I am a 74 year old retired physician living in California. My cancer was diagnosed in 2002 had surgery in 2003 (Gleason 7 (bad 7), extended outside the capsule. PSA went to 0.02 from 6.6 and it had increased to 0.2 in 14 months after surgery, I was started in ADT and had IMRT (radiation therapy) in 2005. At the end of radiation treatment everything was stopped and the PSA started to increase very rapidly by November 2006 was 0.6 and I started a trial with the vaccine Prostvac in 2007.
The vaccine stopped the cancer for 6 years.
Then in 2014 PSA started to increase slowly initially and then very rapidly reaching 10 in August 2016. At that time Ga68 PSMA PET/CT showed multitude of lymph nodes metastasis in pelvis and abdomen. I was started in ADT,. I decided to go to Munich for treatment with PSMA Lutetium177. After 1 treatment metastasis are gone and now the PSA is 0.09 (still in ADT).
I believe in intervening sooner than later and when having metastatic cancer to look for clinical trials. I am alive because of these trials since my PSADT in 2006 and in 2016 was less than 2 months. PSADT (psa double time) is surrogate for death by prostate cancer if it is 3 month or less.
Raul, glad to see you join. I too am interested in the Ga68 pet scan. As I write this, I am heading to Memorial Hermann in Houston for my second Axumin PET scan. My first done in July showed suspect T5 -T9 spot, but subsequent hi-contrast MRI failed to confirm. This time around my PSA quadrupled from 0.9mto 4.2 and I deferred any Lupron until this scan is done.
Ga68 PSMA scan is very sensitive if the PSA is adequate. Doctors in Germany do the scans when PSA is 0.4 or higher. At UCLA (clinical study , you qualify) when PSA is 0.2 or higher.
My impression for what I read, is that the technique is higly sensitive when PSA is around 1 or higher. If this scan is negative with 4.2 PSA, you "do not have" metastasis if your cancer has PSMA. Around 20 % of the cancers do not express PSMA.
One of the problems of Ga68 scan is that is eliminated by the kidneys and if there is too much activity in the bladder, and there are some lymph nodes close to the bladder they may not be seen. They try to minimize this problem given diuretics (Lasix and Mannitol), so the bladder will be empty.
I believe you should try to get in the UCLA study since this test is much more sensitive than Axumin and the MRI. (gallium 68 at clinicaltrials.gov).
Anything, please let me know. I am in contact with the people doing the study at UCLA since I had a test done with them. I do not know if the study is still running.
You’ve fought a good fight . Inspiring to those of us reading. We all want to be in that good zone. I’m also on a trail. So far so good. Another chapter in APC.
in reply to
Thanks , the fight continues.
Best
Raul
Onward and Upward young man ! Keep eating those blueberries...
Curious how you got to Germany. I tried using Booking Health which provides arrangements and translators. That was a very frustrating experience where my case was not well understood or presented properly. Bonn University Medical turned me down.
I am on plan B but curious how you solved the language barrier.
It does appear I can get the same treatment at the UCLA / Houston Excel clinical trial once i have tried Zytiga.
Hi : I just wrote to the doctors at TUM of Munich Medical Center and we arrange for the treatment.I had to explain my clinical situation, send my medical records and convince them to accept me since at that time they were taking only sicker patients than me.
I also wrote to Heidelberg, Bonn and Ludwig Maximilian University in Munich. Heidelberg rejected me and I was accepted in the other centers. I decided for the TUM Munich because of the ligand they use for the treatment.
I paid for my trip and the treatment. There is not language barrier since everybody speaks English.
I do not know your clinical situation but Zytiga I believe is not a contraindication for this treatment. You will have to have a Ga 68 PSMA PET/CT before applying, probably at UCLA or you can apply anyway knowing that they will have to do this study first which increase the cost about $ 3K.
I am in touch with UCLA and will have a PSMA scan in a few months instead of going to Mayo for a choline scan. Their definition of castration resistant is PSA going up after being on Lupron - even if its intermittent and you are currently not on Lupron. So I pass.
The trial does require that your have tried Zytiga or Xtandi (successful or not) and that your testosterone is less than 50. And of course its not free since there is no drug company sponsor.
I have been on Lupron and will go on Zytiga next month. In theory I could do one month of Zytiga and be qualified. Before that I am having 4 bone lesions ablated with protons.
I am 13 years deal ing with Pc - robotic surgery in 2005, IMRT radiation in 2010, ablations, chemo, hormone suppression and more ablations. My gut feel as was yours is 177 is the most "curative" thing out there and the sooner the better. Dr Kwon at Mayo has seem guys go 20 years then the stuff come back. So the term curative is relative not absolute.
I am delighted to hear about your successful 15+ years journey in battling prostate cancer.
I am Roland and had been diagnosed on 28 October 17 and is currently on Stage 4 with metastasis to numerous lymph nodes, the spines and ribs.
I happen to stumble on this hypothesis Urine&saliva pH 7.2-7.5 Protocol (my discovery).
I am 1/2800 in this forum that is ditching the conventional/orthodox therapies so far as I am happy with my progress (last 2 CT Scan on 9 January 18 and 19 January 18 has reported no further tumour/bone increase.
Most of the people in this forum reckons I am fooling/foolish for proceeding with my hypothesis therapy.
As a matter of fact I have a younger brother ( 5 years my junior). I am now 63 years old.
So my brother is a gastroenterologist and had been practising as a Specialist in colonoscopy for the last 30 years and he has branded me a failure and stubborn as well as arrogant in not taking up his advise to start on conventional treatment.
Now I want to ask you this.
I have 2 ureteric stents inside me. I have haematuria issues but it is getting better about 1 week now.
From 24-30 December 17 I embarked on Vernon Johnston "Dancing with Cancer" protocol where after 5 days I encountered Gross Haematuria so I stopped.
2 weeks ago I learned that Vernon has passed away in June 2014 so he survived for 6 years which is not what you consider long life.
I am currently using high pH value food to get my Critical Control Point Urine pH7.2-7.5 to control/management of my prostate cancer and I am really pleased with the outcomes.
My basic ingredients: lemon water, green tea, grass jelly, Doxycycline, Vitamin C (8- 12 g/day).
High pH fruits like ripe banana, avocado, cucumber, papaya, tomato ect helps in my target pH 7.2-7.5
Recently I search the net and more proofs in regards to green tea just confirmed my hypothesis.
Also Matthias Rath Cellular Solutions where he use green tea to cure all sorts of cancer proves my hypothesis is correct.
Since my cancer journey and with 2 ureteric stents I didn't even have to use a single diaper ( I bought 1 pack of 8 and hasn't had to use any of them. I am game enough to have regular sex and had no issues.
I played golf 4 times a week and with my recent improvements to my health I was acting like normal (I still has haematuria after golf).
I am pain/fatigue free and can eat/feed liberally ( since I discovered Vernon death and not using baking soda as a an alkaline neutraliser I tend not to overdo on eating junk food) Any way I still could count on doxycycline + vitamin c.
Check up on Rath he use lypsine/proline and green tea.
So I am now like normal as I feel I am in control of my prostate cancer as now I can keep checking on my Urine pH to confirm how my daily progress is acting out.
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