For those who may not be aware, on occasion I post some comments on a Facebook page I follow and titled “Journey with Prostate Cancer”.  Recently I commented on how I embrace my cancer, seeing it as a vehicle to exploit my somewhat unique background and knowledge base to expand treatment options for those similarly afflicted.  The question of my treatment and how I am  doing was posed, to which I responded this morning.  I believe much of this is interspersed throughout the blog, this post attempts to condense things while also bringing everyone current on where I am with my disease.

To the question posed on the page ‘Journey with Prostate Cancer’ and to the readers of this blog:

I suppose I should put this in the blog, I think I’ve mentioned it a couple of times in comments on here. For those who have not read the blog, my numbers are as follows: Gleason 5+4, 11 of 12 cores positive on biopsy, PSA peaked at 46+ and velocity was just under 3 months.

In seeking treatment I saw doctors at 3 different clinics, 2 top 5 cancer hospitals, John’s Hopkins being one and the doctor there with whom I maintain a relationship. Visits to the ‘higher ranked’ clinics both took a multi-disciplinary approach – I saw  to medical and radiation oncologists together with a urological surgery specialist.  At the third, a fairly well-regarded hospital in general, but not recognized for its cancer care, I saw one doctor who was more of a generalist, albeit technically he fell into the medical oncologist category.  All concurred IMRT with 2 years of Lupron was the treatment of choice.

Personally, I fought the idea of Lupron, not for its side effects, which vary by person, but because I felt it was contra-indicated based on my understanding of how therapies worked. Lupron basically slows the cancer by the withdrawal of testosterone, but cancer cells are most vulnerable when dividing, anaphase in particular (if you know the 4 stages of meiosis). However, at the time doctors pointed to a study by a guy named Bola whose work suggested a synergy between radiation and androgen deprivation. In my view, when one degrades the graphs into the respective components, the synergy goes away, particularly in high risk patients. The short of it was no one would radiate me without Lupron.

In reviewing the options I chose the center which offered a somewhat novel approach and whose radiation equipment was the most modern, meaning it was capable (according to the Hopkins doctor) of higher, more targeted doses. The novel approach was a 3-pronged, 2 years of Lupron combined with 76 gray of IMRT (just under 2 gray/day for 40 days of radiation) and low dose Taxotere (10 ng/m^2) for 8x. this began in the spring of 2006.  This treatment, which ended in May 2006, took my PSA down to 0.5 and by 9/06 it was <0.1 .

In a discussion with the Hopkins doctor, we introduced the idea of adjuvant Taxotere, at a full dose (70 ng/m^2) and I pursued that in December of 2006 with 4 doses spaced 3 weeks apart. Lupron continued with shots on a quarterly basis with the last dose being December 2007. At this point my PSA fluctuated between <0.1 and 0.1 until September of 2008 when it rose to 0.5. By spring of 2009 my PSA was 19+ and we planned additional treatments.

Typically, once radiated, you are done being radiated since the ‘healthy’ cells have received the maximum dose of radiation and more would kill them.  There is little, if any, research on these cells’ ability to ‘recover’, or reverse the effects of radiation poisoning; the reason doctors will not re-radiate.  In my case the imagery demonstrated lesions both on the margins of the original field and within the original field.  By challenging my doctors, basically giving them some degree of confidence I understood the ramifications, we decided on a plan which included a slight overlap of fields, very unusual.  I say we, because given my understanding of the procedures and disease, the doctors and nuclear medicine people, brought me into planning sessions to view imagery and to offer input on targeting lesions.  This process yielded a treatment plan which included 54 gray of IMRT in combination with 20 ng/m^2 of Taxotere, something else I more or less demanded.

On the 20 ng dose of Taxotere, I actually pushed for 30, but they were in a stepwise process of determining tolerance for the combined therapy and had not yet obtained all the data on the 10 ng dose.  Initially reluctant, I made the case for the higher dose for me since I easily tolerated the 10 ng dose in the past. I believe this insistence and my persuasive argument, gave the doctors the confidence to get approval from the tumor board, a necessary step when invoking any untested therapy.

This round of therapy saw an immediate, but less dramatic decline in PSA – dropping to 15+ during the initial treatments to a low of 7.3 in September 2009.  It may have gotten lower, but I skipped the December measure with expectations I was likely around 5 at that point.  In March of 2010, my PSA was 10+ and in June 16+, the latter being a bit of a downside surprise.  I skipped the September measure but have another scheduled for 12/1/10.  Expectations for the upcoming PSA are 30+/-, with anything under being considered positive and 35 or higher being quite negative.

In reading this you will notice that beyond the initial IMRT, I have not undergone hormone ablation therapy.  From what I’ve learned, on average, PC becomes refractory after about 2 years of hormone ablation and, statistically speaking, once that happens life spans are limited to an average of 18 months.  Given these numbers, combined with a very positive response (low PSA) with Lupron, I see this as one of the last, if not the last, arrows in my quiver.  Additionally, there is little, if any, research on the intermittent use of hormone ablation.  My thesis is that by pursuing an ‘on again, off again’ approach, I will expand the duration of its effectiveness, something the clinicians agree as being possible.

As an outcome of the second round of radiation, I now have interstitial cystitis, an issue with the blader which caused me to bleed and urinate blood coagulates.  At one point my flow all but stopped which required my being catheterized for 10 days in January of this year.  While my bladder has ‘normalized’ (stopped bleeding), it still aches a bit and my flow is substantively reduced.  Additionally, I am unable to fully empty my bladder, perhaps limited to half its volume at most.

I believe, and have been told by those involved in my treatment, that my involvement and knowledge of my disease has empowered doctors to ‘push the envelope’.  At the clinic where I’m treated, and to their knowledge, no one has ever received a second round of radiation as they did with me.  Additionally, the full dose Taxotere following the radiation/Lupron/Taxotere therapy was also novel.  Sadly, while I continue on, some of those similarly diagnosed, at about the same time, have succumbed to the disease.  That I’ve been able to maintain a rather controlled disease progression is testament to the therapies I’ve undergone.  I am hopeful that my experience will translate into greater longevity for others similarly affected and others as well.

Happy reading and happy trails.

As always, feel free to comment or you may email me at