(I am pretty new to this site - or at least reading it and contributing, so if I break protocol, don't inject me with testosterone...) I have had a wild ride the last couple of years, especially this last year. I would be more than happy to share my experience as I think it may help some of those out there who faced/face what I face/faced. PC sucks. Got mine at 54 and got rid of it with a rad prostatectomy, came back with "biochemical recurrence" at 56, was pretty stable until it metastasized within the past year or so (bones and tissue - now 62). PRRT killed it all in my tissue (or at least it doesn't show up on PSMA PET/CT using Ga-68) and worked to a limited amount on my bones. None of this stuff is available in the U.S. so I have spent a good portion of any cash I had for retirement on paying out of pocket for travel and treatment. Willing to say much more if anyone is interested.
Peptide Receptor Radionuclide Therapy... - Advanced Prostate...
Peptide Receptor Radionuclide Therapy (PRRT)
Happy Christmas Foster. Welcome to this enlightening site. I have been learning from it since Oct 2015 and am sure I will continue to learn and at times contribute something nearly sensible. Go for it. We all have something in common and it helps to get thoughts about PCa out of our systems even if if we find it harder to get the PCa itself out of our physical system. David
did you use imaging to locate the mets, and then decide on how to treat the various sites? Did the imaging location do some of the treatment as well? Where did you go
Yes. I used the GA-68 PSMA / F-18 Choline PET/CT scan to pinpoint where my mets were in both my tissue and bones. I am not under the impression that this test, not available in the U.S. but is available throughout Europe and much of the rest of the world. The history of this is that I used what I thought was the most up to date targeting at Mayo Clinic (a Choline 11 PET/CT - at the time I was unaware of the PSMA PET/CT) but they were for the most part unsuccessful at targeting where it was early on and when I did a second Choline 11 PET/CT test at Mayo a year or so later, it was equally imprecise. At that time, I was fairly stable with a PSA that was hanging out from .07 to 7.0 over the course of several years. I was hoping to use some precise beam radiation (Mayo suggested Stereotactic Beam Radiation) But once I had my PSA start to spike and spike quickly, my doctor in NYC suggested I get the Galium 68 PSMA / F-18 Choline PET/CT overseas as it was far more precise (I would have had it done there earlier if I had known...). By the time I had this scan, it showed my PC was in my nodes, what was at one time my prostate bed, my illiac, etc. basically it was inhabiting a lot of tissue based sites and quite a few bone based sites (spine, neck, ribs, scapula). There was/is a lot of confidence that this test really does show where your PC mets are, so at least you know what you have to or can do with it what you will.
Anyway, the doctor who did the Ga-68 PSMA / F-18 Choline PET/CT told me I should check out PRRT as it seemed like potentially very promising therapy for me. I honestly can't tell you why the nuclear med doc told me this, as I really didn't ask but I knew my PC was now very systemic and stereotactic beam radiation that Mayo was suggesting was out of the question. The Nuclear Med Doc who did the GA-68 PSMA / F-18 Choline told me to look up Richard Baum in Bad Berka Germany - if you look up his name and PRRT he is all over the internet and on clinical papers, conferences, etc.. His office was a cluster f**k and had me send everything to them but did absolutely nothing with it. His assistant was pregnant and showing up rarely and getting nothing done, actually was rather curt if not rude on several occasions when i was trying to follow up. I don't have a lot of good stuff to say about how the clinic is run but it/Dr. Baum does seem to be a leader in the field. Once I got Dr. Baum on the phone, he was very gracious and helpful - more on that later.
So they (Bad Berka) was taking forever and I reached out to the Nuclear Med Doc and asked if she had any other recommendations and she sent me to Dr. Peter Bartenstein in Munich. The protocol is the same throughout Germany so I was happy to go there and they were happy to have me. Keep in mind that to get this treatment in Germany you have to have already become castrate resistant to androgen deprivation therapy and failed on chemo. I didn't fit the protocol as I was not castrate resistant, nor had I failed on chemo, so I essentially became their lab rat. Everything I had read implied that earlier was better and it was more effective in tissue based cancer ASSUMING YOUR PEPTIDES ARE RECEPTIVE and not all PC patients peptides are. I should note here that it is known that PRRT only works on Neuroendocrine cancers. They have been treating other neuroendocrine cancers for some time, it just recently (past two years) started to be used with PSMA / prostate cancer. Munich had just begun this PRRT treatment for PC (I was the 18th patient) and I was the earliest case with regard to disease progression (ie not castrate resistant to ADT nor failed on chemo), but everything I read and all the lectures I heard on line told me or at least implied that the earlier you undergo this PRRT most likely the more effective it will be. And, I had this Nuclear Med Doc who really thought I should give it a shot.
So first you sign your life away so they are in no way responsible (kidney function, parotid glands [salivary] and leukemia are the most notable potential side effects) and then they make sure your renal system, white blood count, etc. can handle it. The German protocol is 4 treatments but I think they have done as many as 8 or 11 on one patient (I can't really remember how many they said or if they said 8 on one visit and 11 on another). You have to remember, the patients they have that are doing this many treatments are out of options. Another thing to note is that each patient who has gone into full remission has lost their salivary gland function and tear duct function.
