Hi everyone. Hi! My father at the age of 71 was diagnosed with metastatic prostate cancer (PSA 944) on April 17, 2017. With uncountable mets in bones and Gleason 9 (4+5). He was on ADT for 3 years + Zometa.
In May 2020 Father starting to have some bone pains and with all this Covid lockdowns he could not get to bone scan or his doctor.
In July 2020 finaly we are learning that his PSA is 174 and he is mCRPC and scinti shows "superscan" .
Aug 2020 PSA 202 startting CHEMO with Doxetacel and Denosumab
(Xgeva) .
September 2020 PSA drops to 42, but alas in October after 4 rounds of CHEMO + Denosumab (Xgeva) PSA got 250 and week after 305!!! New line of therapy.
And we are in Kaliningrad Russia and we don't have good private clinic here. So he is tacking free goverment treatment. And with all that burocracy finally he got his free Abiraterone pills in December + 1 shot of Xgeva again (and this is important as we learnd later). So unfortunatly he was almost 2 month without any medication and 1st month was ok, but 2nd month was with bone pains and light pain killers. And we even didn`t take PSA levels, because probably they got somewhere to 900 again.
And in new 2021 he is looking good and feeling much better except 1 major side effect: Bisphosphonate necrosis of the jaw And he is was back on pain killers and stoped Xgeva. Now we have to wait few month to see what will happen with necrosis bones parts.
But in meanwile i am looking for new treatments for future. And i am very intresting in Lu 177 PSMA treatment. We don`t have it in Russia, but we have Ra 223, wich with some huge burocracy we can probably get almost for free.
My husband is from Istanbul, Turkey. We lived there for 10 years, now in Moscow. I speak Turkish very fluently that is why i am thinking about Istanbul Onkology Hospital in Istanbul. It`s new, it`s near my turkish family, so we don`t have to pay for hotel. We don`t have to flight back immidiatly and stay in summer house between injections. I spoke with doctor and he said that they keep patient for 2 days in hospital and they are taking patients that already failed for other options, and not after Ra 223.
And for Ra 223. It`s in small city near Moscow and he can stay with me for awile. But to get that for free from some federal programms you have to jump some hoops and fight with tons of paperworks. Plus Ra223 is only for bone mets...
p.s. Yes, they have Lu 177 PSMA treatment in Istanbul and as i recall their price was around 10000$ for 4 rounds (for hospital room and 68 PSMA scan you have to pay additional). If someone need there is link below:
So main question is: is it better to pay almost all fathers savings for Lu 177 in Turkey or try to get Ra 223 for free? I know they are totaly different in work, but i got sad reading soryes on this forum, when people didn`t get a lot from LU 177, or it just worked for few month...
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Abiraterone should work for some time now. You can currently rely on that. Both Radium 223 and Lu177 will not cure your father. Radium may extend survival by three months or more and Lu177 (my guess) six months to one year. Simply said, Radium 223 will stop bone metastases to grow further and reduce pain. Lu177, or better Lu177 combined with Ac225, will destroy the metastases in part, so it is more effective. But in the end, it is not curative.
Lu 177 PSMA will treat the cancer anywhere in the body (bones, organs, lymph nodes). Ra 223 will treat only bone metastases,. If he has a large amount of bone mets, the Lu 177 PSMA could cause bone marrow suppression. This complication could be reduced if Ac 225 is also used in the treatment and a lower radiation dose of Lu 177 PSMA is used.
You could go with the Ra 223 and see what happens and then consider treatment with Lu 177 PSMA/Ac 225 PSMA. Before doing the Lu 177 PSMA treatment they should do a FDG PET/CT to see how much cancer does not express PSMA. If most of the cancer does not express PSMA treatment with Lu 177 PSMA may not be effective. and it may not be indicated.
the FDA recommens not to combine Ra223 with Abiraterone. Also, the PSA value will be rising while you get the Ra223 cycles. Her father's PSA will get very high, he will probably stop with Ra223 then.
If the FDG-PET/CT shows Lu177/Ac225 can be effective, the treatment should lower the PSA value. And you can get that while using Abiraterone.
I agree about not to combine zytiga with Xofigo because the increase risk of fractures, particularly in a patient who can not be treated with bone agents.
I understood they were looking for a different treatment and go from zytiga to Xofigo or to Lu 177 PSMA.
She said she is looking for new treatments in the future, (new been the key word). I quote:
"But in meanwile i am looking for new treatments for future. And i am very intresting in Lu 177 PSMA treatment. We don`t have it in Russia, but we have Ra 223, wich with some huge burocracy we can probably get almost for free."
Xofigo is indicated in patients with symptomatic bone mets, PSA flare with Xofigo does happen but it could be associated with improvement in ALP . Progression of the cancer in soft tissues may occur during Xofigo treatment since Xofigo is not a systemic treatment and it only treats mets in the bones.
