Being diagnosed with prostate cancer is an intimidating experience. There is a reason that with this diagnosis you often hear "You have not been given a death sentence," because typically this is the first thought that comes to mind. A thought not easily dispelled. When confronted with prostate cancer I began to research. The more books I read, seminars I attended and websites I visited, the more discouraged I became. There appeared to be no good options. Each alternative carried with it the risk of miserable side effects. Even at the age of 72 and having had a reasonably full life I was not ready to throw in the towel. Nor did I relish the prospect of wearing a diaper or foregoing sexual intercourse the remainder of my life. When things seemed most bleak I stumbled upon Bob Marckini's ray of hope entitled, "You Can Beat Prostate Cancer..." This discovery set into motion a chain of events that changed everything.

My diagnosis caught me completely unaware. I felt blindsided and bushwhacked. A severe case of sciatica forced me to visit my primary care physician to explore my options for relief. It ended in back surgery, but that's another story. In his evaluation of my back pain my doctor conducted a mini-physical which included a blood workup. In so doing he discovered my PSA more than doubled from 1.39 to 3.49 since my last analysis three years previous.

My PSA continued to rise over the next few months. A biopsy revealed two of twelve cores were cancerous with a third thought to be borderline/suspect. My Gleason score was 7 (4+3). The discussion with my urologist developed along the following lines:

"Your cancer is only moderately aggressive, and I can almost guarantee you, it has not metastasized. I recommend robotic surgery. Unlike most other treatment modalities, adverse side effects show up immediately and most are reversible." "What kind of side effects can I expect," I wanted to know. "Roughly 50% of radical prostatectomy patients become impotent," he said. "Nearly all such patients experience a degree of incontinence, but typically this condition is temporary. Longer term incontinence can be ameliorated in a variety of ways." "What about impotence," I wondered, "can this be corrected with medication?" "In most cases, no" he responded. Changing the direction of our conversation, my urologist offered the following option, "If you prefer I can implant your prostate with radioactive seeds. Seeds are easy," he added. "Whichever option you choose we can get this done in a matter of weeks. How would you like to proceed?" "Before deciding I would like to mull it over for a few days." Before we concluded I asked him what he thought of proton therapy. He shook his head with genuine concern, "once you injure your colon" he replied, "it is extremely difficult to repair"

I continued to research, sought a second and third opinion, wrung my hands, gnashed my teeth and opted for proton therapy at UFPTI. Thus far I have done far better than I could have possibly hoped. There is much more to this story. I have chronicled my experience in an on-line journal I have intentionally crammed my journal with semi-technical material hoping to help others make an informed decision.

I know that proton radiation is not for everyone who has been diagnosed with prostate cancer. On the other hand I want to do everything I can to "spread the word" to those whose cancers are amenable to this form of treatment and who may be unaware of its potential. My solemn wish at this juncture is to help one person as much as Bob Marckini helped me. If you have any questions or comments, please feel free to contact me. My e-mail address appears below.

It has been two years since undergoing proton therapy at UFPTI.

My last several PSAs have hovered near the 0.80 level. I am essentially free of side effects. Although there has been some degradation in my potency; I just turned 75, and it is difficult to separate age-related erosion from treatment-related impact.

In any event I have begun to think I made the right treatment choice for my circumstances.

My PCa history including diagnosis, decision-making process. treatment experience and on-going recovery is fully documented in an online journal

I am three years post treatment. Much has happened since my last update, but everything is decidedly secondary relative to the latest development. My PSA has been gradually rising for a year or so. Most recently it doubled (from 1.27 to 2.59) within a seven month period. UFPTI has ruled out either (1) a bladder infection by way of a urine sample or (2) prostatitis through a two week course of Cipro.

It would appear that I am one of the unlucky few for whom proton therapy has not been wholly effective. I suspect that my days of minimal side effects are seriously limited.

My experience is fully documented in an ongoing journal; see http://protondon.blogspot.com/

By way of Choline Pet-scan at Mayo Clinic, I have been diagnosed with recurrent cancer. The scan detected a 1.1 cm nodule in the upper left quadrant of my prostate gland. No other cancers were evident anywhere else in my body. This diagnosis was confirmed by contrast MRI.

Based on the recommendation of my treating physician at UFPTI I intend to watch, wait, monitor and reevaluate my treatment options if and when my PSA doubles within a twelve month period. UFPTI also recommended a major change in my diet, namely to eat less meat and increase my consumption of fruits and vegetables. I intend to follow UFPTI's advice and counsel.

