Met with my ONCO today - WE HAVE A PLAN

So I just back from my latest meeting with my Oncologist.

Just a little recap may be in order here for those that have not followed me from the beginning.

I had surgery in September 2009 after diagnosis of Gleason 7, with 4 cores out of 12. I never attained a zero PSA and in December of 2009 I began Radiation Therapy (70Gy) over 35 treatments. Only saw a continued rise in PSA afterward and in May 2010, an F18 Sodium Fluoride PET Scan found a potential met in my left hip. In August 2010, the met was radiated.

Successive PSA tests have followed a rise to its present level of 9.0, as of October 4, 2011.

I just completed a diagnostic clinical trial at the National Institute of Health, in DC, in September 2011, where I underwent 2 F18 PET scans, coupled with whole body CT. No potential METs or abnormalities were found.

I have followed my cancer and changes probably much more closely than most of you. My PSA tests for the last two years have been about every 1-2 months. Since May 2010, I have had 3 F18 PET/CT Scans, 1 TC99 Nuclear Bone Scan and 2 MRIs.

With all of this info in hand my Onco and I talked about “What’s Next”. He asked when I was going for the next PET scan at NIH, as part of the clinical trial, and I told him anytime between 4 and 8 months from the last scan. He said I should schedule the next one in February 2012 and he would see me again in March 2012. At this point he does not suggest that I start HT. Yes, I know I have a growing PSA, but there is no evidence whatsoever that it is creating or causing me any issues. He is also of the opinion that has been expressed by other PCa specialists, that once I start HT, the clock starts running. That clock being the one where you are on and off and eventually become refractory.

I may be the maverick here, but I am going to follow this plan. We of course talked about the fact that if I noticed any changes, new pains, etc., I would call him right away and we would investigate.

I am also going to refrain from ordering my own PSA tests for the next 5 months and just let it go. I have never experienced PSA anxiety and only ordered the tests because I wanted to closely monitor and gather data about MY PCa. Now it is time for me to take a break and follow his lead.

So for the next 5 months, at least, I just don’t have PCa and I am not going to spend any undo amount of time giving energy to it. I have enough to do with Lynn starting her new clinical trial and that is where I am going to spend my energies.

I know that this plan is totally outside the box from conventional practice, but I can’t find a real flaw in it. This is not a plan I recommend for anyone other than myself. It is just me and my own brand of PCa and how I am going to deal with it.

I will most likely be taking a break from HW. There are many of you that I am close to and we trade emails and phone calls weekly. We will, I hope, continue with that. We are friends on the truest level and friends just stay in touch, that’s what we do. And, I have already made plans to attend GFMPH, Baton Rouge, April 2012.

Without doubt I will pop in and lurk once in a while, but it just won’t be daily.

I wish each and every one of you the most absolute success in dealing with your own battles. Lynn and I both send our blessings to you and your families.

‘EVERY DAY IS A BONUS”, enjoy them all to the max. Take a break from PCa as often as you can and LIVE LIFE.

We love you guys,

Sonny and Lynn

Thanks Mike. Saw your plans for your upcoming trip and it sounds fantastic. Sure hope you guys have a great time.

Sonny

Thanks Sonny for providing the information on the scans and the plan forward. Getting first hand feedback on a complicated subject with the ongoing debate on scans, progression and treatment is worth many hours of my spending time in the doctors office. Not to say I have a problem with my urologist or radiation oncologist but combining your real life experience with others here serves me a lot better than getting quoted studies.

We wish you the best and enjoy your time away.

Take care,
Jake

Sonny, I like your plan and approach. I like how your oncologist is viewing you as a total patient, not just a number on a piece of paper.

I for one, don't think it's outside the box. It's only outside the box to those that are convinced that one should hit it with everything at once, i.e. jumping into HT with a very low recurrance number.

So far, my oncologist and yours are working on the same line of thinking. Mine doesn't believe there is any magic number in the sand to start, if ever, HT. He said even if it hits 15 or 20, if there are no visible problems effecting one's health at that point, then still don't pull the trigger.

He feels that many men jump the gun, not only on starting SRT, but HT in particular. Like your doctor, he uses the clock ananlogy as well, that once you trigger the clock, the meter is running. My dr. feels its better to save that non-curative tool until its really needed.

People have to face the facts. its not written in stone somewhere, that HT must be started early to be effective. The jury is out on that, and leading experts on both sides can justify their position from studies.

In any event, I like doctors that are really treating the patient, not some standard protoacal, or based on some study.

I wish you the best. With all the special tests you have done, some of which I was considering as well, they still didn't tell you or your doctor where the cancer is. Obviously it is there, and its growing. When it manifests itself at some point in time, hopefullly it can still be treated with the tools available now, or might be there in the future.

Keep on keeping on, like you do. You do a great job on that front.

David in SC

Once again, I thank all of you for your kind words and wishes.

I should also add that at no time in my discussion with my Onco did I portray any hesitancy with starting HT. I had decided that when he came into the room I would really just listen, answer his questions and was prepared to move forward with any recommendations he would make.

What his recommendation told me was that the had not changed philosophies sine our last meeting in May. At that time he told me that he was not bound by starting HT based on a particular number. But, he had also told me that if we got into the realm of a doubling time of 3 months, there would not be much choice. At present, using PSA tests from the last 12 months, as suggested by MSK in their calculators, my doubling time is about 7 months.

Thanks again for all of the support I continue to receive from each of you and HW,

Sonny

Hey Sonny,

We talked about this a little bit at GFMPH and I'm with you on this. I think you're making a good choice for yourself. Keeping tabs on the cancer is important, but keeping your psyche and your stress level in check is important too.

It was great meeting you in Rochester. I wish you and Lynn all the best, and I hope to see you again in Baton Rouge.

Jonathan

Sonny: I don't know what to say that has not already been said. You already know that both you and Lynn are in our daily prayers. Our friendship is very special and you already know my thoughts before I speak them to you,

Peace to both of you.

Cajun Jeff

Thanks again to all who have posted since my last reply. We really appreciate you well wishes and blessing.

I promise to stay in touch and to update when there is something of note to share.

Michael, we would certainly like to use the RV Beast more, but I am afraid that for the time being it will be used only for taking Lynn on the 60 mile trip for 2 days of chemo infusions.

Sonny

Sonny: You and Lynn are in our hearts. Best of luck to you both.