Hi Folks, a quick summary of where I stand and then some questions about potential next steps. I'm 56 years old and in the late stages of the ongoing battle - had 3 surgeries, radiation, chemotherapy in 2016, castrate resistant, on Lupron for the past 2 years, did Zytiga and Erleada, and about to do a 7th Docetaxel "juicing" (sounds so much healthier than infusion). The chemo is helping but not to the extent we had hoped - PSA is staying between 300 and 400. I have several bone mets and some soft tissue mets (mostly lymph nodes). My oncologist has suggested my next step would be Radium (Xofigo), for the bone mets, but not sure what he had in mind for the soft tissue mets. I live in Ottawa, Canada so our health system is not very pro-active - the doctors basically follow a "flow chart" and give you what's available - they don't promote other leading edge treatments that have not been approved yet.
With that in mind, after all my research, and reading this forum I feel my next step is Lu177 or Ac225 at Pretoria University, in South Africa. After getting in contact with a Nuclear Medicine doctor in Montreal by fluke and discussing my situation he warned me that higher doses of Ac225 leaves you with permanent and severe dry mouth - making it difficult to eat. He suggested I do a combination of Lu177 and Ac225 which would allow for a lower dose of Ac225 and thereby minimize the dry mouth issue. I could then follow up with another combo when the PSA starts to rise, or just Ac225 on it's own. I threw out the option of a combination of Xofigo and Lu177 to start, and then a combo of Lu177 and Ac225 in the future. He thought that was a valid option.
So my question are;
Has anyone done combinations of Xofigo, Lu177, Ac225, or other. If so, where and how effective was it and what were the side affects?
Has anyone had treatments at Pretoria University in South Africa? If so, how was the logistics and process for the whole procedure, and how was the medical team there?
Can someone propose some alternate treatments that I haven't mentioned as I'm open to anything at this point.
Thank you for your feedback - Cheers!
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Zee5
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My initial plan was to do Ac225 in South Africa because of the much lesser cost. In Heidelberg Germanay, one Ac225 treatment is about 12,000eu (about $17,600cdn). The same treatment in South Africa is R 8,000 (about $720cdn). Huge difference in price and worth the extra travel time and airfare. Looks like a no braine, assuming all other things being equal.
The first step is seeing if you are PSMA-avid. You can get a PSMA PET scan at UCLA for $2700. I don't know about combining Xofigo with the PSMA-based therapies; the concern would be toxicity of that much radiation.
An alternative clinical trial worth investigating since you will be traveling anyway is the Th-227-PSMA-antibody trial. Th-227 is an alpha-particle emitter (like Ac-225 and Ra-223). In fact, one of the decay products might be unchelated Ra-223 (essentially Xofigo), so it might provide the combination you are looking for:
I did have a PSMA PET scan at UCLA in 2017 and it did show 3 soft tissue cancerous masses which I had surgically removed the week after. So, I think it would be safe to say if I was PSMA avid then, I should be PSMA avid now. South Africa does offer the PSMA Pet Scan for about $650cdn which I would do the day before my Lu177 and/or Ac225 treatment.
I will definitely look into the TH-227 PSMA Antibody trial. Thanks for the tip.
Hi Zee5, I'm 72 now, but diagnosed at 62 in 2009 with inoperable Gleason 9, 9/9 positive biopsy samples, but Psa only 6. I had EBRT and ADT and processions of treatments before I got to chemo which didn't work, Psa 12.
I live in Canberra in Australia, and was able to travel to Sydney or Melbourne for treatments I could not get here. I've had about 6 x PsMa-Ga68 PET/CT scans since first mets were found in 2016, each cost about usd $500.
There was no Medicare rebate, and I am not insured.
After 5 shots of chemo that failed last year, I was able to be referred to Theranostics Australia who had begun a clinic for Lu177 in Sydney.
I paid about usd $27,000 for the 4 infusions. There was an initial charge of usd $350 to be assessed by docs at TA and get first Skype talk with a doctor.
I began Lu177 with Psa at 25 last Nov, and by May it was 1.7, and is now 0.4, so I got a good result, and Psa continues to fall, while also taking Xtandi, fully paid by our Medicare.
I met 2 men who had travelled from US to get their Lu177 in Sydney.
I would not choose Ac225 initially because side effects of dry mouth and maybe dry eyes are more certain to occur and be much more severe than for Lu177.
Lu177 takes time to work, and there was not a huge Psa reduction after 2 shots, but that often happens, but it had begun to work well on countless lymph node mets in soft tissues. It was slow to work on my countless bone mets, but the PsMa scan I had months after No 4 shot showed bone mets were not growing, but healing up, no new mets were seen, and the PsMa avidity had gone low, because the Pca had reduced a heck of a lot. Psa went low, so conclusion was I did well with Lu177.
