Began Hormone Lite as prescribed by Dr. Charles Myers; primary anti-cancer med. was Casodex.

2015

  I.PSA rose from .077 in Jan. to .18 in Aug. Dr. Myers increased my Casodex  from three times weekly to a daily dosage. PSAs returned to their former lower levels.

  II. Endorectal MRI at VCU; 3x5 mm tumor identified

2016  PSAs ascend from .11 in Apr to .49 in Dec. Follow-up endorectal MRI at VCU; tumor more than doubled in size to 10x7 mm .

2017 After a fair amount of research and consternation Dr. Myers and I agreed to modify my protocol with the major change being a switch from Casodex to Xtandi.  My PSA dropped to < 0.01 in about two months and has remained at this level to date.
 <0 .10="" about="" and="" at="" date.="" has="" in="" level="" months="" p="" remained="" this="" to="" two="">Current age 81*..

Part II will summarize responses from my trusted advisers (et. al.?)

Stay tuned.
*This site will not permit me to enter the needed correction. Sorry!

Thought Provoking Exchange of Emails with a Fellow PCa Warrior

Don:
A large prospective, observational study shows that prostate cancer patients who had a prostate-specific antigen (PSA)-based relapse could delay androgen deprivation therapy (ADT) until symptoms presented, without affecting long-term survival.

The estimated 5-year overall survival among the group of men who had delayed ADT was 87.2% compared with 85.1% for those who had immediate ADT following a PSA-based relapse. Ten-year survival was 71.6% for both groups.
The prostate cancer-specific mortality was also similar for the two groups: the 5-year survival for the immediate and delayed ADT groups was 96% and 93.3%, respectively, and the 10-year survival was 90.2% and 89.4%, respectively. All of the patients were previously treated with radical prostatectomy or radiotherapy.
These results, based on an analysis of 2,022 patients that are part of the national prospective registry CaPSURE (Cancer of the Prostate Strategic Urologic Research Endeavor), were presented by study author Xabier Garcia-De-Albeniz, MD, of the department of epidemiology at Harvard School of Public Health, at a press briefing in advance of the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting, which will take place May 30–June 3 in Chicago.
“The role of starting ADT in these patients is not clear,” said Garcia-De-Albeniz during his presentation at the press briefing. Garcia-De-Albeniz referred to the National Comprehensive Cancer Network guideline, which states that there is “a therapeutic dilemma” regarding the role of ADT. Additionally, the potential magnitude of the benefit, particularly for asymptomatic patients, needs to be understood, according to ASCO guidelines.

Joe:
Very interesting study. Over the years I have subscribed to Dr. Myers thinking on this issue; he set forth his position as described in one of my journal entries awhile back:

"Point Counterpoint

Since releasing my last journal entry, which in retrospect appears a tad panicky,  I discovered in my ever-growing stockpile of prostate cancer materials an article written by Dr Charles (Snuffy) Myers that reduces my concern. In a discussion relating to a rising PSA following  prostetectomy Dr Myers points out some patients will not experience serious health problems until PSA values reach between 1000 and 2000. He goes on to explain that a person with a doubling time of one year and a PSA of 3.96 like myself will not reach the danger zone for about eight years. To think it may be possible to continue my current quality of life without seriously jeopordizing my general health for this period of time is very, very comforting. My gosh, why has none of the experienced clinicians that I have interacted with since my PSA began to rise called this medical data to my attention? Phenomenal! Unbelievable!
With that said let me provide a little counterpoint as did Dr Myers. Just as I recently hedged my bet (refer to my previous journal entry), Dr Myers engages in a little scientific hedging of his own. Immediately following his statement about the absence of serious health problems until one's PSA exceeds the 1000 mark, he goes on to say "Despite this I begin treating my patients as soon as the PSA begins to raise".

He supports this practise by citing a number of studies that suggest by doing so longterm outcomes are improved.

My case manager responded to my UFPTI inquiry as follows (paraphrased):
"Your PSA remains low: "Our advice for you is to stay the course, i. e., continue to watch and wait".
So where does this new infomation leave me? Emotionally I feel less panic stricken. Intellectually I still feel the need to locate a knowledgable prostate cancer specialist to serve as a sounding board and technical advisor. I intend to pursue this goal , perhaps at a more leisurely, less frantic pace.
An observation: The roller coaster ride is no less tumultuous than when I commenced this excursion several years ago. As they tend to  say these days: I can't make this stuff up "

Unfortunately both studies focus solely on survival and  neither address QOL.

