I have been asked for information many times since sharing the story of my treatment and subsequent remission. For those people please find the story from my FaceBook post and the following hospitals where this treatment is currently taking place. I believe there is one in India and Australia as well. If you have further questions regarding my experience, please do not hesitate to contact me.
Facebook post-May 26, 2020
Our Asian adventure is finally sputtering to an end, hopefully, at the departure lounge for the "red-eye" Thursday evening. This has been the experience of a "lifetime" for both of us. I have always desired to live in another country long enough to embrace their culture - and become part of their community. This, to a degree, we accomplished in so many ways. We shared some of these experiences and explorations on Facebook with you. We received a few comments that we must be bat-shit crazy for living here at this time. Phedra said that I should "come out" now (kids are our best teachers) so here goes:
Last December 23rd I was diagnosed with stage four metastasized prostate cancer and informed there is no stage five (Think Frank Zappa). People we know suggested we look into Radioligand therapy a nuclear-targeted, cutting-edge, therapy that's conducted in only 5 locations around the world, Bangkok being one of them. Phedra was all over it and right after our Vietnam cycle trip, I had my first treatment at Bangkok's world-famous Samitivej Hospital. We have been here for three months (one treatment per month). I'm grateful (and somewhat stunned) to report on seeing my last scan that I am now in total remission and cancer-free. I have dropped from a PSA of 988 to 0.31 in 3 months. A miracle of modern medicine.
So, there you have it. If I can encourage any of the males reading this to have their prostate checked regularly and a PSA, I would feel that someone out there may benefit from seeing where my laissez-faire attitude got me. Now I pay homage to the great Gods of Medicine... and so should all of us.
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I had Lu 177 PSMA treatment in Germany in 2016., It is provided in many centers in Europe, Australia, India, South Africa etc. Many members of this forum have had this treatment. There are clinical trials in the USA and a large phase 3 RCT, the Vision trial is being analyzed.
Early? My last and final treatment was in May 2020. Read my post to Alangeorge it is more user-friendly than anyone else's posts I've read on the subject.
My mistake. I was misled by the “two-decade-old” tag line in the title of your post. So is there anything substantively different here than the Lu177 treatments folks have had in Germany recently?
Sorry I do not check my posts too often as I try to stay positive and it's hard to do with so many sad stories on here. Yes there are a number of advantages to going to Thailand. First is that Germany preforms the Lute -177 treatment on a patient once every TWO months. I had monthly treatments. I stayed three months whereas you would stay in Germany for half a year for the same result or join a frequent flyer cl;ub in the time of Covid. My mets (even the bad one on my spine) cleared up and restored themselves. I am now playing oldtimers hockey again. I went back when my PSA started to climb last year and had IMRT for 20 sessions and now my PSA is holding at 0.01 with a shot of Enantone (Leuprorelin acetate) every three months and I'm holding so far. All this is in clinical studies here in Canada and unavailable to me. Samitivej Hospital was voted "Best Hospital in the world" 2018-2019.
It was 3500 CAD for the gallium and $20,000 per treatment. Living in Bangkok for 4 months, nice apartment ( with pool), Thai take out everyday, hospital and oncology the total bill came to $80,000 (50,000 US). No biopsy, no hormone shots, no radiation hangovers and no nausea. I sat in a leather armchair and received my needle then laid on a hospital bed playing with my phone for an hour, then a nurse with a Geiger counter told me I could leave but stay away from children under 10 and pregnant women for four hours. That's it. I ran 5k daily almost uninterrupted with my wife after one rest day. If I need another treatment down the line I will return to Bangkok and skip another Canadian winter. My kids are doing fine - they don't need the inheritance as much as I need the extra time.
I am glad you got such a big drop in Psa from 988 to 0.31 in 3 months, with 3 infusions of Lu177.
I live in city of Canberra in Australia and only 300km away from Sydney clinic giving Lu177 plus other nuclides.
