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.