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.