Aged 49, newly diagnosed, - An Update

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.

Paul.

Last edited by

29 Replies

oldestnewest
  • Hallo Paul,

    I can subscribe most of what you wrote: age (not quite the same, sorry), children, time of diagnoses, bone mets (I can add also lymph nodes), changes in diet, meditation and, most of all your final wish. I had Taxotere (6 times) just after the diagnosis (Charteed trial), but maybe it wasn't a good choice because my PSA rising just 6 month after my last Taxotere. And now I have a weapon less. I've written to dr Pfeifer as you suggested me and I'm waiting for their answer.

    I didn't know about cryo-therapy and dr Gary Onik, so I'm going to have a look in.

    It's so strange ... living so far, but having a so close situation (is it be correct? My english is not so good).

    Following you .... best wishes,

    Enzo

  • Enzo, Dr Petrylak showed that you can rechallenge with docetaxol and get a second response

  • I'll have a look at this option; how log time between first treatment and rechalleng?

  • Thanks Dan, interesting, I've seen Docetaxel re-given with other chemo agents, but I didn't know you could re-challenge when it didn't work.

  • I was speaking of people who did 6 cycles got a response and stopped and would get another response when psa started to raise after the chemo vacation, I know I read that in a study by Petrylak in the past , but all I can find is where they combined emcyt with low dose 3 out of 4 week taxol, or q21 docetaxol with carboplatin. In the early days for me I was in the Hormone refractory prostate cancer group With Howard Hansen and many others, May God rest their souls , and many on there would do chemo get a response, take a vacation, maintain with ketoconazole, and go back to chemo and get a response or at minimum keep there cancer in check.

  • Re- Challenging with a drug is usually tried after there has been another drug tried and then failed. Sometimes it works and other times it does not work. When it does work usually its efficacy is for less time than the original efficacy time period.

    Joel

  • Hi Enzo, wow yes, it is uncanny to find another in the same situation. What country do you live in? Your English is very good. Cheers Paul.

  • I live Italy (north!)

    By the way, today dr Pfeifer (Aeskulap-International) wrote me ... Further, we would like to recommend to come for treatment with our high dose infusion protocol...Two weeks. This protocol uses intravenous application of high dose curcumin and artesunate (a artemisinin derivative) as well as high dose vitamin C and other antioxidative medication. ..The program costs are between EURO 6500 and 7000 depending on your actual amount of medication used.

    What do you all think about?

  • Hi Enzo, North Italy is awesome, I spent some time in the Piedmont region 15 years ago. I think Dr Pfeiffer's protocol is very, very intersting and he seems to have good success. In the comments it mentioned "artesunate (a artemisinin derivative)" I have read that this has potential in the fight against PCa. I believe Artemisin (Sweet wormwood) has been used in malaria treatment, but is being examined as a PCa agent. I live in Australia, so Dr Pfeiffer being in Switzerland is too far away for me, but if I lived in Italy, I would certainly look into it.

  • Thanks for your comprehensive update...a good presentation of your medical, emotional and family situation.

  • Thanks Darryl and thanks for your other comments along the way :) .

  • Paul, As you know, I too was diagnosed at age 49, with what was confirmed by J Epstien at Johns Hopkins to be a Gleason 10, with widespread lymph and Bone mets to distant sites and a bpsa of 148, I can certainly relate to how scary that is, and my prayer was to live to see my only daughter Graduate high school she was a sophomore. that was in 2006 and I will be 61 this July, and she is a second year grad student. It is your constant research and advocacy for this disease that will put you in the tail end of the survival curve, that can go out many years. I think we have come a long way toward finding a cure for this disease, and I hope it is in your lifetime. We are going through Chemo together, I am 1 treatment ahead of you. I think you are right about Dr Tucker. I wish I knew the answer to debulking the primary tumor (prostate removal) in patients with metastatic disease, Some on here have said they did it at Mayo. Your attention to diet and every aspect of this disease is what will help you to make it out to the tail of the survival curve, that can flatten and go for a long time. I wish you the best

    Dan

  • Thanks Dan for your kind words. You are my inspiration on this site, may you continue to prosper and provide me with a role model!

