When I found out that I had Prostate cancer I had a relatively low low PSA (4.6) but had Gleason 9 cancer 100% involved in all six biopsy cores and my Urologist could not look at me while he explained my situation. He did say that he could not operate and had consulted with a world class brachytherapy radiologist at UCSF - but I could not get not see him for over two months so my wife an I set forth on a quest to find an even better world class Doctor - and we were fortunate to find two working together.
After several false starts we found Dr. Robert Nagourney who was working with Dr. Nisar Syed at the Todd Cancer institute at Long Beach Memorial Hospital. Each of these Doctors is absolutely world class and together they are an unbeatable team.
I joined a Phase 2 clinical trial under the direction of Dr. Nagourney which started with aggressive hormone therapy - five months of Casodex, Finasteride and Lupron followed by Chemotherapy and HDR (High Dosage Radiation) Brachytherapy with Hyperthermia - this was then followed by Chemotherapy with Tomo external beam radiation for five weeks.
The results so far have been spectacular - PSA is .02 and all side effects (except libido) are long gone four weeks after treatment was completed
I'm convinced that they have cured me - although only time will actually prove it to the world.
LarryHN
Later:
After my diagnosis I looked into various treatments and quickly found a consensus that the standard of treatment for my aggressive cancer was hormone therapy (ADT) followed by HRD Brachytherapy and then external beam radiation. This was recommended by four radiation oncologists, my urologist and two medical oncologists.
From there I wanted to fine tune the treatment and find the best Doctors - after a great deal of research and appointments (interviews) with three radiation oncologists and two medical oncologists I decided on a phase two trial which included the consensus care using Tomotherapy for the external beam radiation and adding Chemotherapy to the mix. Then it got interesting - one of the radiation oncologists who does not have access to a Tomo IMRT (Intensity Modulated Radiation Therapy) system greatly downplayed the value of Tomo vs his IMRT and a second one actually tried to convince me not to use Tomo but to use his IMRT - in the first case I believe that the Dr truly felt that his methods were very adequate (and they probably are - but I wanted any extra edge that Tomo would give me) but in the second case I believe that he simply wanted my business to help pay for his expensive machine and was not seriously considering my welfare - I found this very upsetting.
Additionally the first medical oncologist I went to was even more aggressive (and in my opinion out of line).
On our (my wife was with me at all appointments - and treatments - her support and insight is invaluable) first visit we really liked MO1 (medical oncologist number 1) - he put us in touch with two great radiation oncologists and we felt good about his involvement.
On our next visit where I was strongly leaning toward the phase two trial (which he would have been involved in for the ADT but not for the chemo or radiation) he got really weird as I discussed the phase two trial. He stated that the Chemo was not an approved treatment and that my insurance would not cover it and suggested that if I went into the trial even my radiation might not be covered. He stated that for us to do the trial might cost us $70,000 or more that the insurance would not cover (we now know for sure that this is not true since we have completed the treatments and they were all covered). He then said "you know what the purpose of a phase 2 trial is don't you? They want to find out if you die."
WOW! Also during the discussion he wrote out a prescription for the ADT drugs and told me to fill it and start and scheduled a visit to administer the Lupron shot. We left and decided that we could never use him for anything after this performance and checked with the Phase 2 oncologist who said that if I had started the ADT I would not have been eligible for the trial since one requirement of the trial is no metastatic disease being found in a Prostascint scan which could not be done after the beginning of ADT.
Bottom line is we had two very nasty doctor experiences where I believe the doctors did not give me good advice but gave me advice to try to get my business without regard to the value of the treatment to me and curing me.
So this makes me more that ever appreciate the value of the Internet and of sites like YANA where you can do independent research and talk to people who do not have an economic interest in your decision. I was - and am still - shocked at the attempt of these doctors to scare me into using them.
Getting ready for second quarterly follow up since completion of treatment - PSA was .02 at end of treatment - .07 at first quarterly follow up and .05 now - side effects from radiation seem minor.
Looking good - met with my initial urologist today for some radiation side effects and he literally expressed amazement that I was still alive - much less apparently cured - he is extremely impressed with what Dr. Nagourney and Dr. Syed have accomplished (as am I) - about three times in different ways he said he was amazed that I was alive - once he actually said that - and he could not believe that almost 18 months after my last hormone therapy treatment that my PSA is essentially undetectable at 0.03.
So I feel very fortunate and happy that I found two of the very best doctors in the world and have had such an outstanding outcome to a very significant disease.
Just went past 5 years after treatment for Gleason 9 prostate cancer - treatment by Dr Nagourney at Rational Therapeutics "cured" my cancer - a cancer that was clearly a death sentence.
Life is good
Larry Nebel
Another year - everything is great - Dr. Nagorney and Dr. Siad saved my life.
Thanks,
Larry
Cured by Dr. Robert. Nagourney - Rational Therapeutics - Long Beach CA
Cured by Dr Nagourney -- http://www.rational-t.com
After about 8 years my PSA went from zero (.02 or so) to 4.5 for two years and then to 43 - with renewed treatments (hormone [Lupron and Zitiga]), cyber Knife for a stop on my T5 spine, chemo and Tomo radiation things look great for another total (in my view) cure and a long life with no effect from that pesty prostate - To me about ten years being virtually cancer free and the excellent outlook of being cancer free after another 7 Tomo radiation I am very happy.
In April 2018 (12 years after my original diagnosis and treatment) my PSA was increasing from 0 to about 2.5 and I was found to have a large (golf ball sized) prostate cancer tumor in my lung and three small tumors on my spine. So again I was on hormone therapy (Lupron and Zitiga). The spinal metastatic tumors were treated using cyber knife and the lung with Tomo XRay therapy. initial follow up indicated complete remission with PSA down to 0. I will have another complete follow this month with a PET scan and complete blood work up. if the results are positive we plan to discontinue the hormone therapy.
I have developed a slight case of COPD which is being treated with an inhaler - I believe this was caused by the radiation. I also had one node of my left lung collapsed and when I get the PET scan I will also have a lung CAT scan to determine its status
bottom line is I feel good and am active although I do occasionally have to pause to catch my breath and I do tire more easily but this does not cause major problems. Last fall after treatment we we took an three week tour of Southeast Asia and we just returned from a two week driving trip in France and are leaving on a month cruise from Vancouver to Tokyo
Basically I am active, strong and healthy almost 12 years after being diagnosed with terminal, untreatable metastatic prostate cancer. This is due to aggressive multi-modal treatment prescribed by an amazing cancer Dr. Side effects have been minor and my life is great. I expect my upcoming set of tests to confirm complete remission again.
After a recurrence two years ago treatments (radiation, hormone [zyriga and lupron] and chemo everything is good with no treatment for over a year. PSA is up a bit and I will have a full work-ip this month. Life is good and Dr Nagourney has given me 14 years and continuing of a great quality of life.
Hormone therapy was working but quit. Imumo did not work and Xtandi also quit working so we were able to get cleared for Pluvicto which has dropped my PSA from 20 to 1 with three treatments (3 to go) so things are looking great. Time will tell.
Larry's e-mail address is: larryhn AT junenye.com (replace "AT" with "@")
