I’m in a clinical trial at Hopkins and I’ve just I had my second dosing of the lutetium. I was identified as being “avid’ and therefore a good candidate for this treatment. My PSA was doubling every month and a half. I got off DoxyTaxol in November 2020 and my PSA went from 28 to 90 in March. The second treatment on April 8 showed a PSA of 60 and my bone pain has diminished significantly. I have no tumors in the lymph glands as I had proton therapy destroy them. I have lived for 13 years with this aggressive cancer. I would say don’t be afraid to go outside of the box if traditional therapies fail you.
Only God knows our future and I’m not sure how much lower this will go but I’m optimistic. That being said, I had about 12 tumors scans were able to identify in various locations of my body. I was told that the Lutetium gravitated to those sites extensively. I don’t know if anyone else has heard this but I’ve been told that by the end of the year lutetium would be a standard of care available to all of us. Good luck all!
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Not too many years ago the only systemic therapy for prostate cancer was ADT. When it failed, you were done. Now we have a bunch of new therapies and when one fails another might still succeed and keep you alive for months or even years longer. I think that Lu-177-PSMA is one of the most promising of the new therapies - though only for those who are "PSMA avid".
Good luck with it. I hope you're one of the men who gets years of symptom free life from it.
As far as I know, the trials that have occured so far with LU-177 have selected roughly 70% of the patients, eliminating around 30%.
They have been selective in the trials so far, eliminating patients based on low PSMA expression and FDG discordant disease.
Just looked up a trial called the TheraP trial done in Australia with LU-177 VS. Cabazitaxel. They selected 200 out of 291 (69%). That's probably a typical number. A small number (11) were eliminated for other reasons.
Thanks! Frustrating not to have a less costly, more widely available way to test for PSMA expression. Especially since it’s a prerequisite for one of the most promising therapies (LU-177) in a long time.
Hi there, when I had my LU-177 treatments I learnt that in Germany they do not do chemo therapy any more, so lets hope it does become the standard of care everywhere.
I had my first Lu-177 infusion in early February 2021 in Australia. I was metastatic at that atage and had tumours through out the body. Before the infusion my PSA had risen to 50 after 12 months on enzalutamide which was no longer working. My prior treatments before LU-177 were Robotic Surgery in early 2018, Eligard and Enzulutamide. Following the first infusion my PSA reduced from 50 to 3.5. I had my second LU-177 infusion on 8 April 2021 and will obtain results in about 3 weeks after scan. While I appreciate LU-177 may not work for everyone it does seem to produce results to extend life and should be standard of care available to all of us. Best of luck with your treatment.
He didn’t say it was his trial He just mentioned there would be one and there is one not started yet in this link. I saw another at clinicaltrials.gov/ but I seem to recall it felt more like newly diagnosed men...I know we felt my husband didn’t qualify
I think you are lucky to access a Lu177 trial but whether it gets approved or not in USA is anyone's guess, and I fear there political concerns and Big Pharma concerns that may prevent its approval. Lu177 at it is now is a German invention and with Novartis owning patents on PsMa ligand drug, which presently essential if Lu177 ( or Ac225 ) is to work at all.If USA companies had invented Lu177 "theranostic treatments" it would be approved by now because so many trials have already been done.
In Australia where I live, Lu177 is not fully approved and only accessible by Australians if they try chemo and it fails, and it very often dose just that, and our laws here allow a man to choose whatever he wants if chemo fails. But it does not include access to harmful potions such as ground up cane toads, or bone marrow stem cell transplants from Germaine Greer.
The toad mix turns a man into a toad at midnight, and the GG stem cells make a man into a very grumpy old sheela.
I've had 6 doses of Lu177, and initial PsMa scans showed I was very likely to get a good benefit, and first 4 doses were in 8 months after Nov 2018. Xtandi was added before 4th dose, and Psa noze dived from 25 before Lu177 to 0.32 at 12 months later, and follow up scans showed huge lessening of all bone mets, and lymph nodes had no mets.
