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A Fork In the Road on my PCa Journey.

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

Hi Everyone, To Recap, I was diagnosed with PCa in Feb 2014 and had a RP two months later. My PSA at the time of the procedure was 7.4 with a Gleason of 4+3. My side effects from the RP are ED and severe incontinence that I've endured ever since. In Sept of 2014 the PCa came back and I went through two months of EBRT and six months of Firmagon injections. My SE from the Firmagon was Type 2 Diabetes. Throughout 2016, my PSA rose steadily with an alarming doubling rate. By December it was over 6.0 and, with no action or ideas from my Radiation Oncologist, I switched to a Medical Oncologist. After getting new scans that showed mets to my spine and pelvic region, I started a protocol of Lupron Injections, one every three months. When I started with the Medical Oncologist, my PSA was 6.6. After my first Lupron injection and a short course of Casodex, the PSA dropped to 0.01.

Fast forward to today and, after four Lupron injections, nothing has changed. My PSA is still 0.01 and my Oncologist sees no reason to make any changes. I believe that if we stay on this course the Lupron will eventually fail and, since it's not curative, I'll end up going to the next line of defense and on-and-on until I end up at a hospice. Plus, Lupron has it's own SEs that are pretty harsh. Thus, while I've got such a favorable PSA, and still have the Lupron as a fall-back option, I believe this is probably my best opportunity to take the fight to the cancer. I've been very inspired by the posts on this site; particularly the discussions tied to Intermittent ADT. I also watch every webinar related to prostate cancer that's on the internet. A recent presentation sponsored by the Prostate Cancer Foundation featured Doctor Higano of Seattle and Doctor Beer of Oregon, both Oncologists who specialize in PCa, and some of their patients. They've had a lot of success with Cyberknife and see that as a way to either kill the cancer or cause it to go into a long-term remission. Through a remark that one of the patients made, I learned that it's critical to first have the very best scans possible and Doctor Higano sends her patients to the Phoenix Molecular Imaging Center in Arizona for Carbon-11 acetate PET/CT imaging. That center is run by Doctor Fabio Almeida and he has several presentations on You Tube that discusses his work. He has also written several articles on PCa-related imaging and here's a link to his latest:

http://www.ajnmmi.us/files/ajnmmi0041325.pdf

One of the take-aways from this article is that one needs a PSA between 1.0 - 2.0 to provide the best targets for the imaging. It does no good to show up in Phoenix with a PSA of 0.01. Dr. Almeida in one of his You Tube presentations states that the ideal PSA for this is around 1.39.

Thus, the plan that I'm developing is to start intermittent ADT in February of next year, after the current Lupron Injection runs it's course, and allow my PSA to climb to over 1.0. Once that happens, I'll head to Phoenix, get the imaging done, and then find a Doctor to do the CyberKnife procedure. The research I've done concludes that the PSA should climb significantly after the procedure due to inflammation and then settle back down to zero.

My Medical Oncologist thinks I've lost my mind and that we should stay on the current course. He did, at least, agree to refer me to one of my state's (North Carolina) best/only Prostate Cancer Specialists; Doctor Daniel George at Duke University. If anyone has had great success with Cyberknife, please let me know the Doctor's name. I am very much looking forward to next year and seeing how this plays out. Best/Gene Rose

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Gene,

 I know men who have successfully been on Lupron for many years, but now you are interested in self treating instead of listing to the medical oncologist who has brought you PSA to 0.01. If you are unhappy with the results of this treatment, I suggest that you at the very least,  do research to find a another medical oncologist who you will trust for a second opinion.

By the way the Carbon Acetate 11 Pet Scan cost about three thousand.

There are also other PET SCAns such as the 68gallium-PSMA-11. that are on the horizon that may be an improvement over the Acetate

https://pcri.org/insights-blog/2016/11/28/overview-of-positron-emission-tomography-pet-scans

PS. By the way  Mark C Scholz2*, Richard Y Lam2 , Jeffrey Turner who were listed on the study that you presented are located in marina del rey, here in southern ca. This group  of medical onocologists are extremely competent specializing only in prostate cancer///there are only about 30 medical oncologists who only specialize in prostate cancer....they would be a great choice for a second opinion.

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

Hopeful, You made some great points and I'm certainly aware of the out-of-pocket costs for the C-11 PET/CT work-up. I believe the essense of this journey is doing the research, seeking out the best Doctors and treatments, and doing whatever is possible to arrive at the best outcome. The oncologist I have is a very good and decent man but he has about 600 patients; many of whom are in truly desparate circumstances. The odds that he is going to devote anything more than standard of care to me is just about nil.

I've had a string of poor results from my treatment here in North Carolina; ED, Raging Incontinence, Type 2 Diabetes, and after all that cutting and radiating...I've still got cancer. I want to try something that clearly makes sense and offers the possibility of making a significant impact on my particular PCa. Thanks very much for the names of Doctors Scholz, Lam, and Turner. I'll keep everyone posted as I move forward on this. Best/Gene

 

 

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

By experience and from the many reports I find that we survivors all have different cases with similar status but equal treatments. Surely some may benefit of such that what is good for one may not be the best approach to others, even if our doctors believe in its practice. In fact the only certain results we know from the present ways in PCa treatments is that cure is certain if the cancer is contained. In metastases recurrences one can just try to recuperate from a failed initial therapy. Either it tries to treat it or maintain the case under a certain control. Your present oncologist choice invokes the control of the cancer and most probably the quality of life.

Your comments above make sense to me because it deals with possibilities in treatments that may provide better cancer control if not cure. Lupron may be there for any future rescue (efficiency proven in the past 4 shots) in case you need it. Surely a continuous administration of LHRH agonist will lead the cancer to look for other means of getting androgens (survival ship principles) and to refractory. Intermittent approach is viable and you can time it for any additional image test you want to do it.

The above C11 acetate PET is not new and many more are now in trials showing to have better results. While waiting for the PSA increase you can research about the various tests and decide which one gives you more confidence in to follow.

My approach in treating my systemic case is similar to your wishes. I follow the advice of Myers protocol in intermittent ADT administration. This requires on/off periods regulated under the following principles:
- One year in remission levels of less than 0.05 ng/ml.
- Castration levels of less than 20 ng/dL.

The spot radiation you comment above should be done after identifying the location of the metastases with due exams. It should be done considering the volume of Gy administered in previous RT tissues. Bone metastases should be done only one time so that the best image exams must be taken to assure locations.

I like your moves but you need to be sure of results and careful with risks in your quality of life.

Best wishes

VGama

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