I might need more Lu177 and I could have it without much increasing side effects. But having additional Ac225 would be dangerous IMHO, so the Lu177 is the gentler nuclide that should be used first IMHO.
The Germans are combining the two, and men are getting the theranostic treatment there at the early stage of their Pca, not the late. You could still have ADT and maybe some IMRT for mets and chemo later.
There's a trial in Melbourne to give men Lu177 early, depending on what their diagnosis was. It would have worked well for me in 2009, because they could not operate; I was in the 1% of men with low Psa but with inoperable PG, and with probable multiple mets which were undetectable in any scan until the PsMa scan arrived here in 2015.
Ra223 is used for bone mets and it replaces calcium at bone Pca lesions where there is activity at lesions involving calcium uptake by Pca. But it also goes to anywhere else where there is Ca uptake, and reports I've read suggest Ra makes bones generally brittle, it really seems to be end stage stuff, and does not work on the theranostic principle of being targeted to Pca cells by a ligand chemical taking a nuclide to a cancer site. Lu and Ac are not able to be uptaken to replace some other element in our body, so they are just pissed out when the short half life reduces and ligand ceases to work. But non radioactive Lu or Ac would do no harm because they become inert to our body, the few micrograms used for therapy is insignificant.
Patrick Turner.
I think you are making a good choice. I talked my doctor about Radium 223 at my last appointment and he said he has not been impressed at all with it. Then I mentioned AC-225. He said that once that gets approved and they work out the problems, he thinks Radium 223 will be an obsolete teatment.
Hoping things go well for you. Please let us know.
The treatment you are considering is available in Australia too, I believe. Our dollar is down so you may find treatment here to be quite good value. Also PSMA PET scan is around $600 AUD up from $450AUD in 2017 when we had it. Good luck!
Hi carlo. We’re receiving world class treatments here. And because we’re citizens so far most of them have been delivered at no cost, except the scans and MRI. We’ve both contributed our taxes for 45-50 years however we’re very grateful for our healthcare system. Not perfect but working well for us. Good luck! 🌺
Can’t wait to see Australia. If it’s for a psma scan that’s fine with me. Might stay long enough to have two. Governments run on taxes. I like my toilet to flush.
Zee5. My brother has had 4 Lu-177 injections in Sydney, Australia. Two over 6 weeks then two more 18 months later, after his PSA started to rise again. It cost A$9600 per treatment. He was kept after the infusion for 3 hours and then discharged. So you would have to find accommodation in Sydney (or Perth) which is expensive. Look at the Theranostics web site. I am meeting the head of a Lu-177 research team this Friday in Sydney. (I am finalising the 3rd edition of my book: "An ABC of Prostate cancer Today" and have a chapter on RadioLigand Therapy - available from Amazon in Nov 19). I will check if they are still accepting foreigners for clinical trials.
In 2013, I went to South Korea for Proton Beam Therapy for my cancer. (Check with their National Cancer Centre to see if they are now doing Lu-177 there - they claim to be the top Cancer centre in the world - I don't disagree). So I think travelling overseas for treatment is no big deal. I grew up in South Africa, so would be happy to be treated in any teaching hospital there using Lu-177. The Lu-177 therapy is simple and so is the imaging. It is possible to rent a car, live in northern suburbs of Joburg in a secure 4 star rental compound, and even do the tourism thing between the two cycles. Alternatively, fly there twice.
My brother still has some residual dryness of mouth, but it is bearable. The Weill Medical Research Institute in the States are doing good things with lower doses to protect the saliva glands.
Thank for the info Alan - much appreciated. Glad to hear your brother had success with Lu177 and it was 18 months before his PSA started to rise again. If you don't mind me asking, what was his PSA before his first round of Lu177, and the level of bone and soft tissue mets - I'm trying to see if Lu177 alone is for me, or a combo of Lu177 and Ac225, or just Ac225. Also, at what level of PSA did he go back for the 3rd Lu177 treatment (18 months later).
Even though I'd love to see Australia, I believe the cheapest treatments are still in South Africa. I would probably just go home between treatments at this point.
Looking forward to getting your book as well. Good luck with that.
This second edition of An ABC of Prostate Cancer Today is an updated and expanded version of the best selling book An ABC of Prostate Cancer in 2015. It tells the author's Journey over 4 Continents to find the Best Cure for his prostate cancer.
