diagnosed in 2020 with Oligometastatic prostate cancer (1 spot detected on right ischium (hip)). Had prostate removed via surgery, did 39 radiation treatments to hip and prostate bed and took Lupron and Erleada . Stopped the hormone therapy in July 2022 (psa undetectable for 2 yrs). My psa in 2024 has been rising with doubling times of 6 weeks - currently at .66 - had PSMA Pet scan in June and was negative. have seen 3 doctors and each had a diff recommendation.
- Dr 1 - wait for PSA to inc to 4 and get another scan.
- Dr 2 - go on hormone therapy - both 1st and 2nd generations.
- Dr 3 - same as Dr 2 but add chemo
thoughts? Thanks Jeff
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ND1988
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Yikes. Only Dr 1 wants to find the mets before restarting treatment? And next scan not until psa of 4 for Dr 1?!?
We are in the finding mets phase after failed localized treatments starting in April 2021. His psa will likely be similar to yours for 2nd PSMA in 2 weeks. Previous scan was negative @psa of .31. PSA was .5 in May. Anxiety building… we’ve only met with his RO, who so far says they won’t start treatments until they find the mets. Trying to get an MO on board without success to date.
I have been in your camp before. did not see much on psma scan until psa was around 5 at which time I did lupron and xtandi for 1 year. My doc said I could wait until psa 5 or 10 as long as doubling time was slow. In my experience, fast doubling times with low psa values, say under 1 are meaningless. If 1 jumps to 2 in 3 months that is significant and aggressive. But is is not the same if 0.25 jumps to 0.5. In my case lung nodules were found and presumed to be prostate cancer since they shrunk after a few months of ADT and were not visible on CT scan. I don't see any rush to treat until psa is higher and only then will you find the mets. By the way, my doctor is at Sloan Kettering.
Thanks for your input - much appreciated - once something showed up on the scan was your treatment 1st generation ADT or was anything else added to it? Thanks Jeff
Thoughts? Yesterday, Darryl put up a post titled “observable versus actual metastasis explained”. This resonates with me as I do not want to go after this beast again, with any treatment, without some idea of knowing how far it has spread. But, I also do not want to give this beast time and obscurity (so I would not go with Dr 1). As I do not want to return to ADT unless I have no other options, I would do more investigation before going with Dr’s 2 or 3.
Today, I am awaiting results from last week’s blood biopsy testing and PSMA combined with mpMRI imaging. We anticipate/hope all will come back NED, as in previous two years. Although NED with three investigative methods is a very favorable finding, they are not absolute that I do not face actual metastasis.
As to clear imaging, I have learned enough to understand there is no singular best imaging and that it is hard to know which contrast agent each individual man’s cancer will respond best to. Presuming my current Pylarify PSMA imaging is clear, soon I will have either a fluciclovine or Choline PET for comparison; maybe both. These will be in lieu of returning to Europe for my second Ferrotran nanoparticle MRI, which for me identified pelvic mets that Ga 68 PSMA PET did not. Unfortunately, the nanoMRI is currently not available.
You mean it is not available in the United States just in Europe? I have not heard of it before.. thank you. If so, where in your did you have it done? And the name of the test was Ferrotran nanoparticle MRI?
I am currently advised via senior mgmt at SPL Medical (Europe) that the current focus is obtaining government approvals - possibly Germany first later this year. I would very much like to have my second Ferrotran MRI; my first was in Jan 2016 through the trial at Radboud UMC, Nijmegen. Today I am 'settling' for PSMA's here in US, had three now, with second opinion readings from Europe. I am not aware via SPL Medical nor publicity that a single medical center in US has taken an interest. In my efforts to understand this the history is complicated as this contrast agent was first tested here in US back in the '90's under the name Combidex; it has a bad history here but so far I have been unsuccessful in gaining documents through public record requests to fully understand. In my opinion this is a shame as the Ferrotran MRI identified five cancerous pelvic mets in me at uPSA 0.11, whereas as the Ga 68 PSMA, done concurrently, did not identify any suspicious sites. All this detail matters to me because my focus remains deferring ADT and thereby possible CR for as long as possible.
So is your test available in Europe now and if so in which country? And city?
The last time my son had a PSMA pet scan there was no known new spread since his IMRT and his PSA numbers have remained low on Lupron prednisone and generic Zytiga. but if there’s a better scan in Europe, that can see smaller cancers we would like to be aware of it so any information you can give me and all of us would be greatly appreciated.
Also has the FDA or NIH done any testing on your scan? Or shown any interest in it? There has to be a reason why it’s gaining so little attention here in the US, as it sounds like a very promising scan . And I would like to know more about it and to see it promoted more.
**I just looked it up up and I guess Combidex is the old name for Ferritrans.
As I understand the Ferrotran nanoparticle MRI is in limited final trials in Europe - there is an inquiry form within link below.
From my personal experience the Ferrotran contrast agent indeed identified pelvic mets, at uPSA 0.11, while the comparing Ga 68 PSMA did not.
I am not aware of any investigations in the US - and yes this contrast agent was first known as Combidex and in the US. My speculations as to why no investigations/coverage in US, more than six years after I had this imaging in Netherlands, are not favorable to the US industrial medical complex.
Just reread one of your emails and apparently you had it done through a trial in Europe. That sounds just great.