But from Nov 2019 the Psa rapidly went up to 30 by July 2020, so I had 2 more Lu177 doses which brought Psa down to 7 by October 2020, and docs could not admit that Xtandi had ceased working, and had had no effect at all boosting 5th and 6th doses of Lu177.
The follow-up PsMa scans then shoed overall bon met reduction, but there were still some active and avid bone mets. But alarmingly, there were a big number of new bone mets which had low PsMa expression, so more Lu177 was considered useless.
So docs didn't offer anything else until I screamed out I wanted Ra223 because that should in theory zap all bone mets because Ra223 depends on calcium traffic, not the PsMa.
So I had my first Ra223 on 26 Feb 2021, and Psa was 180.
My oncologist wanted me to keep taking Xtandi while Psa was increasing 2.7 times per month. I quit taking Xtandi, and I have not told any doc about because I don't like having rows with docs who don't get the science about AR inhibitors.
So then Psa rise began to slow down quite a lot, and I tried to talk to Astellas Pharma about what happens if Xtandi is continued for a year after it ceases to do what its designed to do.
Astella make Xtandi. They would only recommend I talk to my docs, and ignored my emails which suggested Xtandi could become poisonous if taken for too long.
Big Pharma HATED getting any criticism.
So now my PsMa is about 350, and I have some stiffness in lower spine which may be due to Pca advance in bones. NOBODY knows for sure. But doc has agreed to continue with more Lu177, but if blood tests indicate bone condition is still rapidly rising then I'd have to quit having more Ra223 and then be forced back to having more chemo, Cabazitaxel this time, and I read of no reports saying Cabazitaxel works much much better than Docetaxel, and I know what happened last time.
Easter caused a delay in getting Ra223, but next dose is 23rd April, about 8 weeks after first dose, and doc said he wanted to go to say 6 weeks between doses. I have no idea at all if Psa will stop rising fast. I may get some pain relief, but doc giving Ra223 is mindful of not continuing which he said could damage my bone marrow too much. The Pca is damaging my marrow as I type, and when Ra223 is attracted to mets in bones, it also damages bone marrow, and basically its all a game where just enough Ra223 is given to zap the Pca mets, but leave me with enough function of my marrow.
I could be lucky, and what happens over next 6 months might show I get another couple of years to live, but doc has already seen many cases, and he can't share my optimism yet.
I am continuing to cycle around town on my bike, but I've given up trying to go fast and get good ride times, and I am down to 160km a week with smaller distance on each ride.
I will try taking one Voltaren 50 tablet each night to avoid pain at night, and it this works, it could mean by back ache is due to being nearly 74 and with a skeleton that has a bit of osteo arthritis from a life of being a builder, and cycling 255,000km so far.
Research is underway at Melbourne PeterMac hospital on why some men have scans showing they ought to benefit very well from Lu177, but researchers have not found out why some mets mutate to resist whatever any doctor tries to use to kill Pca cells.
But researches had done their first trials of Lu177 in mid 2016 with 31 Pca patients.
Some had had 2 repeats of Lu177 over 3 years and were still alive, so 5 years of survival is possible, but it just does not happen to all Pca patients.
But I am getting old, and I had 2009 diagnosis with inoperable Gleason 9 at PG, and its highly My Pca began in 2004, but Psa was so low I was diagnosed way too late, and so there now has been 17 years of Pca in my body, and mutation of some Pca cells is highly likely, and maybe not able to be treated with anything soon.
I had EBRT, ADT for last 11 years, salvation IMRT, Cosadex, Zytiga, Docetaxel, Lu177, Xtandi, and my Pca has worked up a resistance to all things.
Don't be surprised I ain't posting here in a year.
Just keep an open mind and I see no point in being too optimistic.
Wow! That’s a heck of a lot of LU-177, Ra-223, et al. Don’t want to sound crass but that must have cost a fortune. Where did you have your treatment, Peter MAC or elsewhere? Anyway, you’ve shown you are a real fighter and, I’m sure, an inspiration to so many, so, we wish you all the very best and hope the future treats you well.