The details of this experience are fully detailed in my ongoing journal month by agonizing month; see: http://protondon.blogspot.com/

The title of my most recent journal entry is "Protons for Treatment of Recurrent Cancer?" It reads as follows:

Earlier in my ongoing adventure I proposed the following "Clinical Trial of One" to Dr Gud E Nuff:

1. Begin with a shot or two of lupron to starve, weaken and shrink the 1.1 cm cancerous nodule identified by Mayo Clinic
2. Kill what remains with proton radiation at whatever volume it takes as determined by UFPTI
3. Reduce the likelihood of a recurrence by adopting a life long regimen of finasteride.

To date UFPTI has not responded substantively to this proposal. An unexpected turn of events has provided me an opportunity to thoroughly explore this option. Although it may take awhile to play out, and I have no way of predicting the outcome of this effort, this interim report seems warrented. Stay tuned.

Background information and more current updates are available at http://protondon.blogspot.com/

I now know proton therapy is very rarely repeated for treatment of recurrent prostate cancer. Further scans at UFPTI also indicated I am an unsuitable candidate for retreatment with protons. For full details see my ongoing journal

My latest journal entry reads as follows:

"Hormone Therapy (ADP) looms on the horizon. The first of two mainstream oncologists I consulted recommended a modified version of ADP. The second recommended standard ADP on an intermittent basis, but only when my PSA reaches 10 which should occur in a matter of months based on its current velocity and trajectory. This is a fate I wish to avoid for as long as I can or altogether if possible (while maintaining my current quality of life, of course). Accordingly I intend to consult yet another oncologist; one whose counsel and advice may well take me in a different direction. For the time being let's refer to him as oncologist #3.

My next (journal) entry will be devoted to this consultation. Stay tuned, but it may take awhile."

My search for an answer to my recurrent cancer included appointments with three oncologists. Two of the three recommended a form of hormone therapy. The third, a fairly well known recurrent cancer specialist by the name of "Snuffy" Myers said."Not so fast".

Generally speaking Dr Myer's approach is as follows:
(1) Maximize one's health to enable the immune system to counteract cancer
(2) Encourage a healthy diet by eliminating foods that promote cancer and increasing foods known to have anticancer qualities.
(3) Prescribe medications to restrict and/or eliminate the progression of cancer.
In my case Dr Myers proposed the following treatment plan:
I.Prescription Drugs
A. Avodart--interferes with the conversion of testosterone into dihydrotestosterone a hormone known to foster the growth of prostate cancer cells. Dr Myers indicated this drug may cause (1) a 30% reduction in my libido and (2) tenderness of the breast tissue.
B.Losartan--intended to bring my moderately high blood pressure into the normal range
II.Over the Counter Drugs and Supplements
A. Mediterranean Diet--as described in a 306 page handout with the definitive title"The New Prostate Cancer Nutrition Book" and as supplemented by a single page listing of foods to consume and foods to avoid.
B. Vitamin D3--the bloodwork submitted as a prerequisite for my initial appointment showed that I was marginally low on this vitamin which controls the absorption of calcium, phosphate and magnesium. As I understand it this deficiency interferes with the optimal function of my immune system. Accordingly this prescription is a corrective measure.
C.Full Spectum Pomengranate extract--this product has been clinically proven to dramatically reduce the doubling time of PSA in most cases
D. Super Biocurcumin--an anti-inflammatory antioxident that promotes good health
E. Optmized Reveratol--an anti-inflammatory antioxident that promotes good health.

Dr Myers places my chances for a favorable outcme at about ninty per cent. He thought it would take three to six months before we knew one way or the other.

This plan was developed especially for me and my circumstances. It is unlikely to be appropriate for anyone else.

For more detail see http://protondon.blogspot.com/

My most recent journal entry reads as follows:

Oh My Gosh; A Glimmer of Hope

Consistent followers of this journal realize my PSA has steadily increased over a two year period. For the record the results of the past year appear below:

April 2012 2.0; Jul 2012 3.1; October 2012 3.96 ; January 2013 4.7; March 2013 5.9; April 2013 7.2. The last entry in the above table represents a treatment benchmark inasmuch as the blood draw occurred in the same week I implemented Dr. Myers' protocol. After following the plan for thirty days or so on May 27th my PSA came in at 5.25. This represents a change in direction and a reduction of nearly two points. Clearly this is a welcome development. Amen and hallelujah! Oh I know only too well, it is much too early to celebrate. One PSA does not represent a trend. And even if a trend develops there are no guarantees. Even so from a medical standpoint I have had precious little to rejoice about over the past two years. So please understand my inclination to savor the moment.