In any event these two studies illustrate an extremely troublesome aspect of PCa, that is, not even the acknowledged experts agree with one another. The best that we PCa warriors can do is to research our options to the best of our abilities, place our bets and hope for the best. Its a crapshoot and has been for far too long.

A final thought: science indicates testosterone nourishes PCa. Logic suggests it may be beneficial to reduce or block its production.

Wouldn't It Be Nice; A Whimsical Diversion

 An extremely frustrating aspect of a PCa diagnosis has been the lack of consensus among the recognized experts. Most all practitioners including urologists, radiologists (a diverse group unto themselves), medical oncologists and a variety of surgeons appear to regard us as an ideal candidate for their area of expertise. Too often we PCa warriors rely on the first specialist we encounter or equally worrisome we research our options to the best of our ability and base our decision on woefully incomplete data. Either way it's a crap shoot. For the life of me (said with tongue only partly in cheek), I can think of no other affliction where the treatment choice is so problematic. 

 A couple of months ago the TV program "Sixty Minutes" covered a potential solution to our dilemma. The show featured a cancer center located at the University of North Carolina where a team of experts develop treatment plans for cancer patients who have failed standard therapy using the computerized Watson System of Artificial Intelligence. AI capability enables the team to formulate more effective plans based on all the medical literature published world wide including up-to-date clinical trial data.

Wouldn't it be nice if one institute or another with Watson AI capability focused on prostate cancer? Us PCa warriors can only hope.

To view a transcript of the Sixty Minutes segment; see:   

http://www.cbsnews.com/news/artificial-intelligence-positioned-to-be-a-game-changer/

Back on Track with Hormone Lite/Xtandi

Over the past year my PSA has risen slowly but surely from .11 to .76. As any reader of this journal knows, I searched long and hard for a solution with a high likelihood of success with minimal side effects. Rightly or wrongly throughout my ordeal I have placed a premium on preserving quality of life. To my way of thinking a cure would be most welcome, but the risk involved has inevitably tended to over shadow the desired outcome. Its been a crapshoot from the outset and that has never changed.

At this juncture I am pleased to report that after being on xtandi for only three weeks my PSA has dropped back to .11.The predominant side effect of fatigue has materialized as expected. In my case this means after two hours of tennis doubles three days a week I tend to fall asleep in the evenings while attempting to catch up on my reading or watching a sporting event on TV. Short story abbreviated to the max, I am satisfied with my results thus far. A brief but pertinent Patient Portal exchange with Dr. Myers appears below:

Pt.

 Assuming xtandi proves effective as indicated by my monthly blood draws, how long do you expect this medication to control the progression of my PCa?

Dr. Myers

 IT MIGHT WORK FOR YEARS OR AS SHORT AS 6 MONTHS

 

Stay tuned

Serendipitous Contacts Transform the Treatment Plan

The following exchange of emails is self explanatory:

To Dr.Myers:

"As per your request, I consulted with a specialist at Univ. of Mich. who performs all of the hospital's prostate cryosugeries. He advised me that his outcomes parallel the national norms as outlined below:

--A cure rate of 50% as indicated by a PSA less than 1.0

--100% erectile dysfunction (the procedure destroys the enabling nerve system)

--5% stress related incontinence

--1% fistula

In a subsequent exchange of emails, a patient of yours and a friend of mine, informed me that he has been on xtandi for nine months. He expressed complete satisfaction with his results to date. His only side effect  is fatigue which he counteracts with a daily nap.

At one point you were prepared to put me on xtandi, but decided otherwise based on the fatigue factor. Although xtandi may not offer the prospect of a cure as does cryosurgery my personal preference would be to initiate what you at one time labeled Hormone Lite (Xtandi). Can we reconsider this option?"

From Dr. Myers:

"Yes, I will send a script".

 

I implemented the new protocol on March 11.

Stay tuned.