In Australia where I live, the company Theranostics Australia began to give nuclear treatments for Pca patients in Perth in 2015, about the same time that PsMa ga68 scans also arrived here at Richmond Imaging in Melbourne, close to Epworth hospital which got the first IMRT Calypso machines. I read all I could about nuclear medicine and decided it was not worse than chemo, and in fact if would become a threat to the chemo industry, maybe another reason why US is slow to approve Lu177 etc.
But after Cosadex failed in 6 months, Zytiga took 8 months to fail, so I had 5 doses of Docetaxel which increased Psa from 12 to 50, and more mets were seen on scans, so it was declared a failure, and by that time, TA had opened a clinic in Sydney, only 300km away from where I lived in Canberra so I could get on a slow train at a fare discounted for pensioners, and so I didn't need to stress myself out by driving in Sydney's atrociously congested traffic.
But my doc said he had one old man of 90 from Canberra drive himself up to Sydney, get the dose at 10am, then drive home at 3pm when it was done.
Cost of each dose of Lu177 was usd $7,200, initial conference was usd $350, and each PsMa scan was usd $500, and I've had about 10 x PsMa scans so far, but maybe won't need more because my Pca is not making much PsMa chemical.
There are other types of scans to show where mets are, FDG PET is one, and I had one of those, also usd $500.
Our Australian Medicare is just great for many things, but it does not reimburse a cent for Lu177 or Ra223, so 6 doses of Lu177 cost me usd $43,200 from my life savings.
While attending the Sydney TA clinic there were men from Japan and other places around south east Asia, and they had interpreters to enable communications.
While in Sydney, I stay 2 nights with my older sister now 76, who has a small apartment, and we get on well enough to allow me two days to see her without any rows on politics or about how we should have lived when younger. She's the only family I have. She survived Brca.
The Ra223 is same price as Lu177.
While getting my doses of Lu177 or Ra223, there is a doctor supervising who is properly fully qualified with nuclear medicine, and these types of specialists just don't exist in most Public Hospitals owned and run by Govt. PeterMac is the exception because it is in Melbourne and fully Govt run, and once admitted, all treatment is free and its a huge hospital that specializes in cancer treatment, and it does leading research work there.
I am not sure if PeterMac offers Lu177 or Ra223 or Thorium et all as normal treatments that are not part of trials, but I did read thy were doing a "Lutectomy" where men who were diagnosed with difficult cases of Pca were immediately given a dose or two of Lu177 to zap whatever they could right at the start of the man's troubles with Pca. In my case, I got Lu177 just in time before my Pca mets mutated to become non-treatable by any PsMa based nuclides such as Lu177, Ac225. I read a little about theranostic treatments based on some other chemistry other than PsMa, but it has not become wide spread treatment yet, but when it does, it should much improve the efficacy of theranostics and many who don't get a complete zapping of all Pca might then get that.
Travel restrictions due to C19 virus may now apply to USA patients trying to get Lu177, but during my Lu177 days before pandemic I met a few men from US who'd decided it may have been better than Germany or India.
Its now begun to get cold here, -2C last night, and yesterday on the bike it was only 14C max, and I needed long lycra and an extra skivi.
I cannot help feeling nervous about my future and whether Ra223 will work; I may be amoung the many who just can't have the full 6 normal doses for it to be effective.
I'm in my shed today, putting in final work to upgrade a tube amp I made in 1994.
Craftwork is rewarding and I've always liked making things.
Not all approvals can be fully granted by governments for fancy-smancy cancer treatments that are often found to work far better than any chemo.Delays of approval mean Medicare funding does not happen.
Here in Australia, Lu177 is partially approved, allowing it to be used with men here who found chemo failed. Maybe the men from other countries can get Lu177 in Australia without having failed chemo. I can't answer that question, but I have seen many other men travel from OS to get Lu177.
Ra223 is similar here. Government here will hot approve Ra223 for Medicare funding, ie, virtually free of any cost to a patient. There's a fair list of things and expensive cancer treatment for OLD MEN is just not part of Govt priority list.