I researched it yesterday and all I could find was in Germany and two other European countries. Nothing in the USA just like you stated! (I hope it’s not linked to USA pharmaceutical company profits for presently available tests.)From what I understand the PSMA pet scan is still rather new in the USA? But that doesn’t explain why at least one USA company wouldn’t want to be the first to have Ferrotrans. Although it would have to pass FDA requirements and that takes time.
Perhaps the medical community in United States is going to purchase the European version when it’s approved? Would that be possible?
I’d like to have it available here as would everybody else. When do you expect it will be approved and what country would one go to then to have the test performed ? Perhaps Germany?
I agree the part that the USA is playing in the research is very confusing .I’d love to learn more about it.It sounds like there might have been poor results with the original “Combidex” product here in the USA. But that’s just a guess.I am going to try looking it up some more but I couldn’t find much yesterday on the USA just like you had initially stated.
Please keep us posted on when it’s approved in Europe.It’s definitely a test that could help my son if his PSA goes up … the last and his only PSMA pet scan show no further spread beyond the lymph nodes that were affected before IMRT and his PSA is very low, but that could all change.I would love to have that test available to everybody in the USA too.
If you look up Combidex on Drugs.com there is information on it dating back to 2005. It appears to have been discontinued or dropped. Not sure why because I haven’t read it yet.
I think this will link you to the Combidex 2005 information on Drugs.com:
I don’t see any information where it was ever reopened…not sure why especially if there are ongoing trials in Europe. I am not sure why either you were turned down if you could provide proof that it was being successfully researched in Europe too.
ND1988 post is about negative PSMA with rising PSA - seems our chat is reasonably still on topic but maybe a new conversation -
Combidex, the original name of the Ferrotran nanoparticle MRI, had its beginnings in the US. As previously mentioned, I am engaged in research thinking this might make a story, maybe a book.
After Combidex was 'closed down' in US Professor Jelle Berentsz and Radboud University Nijmegen, Netherlands began new research and trials with Combidex. I was accepted into the Ferrotran nanoparticle MRI imaging trial at Radboud University in January 2018, and also had a GA 68 PSMA PET (which I could not get in the US). Again, January 2018.
Thomas Hambrock's book 'The Value of 3 Tesla Magnetic Resonance Imaging for the Detection and Aggressiveness Assessment of Prostate Cancer", published in 2012, sites Radboud University as the research facility. I learned of mpMRI in December 2014 from a Urologist in London, England, where I was living. The mpMRI was integral to my primary diagnosis and treatment decision. No doc in US had mentioned this imaging to me. IMO mpMRIs should be standard before a prostate biopsy.
I learned first hand actual metastasis is present and growing below uPSA leaves of 0.10, and may well not be found by available imaging in the US, including any of the current PSMA contrast agents. IMO the US is well behind in prostate cancer imaging and I have second options of my imaging findings done in England.
My son had his RP and 3 months later his PSA had already risen to 20. He had to be quite assertive even then to obtain a PSMA Pet Scan. He had already had a biopsy. The PSMA pet showed tertiary 5 in some pelvic lymph nodes. He was already on Lupron prednisone and generic Zytiga. After the PSMA pet scan they scheduled him for five weeks of IMRT. Since then his PSA has been <.10. But you are entirely right that there is a very good chance that there are smaller cancers that weren’t detected by the PSMA pet scan. It certainly would be great to have the Ferrotrans scan available!
If my son’s PSA starts to climb with nothing showing on a PSMA pet scan then the Ferrotrans scan they’re working on in Europe could be very useful to him and to others in the same situation. That’s why I was trying to find out what country it will be available in once it’s approved .
I do wonder why Combidex/Ferrotrans was disregarded in 2005 in the USA. The link I sent you showed that the FDA was leaning towards it in 2005, but then it was suddenly dropped..🤷🏻♀️.No apparent reason given!
Since the Ferrotrans scan won’t be available through American research, I would just like to have the name of a country to go to when it is approved. From what I’ve read it looks like that might be Germany or maybe the Netherlands. What do you think?
You can make an inquiry on the SPL Medical website - an easy search. I was recently told Germany is likely the first country for general availability.
Yes, I was very fortunate, as I was to have European guidance during my initial diagnosis and also for the salvage pelvic lymph node surgery using the frozen section pathology method I had done in Belgium.
As mentioned, I have and continue to attempt research on the Combidex story - (it is best I do not share my tinfoil hat theory
Thank you so much for all the information you have given me. I do appreciate it and best of luck to you too too. We all need it fighting this terrible PC.
My father always had very less psa(<1.5) and it shows up on scan. dr. 2 option getting hormone treatment atleast and do another scan few months down the line instead of waiting for 4. Scans helped get radiation, chemo treatments on time for him, he was already metastatic on diagnosis and since then have had multiple remission and relapses.
Thanks so much for sending on the information! I really appreciate it! Please keep me in the loop. It sounds like such a great test! Do hope it’s available soon!
PS I passed along the information and he was really excited too.I hope it’s approved sooner rather than later and that Americans are eligible from what I’ve read in Germany. Americans pay the same price as Germans. It would probably be quite expensive because it’s brand new but very worthwhile.
What link did you use to get in touch with him? I miss read what was written and I thought the study was only for “naive patients “ . I think it would be good for my son to contact him too. I am impressed with a nice letter. He wrote back to you and I hope that you get in.
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