Parts 1 and 3 of the book are mainly focused on his being diagnosed with intermediate risk prostate cancer, and the process he went through to finally have proton beam radiation therapy in Seoul, South Korea in early 2013. Part 2 of the book focuses on the treatment options available to all newly diagnosed prostate cancer sufferers.
It also includes a substantial section on diet and nutritional issues that the author believes are critical components of any prostate cancer prevention and/or treatment regime. He also includes a seven point plan to aid sufferers recovery from the disease. An important inclusion are more than 100 questions that patients should consider asking their doctors.
Alternative therapies are discussed in some detail. The book should appeal to newly-diagnosed men as well as to men that have more advanced prostate cancer. Unlike most prostate cancer books available that are often out-of-date, this second edition includes details of the very latest diagnostics and treatments available. It includes information that may assist men with metastatic cancer who have a poor prognosis.
In 2016 had IMRT with Calypso at Epworth in Melbourne to give PG and extra 31Grey over the initial 70Grey EBRT in 2010. Both lots of RT did not seem to be very successful. ADT did the main work of keeping Psa low. Consequent PsMa scans showed high PsMa avidity in PG so this showed how radiation resistant I seemed to be. But Lu177 gave a very different result. There's a limit on RT to PG because when its not removed by RP, nerves are not cut, so I am still continent, although my sexuality is totally exterminated. Too much RT can damage prostatic urethra and the last thing you want is that bit of piss pipe to constrict, or rupture, because no surgery is possible due to high RT damage. There are those who say brachytherapy is best, and 150Grey can be delivered, and maybe that's needed, but success is down to surgeon skill in placing the gold pellets evenly and so that can be impossible, so early Lu177 is likely to give a better outcome. PeterMac is trialling early Lu177 for some men, and I am not sure about criteria for that. I would have done well with that in 2010, but it was not available here until 2015 when Theranostics Australia started up in Perth.
Patrick. I have followed your journey on this web site closely. I admire your grit and determination. Tomorrow, I'm attending the PCFA PCa sufferers conference at the Garvan. I want to catch up with AP Louise Emmitt who is a key player in Lu-177 who is one of the speakers. I want to hear where she thinks RLT is going.
I hope to be able to expose my new book thats going to the printers early in early October. Its grown from 285 pages (1st Ed) to 352 p (2nd Ed) to 462 p for the 3rd edition. It goes comprehensively into mCRPC and covers 22 technology advances that might change the PCa scene down the track.
I think you live in Canberra. I'm in Concord in Sydney. If you get down to Sydney, I wouldn't mind catching up for coffee.
Hi Alan, well, you might find talking to Professor Louise Emmett is like talking to a young female version of Einstein and she knows a heck of a lot about cell behaviours instead of stars. I think I was lucky to have had her supervise my No 3 Lu177 shot at Waratah private while she was waiting for funding for her latest trial at St Vincents. She had a son who cycled 500km a week, so she knew about us cyclists. She wanted me back on my bike asap, at a time when cycling was giving me pain after a ride. At that time, about April, I was thinking maybe a wheelchair was where I was heading. But I am back on bike now, and recovered well without pain after attempting some frightful steep hills here. 2 days ago. I'll stay on flatter roads today.
I heard about the Garvan conference in Sydney, that's a good place that Garvan Institute, lots going on. I have a website page with my Psa graph and history since 2008 at turneraudio.com.au/Patrick-...
It needs updating because since the last update, Psa has gone to 0.4 and I have got back to cycling without pain after.
Gee, 462 pages for 3rd edition of book?
The bigger a book becomes, the harder it is to keep editing it, and when somebody downloaded my site on audio craft work it came to over 1,600 pages so one man made 3 volumes. There's more stuff there than I can remember, but I didn't want to make money from keeping the old craft of analog audio alive. And as I knew more as years went by I changed many pages, and biggest edit was 2016 to 2018 when many layers of html coding made the page source look like garbage, so I learnt how to manually tidy up html coding.
The essence of a good book about anything technical is to explain with analogies, because most ppl have limited education. They are able to learn about lots of things, but in today's world nobody can know all things about science, something a man might achieve in 1400, but not now, because they are time poor and have to specialise in knowing a lot about one thing to survive. How do you get a bricklayer to understand his prostate cancer?
I'll be in Sydney for 26, 27, 28 September next week because I have a nephew getting married on 27. I'll be staying with my sister, I doubt I'll have time for a coffee with you, but to you'd maybe learn more about my story by reading my website page with its graph of Psa since 2008.