If Govt funded all expensive drugs the cost to nation becomes supposedly very expensive, but Fed Govt had no hesitation to spend aud $130 billion on a rescue plan for businesses affected by C19 virus closing all things down. Millionaire recipients of this mountain of dough laughed all the way to the banks.
Don't talk to me about social justice for sick people. I cannot ease your mind.
So anyone with a house must get a reverse mortgage to fund their medicine not paid for by Medicare. If you had a child with a cancer, maybe you could get crowd funding, but few ppl want to be generous to an older man with Pca.
I do know I just cannot have everything I want. If I cannot get it, I die without it
The time will come when nothing more could be done for me so I'll be referred to ppl handling palliative care. They'll ease me out of existence without much fuss as I have seen happen to others
I'd prefer things to not be like this, but I just can't live forever.
Anomalous, could I have the contact info for your doctor? Sounds like he is on the edge of the action. I've just completed 3 rounds of LU177 in Vienna in December and I can't afford any additional overseas (perhaps India). My oncologist said that I should have 3 more treatments. After treatments my PSA dropped from 279 to 60. All of my lymph mets in upper body are no longer visible as well as the one on my shoulder blade. Lower abdomen mets were significantly diminished. (I guess what I'm looking for is a contact that is close to the approval process and can provide accurate estimate of pending approval for LU 177. )
So far you are getting good response from Lu177. One research doc here found that taking Xtandi boosted the PsMa expression thus making mets attract more Lu177 so thus boosting the zapping effect of Beta particles of Lu177.But you could only have Xtandi if it works at what it was designed for, and you have not already had it, and taken it until it became ineffective.
I'm sorry to read about your $$ problems, but if you own a house, have you thought of a "reverse mortgage" where a bank gives you the dough for medical treatment but gets reimbursed later by taking what it lent you + costs from your estate. After all, a man can't live forever, and can't take a house with him when he passes.......
It may be years until Lu177 is approved in USA, and too late for you.
I will try to keep everyone informed about how Ra223 works or does not work for me during the coming months. Despite all the good stories I have read here about Ra223, it does not mean I might get a good result. The thing about many Pca treatments is that it seems to work well for some, but not for others. And often it looks like something is working well at first, but then it all changes, with big fast rise of Psa, and then comes the uncertainty.
Lu177 looked like it worked well, but then the scans showed I had lots of new bone mets that would not respond to Lu177.
I cannot help suspect that if the Lu177 did manage to zap all my mets in lymph nodes, then what is the condition of my lymph nodes now? Lymph nodes stop cancers spreading from one place to other organs, if lymph nodes are wrecked by Lu177 acting to kill Pca in lymph nodes, then what would prevent my mutant form of Pca in bones from spreading to lymph nodes or organs?
So despite the latest treatments, the human body is so complex that unless the treatment is as good as the human immune system when it does work well, then I can't see how treatments might work to get a cure. We all might like our immune system were able to recognize the cancers we get, but the trouble is that our immune systems just cannot be perfect.
Thus it seems to me the nuclear treatments are good for giving us some extension to lifetime, but its not often that anyone gets a cure.
I get monthly injection of ADT today, and can calk to by local doctor about high blood pressure medication which seems to be quite useless to far.
The trouble with much medical solutions is that some of these things are quite useless.
What you share with us is in many ways with many of us are thinking, especially me I anticipate going on radium 223If this fails. Best of luck to you my friend.
I Hesitate to pass out names based on an off the cuff statement but I would note that Mayo Phoenix is advertising for a Nuclear Medicine Radiologist proficient in , among other things “performing NM-related procedures and therapies (including Lu-177 dotatate, Lu-177 PSMA).” I believe, as the original poster, that the belief among doctors is it will be approved this year. apply.mayoclinic.org/TGnewU...
Ya know, it was such an off the cuff comment-related to my possibly doing a trial at Colgate Weill, that I shouldn’t attribute it. The original poster says it will be available by the end of the year and if thats the case, then all the PCa doctors should have the same info
What you share with us is in many ways with many of us are thinking, especially me I anticipate going on radium 223If this fails. Best of luck to you my friend.
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