My Psa was 25 when I began Lu177 in November 2018, and after 4 infusions up to May 2019, Psa went to 0.32 in November 2019. But Xtandi was added to my ADT treatment in April 2019, so was the drop in Psa due to Lu177 or Xtandi? Nobody knows.
But after November 2019, Psa shoots up to 30 by 24 July 2020 when I had a 5th infusion pf Lu177. Psa went to 8.7 by 2 October 2020 when I had a 6th Lu177 infusion. Its nearly a month after that, and Psa is 7.9, so Psa is beginning to flat line. I was given Veyonda to make Lu177 more effective and was told that although Xtandi may not have any hormone manipulating effect, it may have also boosted Lu177 effectiveness.
So now I wait and see unto 4 November for next PsMa scan to see what Pca mets look like, and on 13th I talk to doc giving Lu177,to see where from here. If specific uptake value ( SUV ) for Ga68 has gone low, it may be pointless having more Lu177 until a higher SUV occurs because mets are continuing to grow, after having been suppressed for some months.
Its a bit difficult to predict what may happen because so many of my treatments resulted in Psa going up-down like yo-yo with scans showing continuing growth. However, PsMa scans in August 2019 and in July 2020 indicate all soft tissue mets have gone, and many bone mets have gone, but a few were not fully killed by Lu177, so they came back to life.
Some mets sites have been repaired by my body.
I cannot have many more infusions of Lu177 because there is risk of very bad side effects resulting from accumulated radiation. Possibly I could have more Lu177 in 2021, and Melbourne research shows that a man can have several years of Lu177 repeats to stop Pca from getting out of control.
But I just do not see that having Lu177 will lead to remission. Remission is where the Psa goes to < 0.01 and undetectable and stays there for 5 years without any treatment at all.
I have witnessed that a Psa drop to 0.32 is nowhere near remission.
The mean time for success with Lu177 is 14 months where Psa may have gone low from initial start figure, then back up. 70% of men get a benefit of extended life, and in my case, I began with Psa 25, and Psa nadir of 0.32 was at 12 months, and Psa was back to where I began at 20 months. That cost about usd $27,000 including scans. I travelled 300km by train with Govt subsidized fares, and stayed 2 nights with my older sister in Sydney. I am not insured, and our Medicare does not pay anything except for part of PsMa scans which cost me usd $500 each. I don't worry too much about the cost, and I have had about usd $110,000 worth of other treatments all paid by Medicare, since my dreadful diagnosis at age 62 in 2009 with Gleason 9 at PG which was found to be inoperable in 2010. Psa was only 6 then, and highest Psa has been 50 after failed chemo in 2018.
I could have more chemo, or maybe Ra223 if my Pca is thought to only be in my bones.
It depends on next PsMa scan.
Meanwhile at age 73 I have a good QOL, and cycle 200km a week to stay fit.
While my life may have been better with a caring wife, that never happened, so I care well for myself. of course so many men with wives at my age have to care for them, and cope with their Pca as well.
Life's a crapshoot at best Patrick. I'm just beginning to think that the Lute 177 may not last but cycling by busy highways might take us out in the end anyway so enjoy each day ( and ride).
I havent read your story but like yourself I believe my Lu177 treatments have been valuable in prolonging my life, following a Gl9, pT3bN0Mo diagnosis. I had 4 treatments in 2017 that 'removed' 6 PSMA avid PC soft tissue foci in my pelvis but other mets appeared in 2019 which I am now dealing with in spite of 2 further Lu177 treatments in 2020. A valuable reprieve, yes, unfortunately not a cure. I believe early Lu177 treatments are the way to go.
I had extensive bone mets but nothing in my soft tissue. Everyone's Cancer is different I'm learning. I haven't never , not once felt like I had cancer. I cycled 680 km in Vietnam one week before my first treatment.
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I have a son and 2 beautiful grandkids in TO
PARP inhibitor Olaparib, phase 3 study findings (PROpel)
MRI prior to HDR Brachy and HDR intensity.
PSA holding low!!