  • Paul,

    I think your attempts to combat the cancer with diet and supplements are a good idea. I wouldn't expect them to reduce the cancer but they might slow its growth - which is a very good thing.

    At this point I think that the ADT + chemo that you are receiving is the best hope. It will be very important to continue the ADT consistently. In your situation I would not try any "off" period. One thing I suggest is that you have your testosterone level checked to be sure that the ADT is doing what it should be doing. If not, there are very powerful ADT drugs including degarelix/Firmagon, abiraterone/Zytiga, and enzalutamide/Xtandi that can and should be used. If you stick with the ADT drug you have I think you should inquire about possible benefit from ADT2 or ADT3.

    Best of luck.

    Alan

  • Thanks Alan, much appreciated. You always make detailed and thoughtful comments, thank you.

  • Alan,

    You gave Paul very good advice.

    Rich

  • God bless.

  • Thanks Bob.

  • Paul,

    You are an active member of your medical team, and that is the best way to fight this disease.

    Rich

  • Thanks Rich.

  • Paul,

    If you have not had one, your Med Onc should order a Guardant360 liquid biopsy. With 2 tubes of blood, this test can determine if your cancer has any genetic defects and propose treatment options. I have had it, results revealed an ATM defect, and now I take Lynparza, a PARP inhibitor.

    Best wishes in your battle!

  • Thanks vandy69, I have had a genetic test (yesterday actually). The genetic counselor said that the testing is to profile which of my family members might be impacted by a genetic error. She did mention BRCA1 and BRCA2 as being possible mutations, but I'm not sure if the results can help target treatment. I will look into the Guardant360 test, but as I'm in Australia, it may not be available to us.

  • If you have a BRCA mutation you might be sensitive to a parp-inhibitor. Without the mutation you will not respond to the inhibitor.

    Joel

  • Interesting, Thanks Joel.

  • Paul,

    You always get me in tears when you say that you want to live longer for your two daughters. I remember you said the same first when you joined our group. Yes, you will certainly do live long enough with the prayers and blessings of all your friends here.

    Thank you for your complete update which is very informative and showing your courage and determination and the ability of managing your case with proper discrimination.

    No doubt Dan is a sheer inspiration for you although your DNA has a different script.

    As Alan has suggested you can benefit sufficiently by first line, second line and third line hormone therapies. However, it is only a matter of buying time with such palliative treatments. Chemotherapy on the other hand is both systemic and cytotoxic and I think you must be aware of the side effects and its curative limitations when not being used at an early stage. I think it was Nalakrats who rightly said ADT will expedite the mCRPC stage but still remains the widely used treatment protocol.

    However there is much hope in radionuclide therapies and the newly discovered isotopes such as Lu-177 selectively binding with PSMA in the cancer cells to release radiation into the cell,

    that can be used in systemic treatments for mCRPC. These particles can destroy the cancer cells like missiles. I have come to know about the Peter MacCallum Cancer Centre in Melbourne is practicing Lutatium PSMA Radionuclide Therapy ( LuPSMA Therapy) using Lu-177. Presently they are conducting a trial with 30 patients and they are planning a larger trial later this year. Although you may not be eligible for this right now this information about the hospital and the type of treatment, I think can be useful to you in future since you are living in Australia.

    You are receiving very good suggestions and advice from all.

    My best wishes to you and your family.

    Sisira

  • Thanks Sisira, your comments are always thorough and well thought out. I live in Perth, 3.5 hours by plane to Melbourne, so the Peter Mac centre is definitely a possibility for me.

  • Great response Sisera, what a great group we have here.

  • Burnett1948.Paulofaus thanks for your story so far. Your actions are inspirational. Best wishes. Your family are worth it.

  • Thanks for your kind words. Best of luck with your battle.

You may also like...