For complete historical detail see http://protondon.blogspot.com/

My latest journal entry reads as follows: Interim Progress Report

Based on PSA values shown below, it would appear Dr. Myers' protocol has arrested the progression of my recurrent prostate cancer:

A. Prior to beginning treatment:
July 2012 3.1
Oct. 2012 3.96
Jan. 2013 4.7
Mar. 2013 7.3

B. Following treatment:
May 2013 5.25 (30 days into the program)
June 2013 5.26
July 2013 4.90
Aug. 2013 4.73(current)

There can be little doubt that Dr. Myers' treatment plan has extended what remains of my 77 year old slightly battered and moderately tattered quality of life. But for the effectiveness of his plan, I would be in the throes of full blown androgen deprivation therapy. That is the direction in which I was headed. USFC issued a brochure titled "Hormone Therapy for Prostate Cancer--A Patient Guide." This publication lists the following possible side effects for this form of treatment: hot flashes, decreased libido, depression, fatigue, reduced muscle mass, breast enlargement, weight gain, hair loss, mild anemia, mental abnormalities, genital shrinkage, abnormal liver function, cardiovascular disease, diabetes and erectile dysfunction. Fortunately I have experienced none of these adverse side effects to date.

For background information and more detail; see http://protondon.blogspot.com/

After declining for four months on Dr. (Snuffy) Myers' protocol, my PSA returned to its rising trend. On my six month return visit, Dr. Myers added the following two prescriptions to my treatment plan:

1. Bicalutimide (Casodex). This drug is thought to suppress cancer by blocking the effect of male hormones particularly testosterone. The Internet describes numerous side effects for this drug, but Dr. Myers thought my primary risks would be breast tenderness and an increased risk for developing diabetes.

2. Metformin. This drug is a first line treatment for Type II diabetes. It works by suppressing glucose production by the liver. Based on an Internet medical site this drug also "exhibits a strong and consistent antiproliferation action on several cancer cell lines including prostate cancer cells." It causes diarrhea in roughly fifty percent of its users.

For background material and more detail see http://protondon.blogspot.com/

With a PSA of 6.7 and rising, I implemented Dr. Myers' Hormone Lite treatment plan on November 11, 2013. Two weeks later my PSA descended to 1.69. By late December my PSA dropped to .49. Thus far the only unambiguous side effect is sore-to-the-touch nipples. Their tenderness is certainly tolerable and more of a pesky distraction than anything else. Please be assured, however, I intend to closely monitor my general well-being for further developments.

With an eye on my future prospects, I used the Patient Portal to email Dr. Myers a couple of questions. His response and my reaction are contained in my on-going journal; see: http://protondon.blogspot.com/

My latest journal reads in part as follows:

A Modern Day Medical Miracle Begins to Look Possible

The favorable trend accelerates. In addition to low and stable PSAs my endorectal MRI (about which I was very concerned) turned out far better than expected. The 1.1 cancerous lesion detected by Choline Scan at Mayo Clinic two years ago shrunk 60 to 70 per cent as calculated by Dr. Myers. "If the tumor continues to respond in this manner," Dr. Myers opined, " it may be undetectable by your next appointment scheduled for October 28, 2015. Should this occur we will be able to remove Casodex from your protocol." For the record Casodex is the only anti-cancer medication on my treatment plan with noticeable adverse side effects.

Dr Myers seemed genuinely pleased with these results. Truth be known, however, I am uncertain whether he was enthused because of the dramatic improvement in my health and general well-being or self-satisfied with his own modern day medical wizardry. An elegant moment none-the-less shared by two elderly Pca warriors, albeit in all likelihood, from slightly different perspectives.

For more detail see http://protondon.blogspot.com/

My latest journal entry titled "Continued Effectiveness of Hormone Lite Called Into Question" reads as follows:

The following exchange of emails lays the groundwork for future personal "adventures" and new journal entries:

A. Recent Patient Portal Email to Dr. Myers

Over the past several months I have kept my Patient Portal inquiries to an absolute minimum. I intend to continue to do so. Currently, however, I feel compelled to call the following trends in my PSAs to your attention.

Over the past nine months my PSAs more than doubled, I. e., from .077 in December 2014 to my current (August) reading of .18. This rise in PSAs is preceded by a drop from .365 in March of 2014 to .096 in November of 2014. Is this reversal of trends cause for concern in your professional judgment?

B. Dr. Myers Response

WE DISCUSSED EXTENSIVELY THE OPTIONS VIA THIS PORTAL AND YOU WERE UNCOMFORTABLE WITH PROCEEDING. WE AGREED WE WOULD REVIEW THEM AT YOUR CLINIC VISIT AND MAKE A FINAL DECISION.

C. My Response to Dr. Myers

I am a major fan of the Patient Portal. It offers patients an opportunity to consult with you directly as issues arise. I have used this option often and much appreciate the prompt professional assistance provided by you and various members of your staff.. I am equally appreciative of how effective Hormone Lite has been for me over the past two years solely due to your medical care and expertise. It is doubtful that I could have fared any better under the care of any other clinician anywhere.

