Update following the latest F18 Scan with an ever rising PSA

Hello to all of my friends at HW. I haven't been posting a lot, but trust that I come here every day just to keep up with all of you. I have been fairly busy just living life.

I had a meeting with my Onco today. We were meeting to go over the results of an F18 Fluoride PET/CT Scan that I had done two weeks ago .

This is the seventh such scan I have had since May 2010. Three have been done at MDA Orlando and 4 were done at the NCI/NIH as part of a 1 year diagnostic clinical trial that ended in October 2012.

The bones are clean and show no difference from the first scan (May 2010), other than some possible arthritis (hey I just turned 65). The soft tissue scans show the same two suspicious, indeterminate spots that showed up in the last scan six months ago. The change is less than 6%. They appear to be located in the general area of some inner lymph nodes. When I asked the doc about radiation or removal he said they were too close to the intestines for radiation and surgery would be pretty involved. At this point we are going to scan again in 6 months and see if there is any further development.

I know that this kind of flies in the face of the norm here at HW. My PSA was 36 when I was last tested in October 2012 ( we have not done one since), but we are treating my cancer and not just a number. I have done all that I can for a cure. I have had surgery and then 7 weeks of radiation just two months later and yet I have always had a rising PSA.

I told my doc that if he had come in and said we need to do something and do it now, I would have dropped my trousers, bent over and waited for the shot. I know that HT is in my future, but at this point we are not dealing with life threatening issues. Everybody becomes refractory at some point, so that first shot just begins the clock.

I really like the QoL that I have right now. I am living the hell out of life. I have no physical issues, even after turning 65. I am building stuff to get ready to host GFMPH Florida in March, working out, fishing, traveling and umpiring softball on a weekly basis. I lead a very physical life and I am probably in better shape today that when I was diagnosed at 60.

So that’s my update and for at least the next six months I am going to continue with getting on with the getting on.

As always “Every Day is A Bonus and I am choking the life out of them”,

Sonny

Sonny,

That's great on the scan(s)....I like your plan of attack.

Question for you...I also get that type of bone scan...what scan do you get done for soft tissue?

Thanks,
Jerry

Thanks for the report. You are a great role model for us guys on this site!

Sonny,

Good report, still like your style.

Going to see if my oncologist will agree to that specific type of scan for me in February, when we were planning a more conventional PET/CT scan like I had last year. I would like to start having the type you have, since there are lots of similarities.

I see my guy on the 20th, and only reason I am going to ask for a PSA, is to have a fresh one in case the VA decides to see me in person, my last one was in April.

Neither me, nor my doctor, wants one anytime soon in regards to my personal situation.

Good luck ahead, my friend, I think you are on the right course of action for your unique situation.

David

Glad to read the news, Sonny. Keep on doing your thang...

Always good to hear from you Sonny and I support you 100% on your choices. Hope to see you in March.

Michael

Folks thank you for the continuing support. I know that my path for dealing with this kinda goes against the grain, but if we have learned anything here, Pca is different for everybody and it is a different animal that is ever changing.

Jerry L, my scan was the F18 Sodium Flouride Scan done on a machine that does both PET and CT. I personally reviewed the pics from the scan with my Onco and could clearly see the bones as well as the organs and soft tissue.

F8 (Ed) I appreciate you compliment about the nerves of a gunslinger, but I have seen your pics and walking atop those huge bridges takes more nerve in my book. I can deal with the cancer, but being on those bridges is not in my makeup.

John T, yes it is a road less traveled, but as you know from our many conversations, I am constantly vigilant, don't have my head in the sand and always open to change of direction if need be.

Tall Allen, thank you for the info about radiating the nodes. Although my Onco said what he did, I am already planning to do further research on this one. I have just gotten off the phone with Dr. Kupelian's office. He was formerly with MDA Orlando and was the doc who mapped my original SRT. He will be calling me back and we will discuss the potential of my flying out there. Thanks again for the info.

Thanks again folks,

Sonny

Nice going, Sonny, I love the report. I hope you can stay this way for a good long while.

Sonny,

A couple of more details that might be useful to you...

I've been intrigued by the "abscopal effect" of radiation. One of the reasons that radiation is extraordinarily effective with PC is that the radiation-destroyed cancer cells are available to present themselves to the immune system. For a limited amount of time after radiation, the charged immune system can seek out and destroy other PC cells that are in systemic circulation.

Because my friend had already been through SRT, I knew that lymph node treatment might be a final chance to take advantage of this abscopal effect, so I discussed with Kupelian how we could amplify that. I found 3 ways in the literature that might augment the abscopal effect and couldn't harm:
1. Pre-treatment with ADT
2. Hypofractionation (e.g. SBRT)
3. Immune boosters

Kupelian referred us to Dr. Glaspy, an oncologist at UCLA, with whom we discussed various immune boosters. After going through my list, we agreed that a 2-week pre-treatment with Leukine might help and was relatively affordable (under $2,000). Ideally, I would like to have used Provenge, but knowing insurance would not cover it, it was prohibitively expensive. Leukine, a synthetic GM-CSF, is part of Provenge.

Under Dr. Scolz's advice, my friend chose to stay on ADT for a year after treatment for "clean-up" purposes.

UCLA is capable of the C-11 Acetate PET to detect lymph node mets. My current preference would be an FACBC PET available in the US at Emory U. in Atlanta.

I was very impressed with Kupelian and his openness to new approaches.

- Allen

Sonny,
I support your decision also. QOL is very important. After working so hard all our lives (I am almost 63), PCa is not going to rule my life either. At this point I am getting undetectable results but with positive margins, that could change at any time. I am not letting that bother me. One PSA at a time! I still have SE of the surgery but they are tolerable and I am not going to subject myself to further surgeries for a little improvement.

Look forward to meeting you and your bride in March.

Bill from Florida

Sonny,

As always it seems that you have things under YOUR control. While you are doing the research on RT for the 2 spots near the lymph nodes check to see if a CyberKnife could be used. With the pinpoint computer guided accuracy of CK maybe the nodes could be hit with out any effect on the intestines. A new CK facility opened last year here in Birmingham and I have read some great things coming from their facility in treating many cancers. I wish it had been open in 20111 when I was diagnosed with PC.

 

Can't wait to park my RV next to your new pool at the Sonny and Sherry Spa and Resort in March.

 

Terry