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.

 

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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.