If we have reached a point that my current protocol needs to be modified or replaced, I am prepared to discuss my options in any forum you deem appropriate. Our next regularly scheduled appointment is set for 11:30 A.M. on October 28,2015

D. Addendum

Dr. Myers responded to the above heartfelt statement with a more welcome, more compassionate message as shown below:
"I think we should move to daily bicalutimide. If the PSA does not respond, then in October we can adjust. I sent the script to your pharmacy."
This change represents an increase from three 50 MG tablets weekly to a daily dosage.

For context and complete background material see: http://protondon.blogspot.com/

My latest journal entry entitled "Continued Effectiveness of Hormone Lite Called Into Question: Round II" reads as follows:

In response to a rapidly rising PSA, Dr. Myers tweaked my protocol on August 14, 2015 -- see prior entry. I am pleased to report my PSA has dropped dramatically to .13, i. e., within .01 of the level that it began its alarming upward trend. Alleluia! The making of a modern day medical miracle appears to be back on track!

For complete background material see http://protondon.blogspot.com/

Over the past few months my PSA has risen incrementally as shown below:

April .11
May .18
June .24
July .29
Aug. .38
Sept. .38
Oct. .39

In response to these numbers Dr. Myers and I discussed several options via the Patient Portal including radiation, surgery, full blown hormonal therapy (i.e., complete suppression of testosterone along with its concomitant adverse side effects) and modification of Hormone Lite by substituting Xtandi for Casodex. We agreed on the latter, but decided to postpone action to monitor my PSAs a while longer.

I pondered this discussion over the next few days and returned to the Patient Portal to raise a few related concerns. I advised Dr. Myers it would give me peace of mind if I knew whether he had guidelines in mind as to when action may be indicated. More specifically I posed the following questions: (1) Will we wait until my PSA reaches a certain level? (2) If so what might that number be? (3) Is the speed of ascension a determinate? As was his prerogative Dr. Myers chose not to respond. Rather than press him for answers via the internet, I elected to revisit these concerns at our upcoming annual appointment which occurred a few weeks later on October 26.

The planned informational exchange did not occur. Au contraire! I got blindsided and bushwhacked. The meeting began as usual. Initially a medical technician conducted a few routine tests, e. g., blood pressure, weight, temperature etc. Dr. Myers' physician's assistant continued with a few routine preliminaries. Out of the blue she dropped the following bombshell: "It would appear the casodex has ceased to control the progression of your PCa. She continued the onslaught with the following barrage: "You might wish to consider Cyberknife intervention. There is a physician in California who has demonstrated considerable success with this technique." Her frontal attacks were subsequently supported by Dr. Myers who added the option of PBRT. While xtandi and full blown hormone therapy should remain in the mix, Dr. Myers wanted me to understand, both of these options harbored the risk of castration resistance resulting in a painfully slow, agonizing death. In any event before deciding on a course of action Dr. Myers and his PA agreed a follow up endorectal MRI was an essential prerequisite. Dr. Myers urged me to have this procedure performed by VCU in Richmond Virginia since it was this clinic who provided the "benchmark" examination two years ago.

So there you have it. The tumultuousjourney is back on track with a vengeance. The endorectal MRI is scheduled for November 12th at VCU. Stay tuned.

P.S. - I would very much appreciate hearing from anyone out there who knows anything about the treatment of recurrent cancer with either Cyberknife or PBRT. I can be contacted at: donandmar@yahoo.com

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(see http://protondon.blogspot.com/). 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

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. It was anything but easy, but I settled on Xtandi which has effectively controlled my PSA at >0.01 since March 11, 2018.

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 Kollmeir at the Westchester N. Y. Branch of Sloan Kettering in Manhattan.

For more detail see http://protondon.blogspot.com/

My previous YANA entry focuses on my research effort to determine a course of action when Xtandi fails.

Several of my ongoing, online blog entries are devoted to this topic; see: http://protondon.blogspot.com/

If you decide to take a look you will see my effort has been disappointing thus far.

My latest journal entry is titled:"A Personal Update For Those Who May Be Interested"; it appears below as an update:

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 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.

To view my entire journal, please see: http://protondon.blogspot.com/

A Non Too Eloquent Treatment Dilemma

My latest journal entry reads in part as follows:

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.

See http://protondon.blogspot.com/

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

I have remained on Xtandi which has kept my PSA under control at a steady .03.

Whether it's the medication I'm on or old age or most likely a combination thereof, I had a bad fall and broke my left femur and left leg a little over two years ago. I currently navigate with a walker here in my home or with a cane when I'm out and about.

After my fall I expected to make a full recovery to the point that I could return to playing pickle ball several days a week, but unfortunately that has not happened.

Its been over two years since my fall. I have adjusted to using a walker in my home and a cane when I'm out and about.

I'm in the final phase of publishing a book titled:

A Tumultous Journey

One Man's Battle to Beat Prostate Cancer

Donald's e-mail address is: donandmar AT yahoo.com (replace "AT" with "@")