Tango, I did not think of a PSA flare. The Radium 223 therapy consists of six infusions given over six months. If he cannot take Abiraterone during that and his current PSA is probably 900 ng/ml now, I do not think her father has the time left for this therapy if he cannot take Abiraterone then.
Thank you very much for very valuable advices. Yes, i am hoping that Zytiga wil work for sometime. But when it will start to fail, we will have 2-3 months before he gets much worse and could not travel by plane.
If you should decide to get the Lu177 treatment I would not wait. It may be too late for your father when Abiraterone does not work anymore. They offered four cycles (rounds) of Lu177 and usually there are six to eight weeks between these cycles.
I was told by my MO (Sartor) that it would need to be one or the other, you can’t do radium 223 and then LU 177. I asked that question a couple visits ago.
Both would work better if not for the superscan. I think he might have more immediate pain relief with Xofigo.
You cannot combine Zytiga and Xofigo (and probably not Zytiga and Lu-177-PSMA). That combination is dangerous because it causes bones to fracture and collapse, especially dangerous because he cannot take Zometa or Xgeva.
There is another danger in very advanced cases using Lu-177-PSMA when there is a lot of non-PSMA-avid cancer present. The Lu-177-PSMA destroys only the PSMA-avid cells, giving growing room to other cells. This is probably why the benefits seem to disappear quickly in some men. You can easily check for that by having two PET scans on consecutive days - a PSMA PET scan and an FDG PET scan. You can read about this "repopulation effect" here:
Can you get cabazitaxel? It is approved for use when docetaxel fails. Because he had such a good response to his first taxane, cabazitaxel (Jevtana) may work for him. In clinical trials, it is being combined with carboplatin - the combination seems to improve results.
If he can get a biopsy of one of his bone metastases, there are certain genomics that may sometimes suggest a particular line of therapy.
Thank you very much for this very valuable reply. He just started with Zytiga and i hope that it will work for a while for him. Maybe even reduce superscan to just a lot of mets. And after that maybe it will be better to quick jump to Lu-177-PSMA. Because i am afraid that we will loose preciouse time with all that burocracy in our small hospital.
Thank you Tall Allen, Tango65 and GP24!!! I got private message from fellow concerned daughter from Russia. And she said that they are starting Lu-177-PSMA trials in small city near Moscow. So when time will come i hope we will get in trials. Оr maybe if he is lucky and Zytiga will work for much longer (like for 2 years) ... maybe we even will get that treatment after sertification in Russia. I saw news that they already produce their own pharm version of Lu 177 and even sell it to other countryes. So it is logical that we will have that kind of treatment.
Every person’s journey with prostate cancer is different. Many men have gained some time with LU177. Unfortunately no one can predict the future. LU177 does not work for everyone. Just like Chemo does not work for everyone. My husband was diagnosed at 72 in 2017. He was on Lupron every three months and started Abiraterone for two years and we called this our honeymoon. Very good response. But in July 2019 had back pain which turned out to be cancer in the spine and had compression fracture of several vertebrae. Treated the Mets in spine with radiation. Scans showed progression so started chemo with Doxetacel which failed after 3 treatments. So we had the choice of RA223 or a clinical trial of Lu177. We chose the clinical trial. In the spring of 2020 he had two treatments and then a scan in May. Scans showed progression and LU 177 did not work for him at all. He only had bone Mets. We then tried Xtandi which showed no decrease in PSA and that was discontinued. We determined with our Oncologist that we were out of options. He did a biopsy of a bone met for genetic testing. No mutations. Since we were doing genetic testing had to wait to start Hospice until results were in. Started Hospice early August and my husband died October 15th. 2020. Perhaps trying to discuss this with his Oncologist would help. We had our oncologist and one at the university hospital doing the study both recommended trying Lu177 but none of these treatments work for everyone and At the point of very large number of Mets LU177 was not the miracle treatment we had hoped for. But remember we are a sample of one.
Sorry for your loss... Father just starter his Abiraterone phase and i hope it will last long enough to take care of his MRONJ and gain some strenth after CHEMO before next hevy battle
I have no knowledge as to which is better. Or possibly even a third way as Tall_Allen has suggested. Everything about this disease is confusing. I would be concerned about leaving father broke.
Yes, leaving him broke is not very good option. Of course we will help him with expences in treatment but it is better when you can get that kind of treatment with insurance money. Hope that we will get in those new trials in Russia
It`s looks like price that our doctor said is even lower that price in India. And in Istanbul we will have place to live for long time period. And we will have family support. I will try to get him in to klinical trial here in Russia when time will come.
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And he is was back on pain killers and stoped Xgeva. Now we have to wait few month to see what will happen with necrosis bones parts. 
Update On Eclipse Trial-another failure. Has LU-177 worked for anyone?
The prices for Lu 177 in Germany
Lu-177 in Austria - Report and underlining high importance of both FDG and PSMA PET/CTs 
Leaving for Germany for LU-177 treatment
