Hi Guys, I was diagnosed 1 year ago today. I wanted to give an update on my journey and hopefully get some pointers along the way.
April 10th, 2016 - Diagnosed after TRUS biopsy, 12 cores, 11 with cancer, Gleason 8 to 10 for all samples.
April 17th, 2016 - Bone scan revealed multiple bone mets, but none apparent in lymph nodes or visceral tissue. Urologist said that he could not operate due to positive margins and he told me that since the cancer was outside the prostate there was no point. He put me straight on a short course of Androcur and said that I would need a Zoladex implant within a few weeks. He told me that prostate cancer ‘feeds’ off testosterone and I needed to have my testosterone levels suppressed to slow the growth. He said his job was done and I should go and see a medical oncologist for chemo and a radiation oncologist for external beam radiation or brachytherapy.
May 1st, 2016 - I consulted with a second Urologist for a second opinion. He confirmed the severity of my diagnosis, but he said that he could remove the prostate but that there were risks. He suggested I see a medical oncologist for chemo and ADT and then, in a few months, hopefully after the tumors had shrunk, he could remove the prostate.
I considered getting an opinion also from a radiation oncologist, but I didn’t end up doing that. At this point, my thinking was that I would like to keep my prostate in tact. Lots of what I read suggested that an RP or RT involved lots of unwanted side-effects, so I decided, I would try to find a treatment solution that allowed my prostate to stay where it is.
At this point, I didn’t know what to think, or do. I started my research into treatment options, supplements to take etc. I put together a list of supplements, that made sense to me.
Thanks to this forum and all the generous contributions of Patrick, Gusgold, Nalakrats, Dan59 and others, I put together my ‘Complementary Protocol’ the main aspects of which are Pommegranate extract, Cayenne pepper, Vitamin D, Vitamin C, Turke Tail Mushroom extract, Lyco-mat-o, Magnesium, Propolis, Circumin, Serrpeptase and Nattokinase. I am not sure if this is the best list I could be using as I cannot find any medical experts in my city (Perth) with even as much knowledge as me about supplements.
I also made radical changes to my diet, giving up: Animal products, Dairy, sugar, processed foods, alcohol (still have some red wine).
In the mind/body/spirit notion, I’ve also started a regular practice of meditation and I have tried to remove as much stress and negativity from my life as possible.
Around May/June I started looking into cryo-therapy as a treatment option. Someone put me on to Dr Gary Onik in Florida. I started reading into his successes and I decided I wanted to explore further. Much of the material I read about Dr Onik, seemed to suggest he had about a 85 - 90% success rate with both low risk and high risk prostate cancer. One of the papers I read, showed a cohort of 70 men with PCa, who underwent cryo-therapy (with bonus immunotherapy thrown in) and I recall that after 5 years, 10% had died, but they had not died from PCa, the rest were basically still alive, which implied 100% of them survived. I think the 10 year figures were 89% still alive in the ‘High Risk’ group.
In July, I made the decision to go to Florida for treatment, so in August of 2016, my wife and I flew the 32 hours to Fort Lauderdale from Perth and I had my first round of cryo-ablation.
The therapy itself, was pretty easy for me, the patient. A 3D-mapping biopsy, followed by the cryo treatment 3 days later and I was done. The immunotherapy part is the injection of Leukine into the tumors during the procedure.
Doctors have noticed for years that cryoablation (freezing argon gas to -195 degrees C) kills healthy cells and cancer cells, but the surrounding tissues are not damaged. Doctors realised that cryo given to hospice patients for palliation, actually stimulated an immune system response, which began to clear up the mets in the patients. This reaction was known to be fairly weak, so Dr Onik added Leukine to improve the reaction.
After the procedure was finished, I had minor temporary inability to pass urine, but this was fixed with a single use catheter and passed within 2 days. After two more days, I had no symptoms at all.
We returned to Perth and I had to inject Leukine into my belly or legs each day for 30 days. Leukine boosts your white blood cell count, so each time I got a blood test, my local doctor told me I had an infection, but really it was just a spike in my WBC count.
Over the next 2 months, Dr Onik was encouraging me to come back for a second treatment, so in mid-November, we did the 32 hour flight back to Fort Lauderdale again.
The second treatment went through without a hitch. Dr Onik has observed that guys with significant disease, can take 2 or even 3 treatments to get a good result, while guys with a low burden of disease can often get by with one round.
This time around, Dr Onik had a team of guys at the ready to undertake Leukapheresis (separating the white blood cells out from the blood by spinning) and then he mixed my tumor’s tissue with the white blood cells and added Leukine before injecting back into my tumors in the prostate. The idea here is that you may get a better reaction this way.
Anyway, fast forward 1 month. We’re back home in Perth and I arrange some body scans to see where my condition is at.
Much to my disappointment, I haven’t had a good response. A good response would be for all bony metastasis to clear up, but for me this didn’t happen. I had a series of scans and what I can say is that 9 months after my initial diagnosis, my condition had not progressed. I was feeling some body aches and pains and I was concerned that things had progressed, but when I read the radiologists reports, it was clear that I had no new mets and the ones I had, were not as intense as they were 9 months ago.
Was it the single Zoladex implant I had in May 2016, that had stopped my mets getting worse, or was it the cryo-immunotherapy? Did I get a partial response? Did I get any sort of change in me that might give me a long-term benefit - who knows.
Despite the fact that I do not appear to have had a good reaction, I think Dr Onik is doing some great work. When I was last in his clinic, there was another Aussie guy in the bed next to me. He was aged 64 and like me, he was there having his second treatment after having his first in August. We exchanged numbers and I gave him a call after I’d had my body scans done. My condition had not improved much, if any, his condition had fully improved to the point they could not find any evidence of disease in his body. This is a guy who had metastatic PCa in the bones, 5 months later, no cancer.
After the realisation that cryo had not given me the results I had hoped for, I consulted with a medical oncologist and a radiation oncologist again in February.
The radiation oncologist told me there was no role for radiation for me at this time (I was a bit surprised by that). The medical oncologist said my future included chemotherapy, denosumab (for bone integrity) and continuation of Zoladex, as I still seem to be responsive.
So far, I’ve had two rounds of Docetaxel chemotherapy and I have 4 left, which should be finished by June. After that who knows. I have reached out to Dr Steve Tucker in Singapore, who used to work with Dr Leibowitz and his team at Compassionate Oncology in LA. I feel that these guys understand hormone treatment better than your average oncologist and they seem to get much better long-term results, though it would be nice if they published their results as it is all hearsay until then.
I’m also looking into some Dendritic Cell treatments in India. This is where they add your own tumor cells to your white blood cells, separated by Leukapheresis and then they inject the vaccine back into you on day 8, then every 2 weeks. I know of one guy who’s going through it and I have heard positive noises, though I am yet to see any real evidence.
The physical aspects of this disease have been manageable but the mental burden can be a bit much at times. I have two daughters aged 9 and 10 and I desperately want to be around for them growing up. I will do whatever it takes.
Thanks for listening guys.