Approaching the Slippery Slope

 

 I have devoted considerable time and effort attempting to identify a safe and effective means to control or eliminate my recurrent PCa. I outlined the history of this endeavor in my previous journal entry. I have tentatively decided on the following ADT protocol recommended by a medical oncologist I consulted at the University of Michigan : Intermittent three-month-duration Lupron injections to be administered each time my PSA rises to 7.0. My current PSA is .60. His educated guess is it will take two years before the first injection will be needed. In the meantime, as per his recommendation, I will continue on Casodex as prescribed by Dr. Myers.

Up to this point I have avoided Lupron like the veritable plague. I first learned of  ADT researching options  following  my diagnosis in 2008. The known side effects are "off-putting" to say the least. It's a bit difficult to fathom at this point, but Lupron appears to be my best choice. For more perspective in this regard I have included a rough draft of a journal entry that I chose not to use until now: see below:

"ADT with Lupron is a form of medical castration. It is designed to do many of the same things as surgical castration (orchiectomy). It is associated with a range of side effects that many men find to be highly delibitating and emotionally devastating, including loss of libido, loss of sexual function, genital shrinkage, hot flashes, weight gain, loss of bone mass, "Lupron Brain"(difficulty in concentrating, clarity of thought, memory loss, etc.) enlargement of the breasts and other symptoms of gynecomastia, and a long list of less common problems. This is not a form of therapy I would wish on anyone if it could be avoided. ADT on its own is not curative and has never been established to extend the survival of men with advanced prostate cancer. It is a palliative form of care whose primary function is to minimize the risk of bone pain associated with advanced prostate cancer. Many clinicians believe that all too many men with progressive prostate cancer are treated much too early with ADT because it can be used to manage the patient's PSA level. However overly early use of ADT is also associated with risk for early onset of castration-resistant prostate cancer. ADT  has shown to have a survival benefit only when used in combination with external beam radiation therapy for men with locally advanced prostate cancer (and to have a curative impact in some of these patients)."

Stay tuned.

Disease Progression and Treatment Synopsis

2005 to 2008  PSA  rose from 1.39 ( Apr. 8) to 3.97 ( Sept. 4 )

2008 Diagnosed with PCa. Two cores positive, Gleason 4+3

2009 Completed PBRT at UFPTI on March 11  PSA  dropped to .8. UFPTI reviewed my biopsy slide and agreed with Gleason 4+3 determination

2012  PSA  rose from .8 to 2.59 from May to Oct.; Dr. Kwon of Mayo Clinic  identified a small cancerous lesion in  prostate by Choline Scan. Mayo Clinic reviewed  my biopsy slide and determined my Gleason to be 4+4 

2013  Began Hormone Lite as prescribed by Dr. Charles Myers; see below:

  I. Prescription Drugs

    A. Metformin 500 MG 2 daily. Anti-cancer

    B. Avodart .5 MG 3 a week. Anti-cancer

    C. Casodex 50 MG 3 weekly. Anti-cancer

    D. Zocor 10 MG 1 daily. Anti-cancer

    E. Losartan 50 MG 1 daily. Blood pressure.

 II. Supplements

    A. Pomegranate 1 daily 10 MG. Anti-cancer

    B. Vitamin  B12 1000mcg

    C. Vitamin D3 5000 IU 2 daily. Restore deficiency

    D. Super Bio-Curcumin 400 MG 1 daily. Anti-inflammatory

    E. Optmized Resveratol 250 MG 1 daily. Anti-inflammatory

  III.  Mediterranean Diet

2015

  I.PSAs rose from .077 in Jan. to .18 in Aug. Dr. Myers increased my Casodex  from three times weekly to a daily dosage. PSAs returned to their former lower levels.

  II. Endorectal MRI at VCU; 3x5 mm tumor identified

2016  PSAs ascend from .11 in Apr to .49 in Dec. Follow-up endorectal MRI at VCU; tumor more than doubled in size to 10x7 mm .

I have considered several options the past few weeks including Pencil beam PBRT, cyberknife, prostatectomy, brachytherapy, focal beam ablation, cryotherapy , Hi Fu, modified hormone lite, full blown hormone therapy and chemotherapy. The first seven options have been pretty much eliminated each for a different reason. More recently an advisor recommended estrogen therapy which looks promising at least for a temporary period (a year or so?)

Major changes under consideration; too early and too fluid to document.

Stay tuned.