Now the dots to make the graph are when I got Psa tests and for each dot I had a meeting with specialist doc, so you can see that the expense by Medicare on keeping me well has been immense. Maybe Aud$200,000, plus I have spent maybe Aud$ 65,000, and I could say that was all due to being diagnosed TOO LATE.
Well how did that happen? I had regular Psa tests for previous 10+ years before 2008. I knew I probably would get Pca, because of family history of women getting Brca, Oa etc.
Docs said no need to act until Psa was 5.5. But when Psa did get to 5.0, I acted, and the got a biopsy booked for late 2009, and I had Gleason 9, with 9 positive samples out of 9 taken, and then the attempted open RP could not proceed because there was too much cancer outside the capsule.
Now if I had a biopsy in 2004, when Psa was about 3.0, at age 57, I bet Pca would have been found and then an open RP might have got all the Pca, and I may have never had any more trouble with Pca, and no need for ADT and the $265,000 of following treatments, and I'd be a lot healthier.
So by earlier action based on Psa threshold of 3.0, not 5.5, $265,000 could have been spent on more worthy medical problems of other ppl.
Now the total costs of an RP in 2004 might have been about $8,000.
Early detection in my case would have funded 33 other patients getting RP early enough and preventing so much future expense on Pca, which is often a story of trying to catch the damn horse after its bolted.
Politicians and AMA really don't get all this. Its like as if they want ppl to get sick to keep them employed, its like lighting bushfires to get the work of putting them out.
Psa for a man who is never going to have PG problems is about 0.7 at 40, and 1.0 at 60. I have a cousin of 74 who has never has Psa exceed 1.2.
So at 57, with my Psa at about 3.0, it was 3+ times "normal" for a man who won't get Pca.
If your blood tests show cholesterol at 3 times normal, then do you not get warned? are you not stupid if you ignore this? If your BMI is 40, and you are pre-diabetic, then don't you think the govt should assist you to exercise, eat better, to avoid the horrors of diabetes and dying early?
What is best practice of disease prevention in other countries? Or is Australia a country where once a man gets old, the Govt would like him to die soon, to avoid paying a pension? The medical establishment keeps these men alive with all these new treatments, and votes are bought by promising PBS funding and maintaining Medicare, but there's still this big cost to society as a whole.
Most old men over 50 would be happy to get full PG examined at Psa of 3 or lower, and then see the money saved spent on their kids and grandkids.
A man of 50 might not like the neutering effect of an RP. Its instant ED for most, but if done early enough, most nerves are spared, so recovery is OK after ED. A man has "dry balls" after RP but at 50 he's not siring a new family, sex is for fun, ecstasy perhaps, if he can ever find a partner.
There is or was a Dr Strycker at St Vincents in Sydney who claimed he had The Best history of nerve sparing in RP ops. He charged about 3-4 times the price or most other uro surgeons. This much suited the rich who found an extra $30,000 not rebated by Medicare was peanuts to pay for keeping Rodger fully functional.
I was led to think "she'll be right mate" in the public health system, no need to go the most expensive doc in Australia. Well look how that turned out. But whether Dr S claims were true or not has never been proven, where was the list of patients ? and where was their medical record? So we are denied the chance to look at what really happened to other men.
That will do for now, I have some tinkering in shed to do,
then cycle out for lunch and ride maybe 40km after.
You should immediately contact the BC cancer agency as they are headlining an Lu177 trial in conjunction worldwide through Novartis...here’s a good starting link
Sorry I forgot about mets. My brother had at least 30 bone mets. Spine, ribs, pelvis, knee, thigh bone etc. Probably had soft tissue mets as well. All gone now, but are likely to come back. But it will buy another 18 months. He can go to abiraterone, then back to enzalutamide, then Erleada, then darolutamide . By then docetaxel will be available with the Starpharma dendrimer delivery technology, which might offer almost indefinite remission.
They are busy...the administrator handles three researchers...it took a lot of persistence to get a callback. You’re definitely someone they’re looking for.. I didn’t qualify for the Lu177 trial as I was hormone sensitive... a blessing . Can your GP send your file their way...I think this might help expedite your case.
Kim N. Chi, MD FRCPC
Professor of Medicine, University of British Columbia
thanks so much. I did get a call back from the Kelowna office and they will try to get the proper contacts in Vancouver. Your info is perfect - will get that to my doctor asap. Cheers.
Sounds promising......cross our fingers this all works out. I would certainly expect the princess Margaret is cooperating in these trials... details should be clarified with your correspondence through the BCCA.
Thanks so much for the article. Will definitely look into it. That's about the 4th time I've heard of Dr. Maha Hussain in the last month among this chat forum. May have to go pay her a visit!
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