What happens is they inject Leutitium 177 into your arm, it travels throughout your body and only binds to the peptides in the prostate cancer cells and washes out everywhere else. Which is why your kidneys are susceptible to damage cuz it all washes out through the kidneys. With the salivary glands, the only way to get it out of there is more difficult. I chewed a lot of gum. The first two days you are in isolation (there is actually lead in between the sheet rock - yup, a lead lined room). For the first 48 hours, excepting when they bring in a tray of food, change your IV (saline), give you a shot of anticoagulant, take your blood pressure, give you anti-nausea pills and steroids, etc., you are pretty much left alone and not allowed out of the room, nor allowed visitors. They take pictures of you, your glands and kidney function each day (morning) and then, aside from the IV bags (2 a day), blood pressure tests, blood draws, and delivery of food trays, and a nurse checking in on you now and again, you are reading or watching movies you have downloaded on your computer for this rather boring 4 days.
So, your first visit, you meet with the doctors so they can go over what is about to happen and they can get informed consent. They are also to give you a Ga 68 PSMA PET/CT scan (the same one had done earlier at another hospital but the one I had done earlier was already 4 months old. They also check your blood and take pictures of you to ensure you are an appropriate candidate for the treatment. That is done Friday. Monday you do the paperwork and get into your room by noonish and they infuse you with the Leutitium 177 early afternoon and you wait until the next morning for your first scans to see where there is uptake and have a baseline. each morning thereafter they take more scans and pictures and you are out of their Thursday afternoon. For subsequent treatments, you eliminate the Friday and just come in Monday morning as you have already had your consult with the physicians and you have had your first PSMA PET/CT.
My story was that I was immediately receptive to the therapy and they could see that the PRRT using Leutitiaum 177 was binding to my peptides and everyone was very happy. but by this time my PSA doubling time as 6 or 8 weeks (59 when I came back from Germany) so my doc here immediately put me on Firmagon. Because we added Firmagon at essentially the same time I did the PRRT its hard to totally attribute my PSA drop to one or the other but it did drop and it dropped fast. In one week it dropped from 60 to 30, eight days after that it was down to 5.2, a month after that it was down to 0.42, Throughout the rest of my treatments it has stayed between 0.18 and 0.12. Between the second and third treatment I went to the original nuclear med doc who sent me to Germany and she confirmed that I was really responding well. No additional cancer sites, some had shrunk, and some had stayed the same but essentially I was doing very well. After my third treatment my numbers started to go just out of the normal range, nothing that would disallow a fourth treatment but my tongue started to get a bit dry, so my doc here in the states said we should seriously reconsider a fourth treatment. So I went to the original nuclear medicine doc who told me to go to Germany and had another PSMA PET/CT with the Lu-177 and the F-18 choline. That doc said even if I could get another PRRT treatment she would not recommend it at this time as ALL the tissue based cancer seemed to have resolved itself/disappeared and all the bone wee responding and there were no new spots of cancer.
I wanted to immediately go out and get proton beam (pencil) therapy for the bones but my doc here said the PRRT is still working and I should wait a bit so it can fully take its course. I honestly don't know what he is going to recommend but I know what I am recommending and thus far I feel like he has been (and is) a good coach but I have been quarterbacking this game. He is very happy thus far with my results and very impressed that I found all this stuff to do (he admitted to knowing nothing about PRRT when I first handed him an inch thick stack of clinicals paper clipped, underlined and highlighted but has since been paying a lot more attention to what I am doing. You have to understand, he was very uncomfortable commenting on any aspect of this as it was way out of U.S. protocols and even out of German protocols, and also, if he encouraged it, it could in some way be construed as he was liable if things went bad. I chose to make myself a lab rat due to papers and lectures I read when he knew little about it. That said, he told me on my last visit to him last week "you did something really bold, and it worked. I love bold." Thus far I have been right but who knows, maybe my PC will come back into my tissues, maybe I will develop some other disease from the treatment, maybe I will simply kill all the cancer within me. I am a lab rat who opened his own cage and walked right in but regardless, I feel I have bought myself years and hope to buy some more when I get it out of my bones.
If you have any questions or I have been unclear, let me know.
Sorry, forgot to answer if the PSMA test actually has a treatment aspect to it. I am not sure, but my impression is a fairly confident no.
Thank you. very detailed. I am not at home, so will wait till I get back to really resppond. There is a lot here, and very new (out of the ordinary).
That's a remarkably detailed and informative report!
Thanks for all the info.
Alan
Bold is right. You are doing your part to advance the treatment of prostate cancer. I hope all goes well. You also had to reach into your own pocket to finance this. I did that for HIFU. I didn't have to leave the country (went to CA) but Medicare is dragging their feet on coding this up and FDA approved it only for "prostate ablation". Isn't that really the same as what radiation does? Good luck and Happy New Year.
PLEASE NOTE: At the end of paragraph 7, I stated "So I went to the original nuclear medicine doc who told me to go to Germany and had another PSMA PET/CT with the Lu-177 and the F-18 choline." This should have been stated as ...and had another PSMA PET/CT with Ga 60 and the F-18 Choline.
Sorry if this confused anyone but I just noticed it in rereading what I had written.
PRRT is primarily for the small-cell, or neuroendocrine variety. It binds to the cancer cells, and has a radioative payload. So rather than make the cancer visible, it just kills the cell. Uses beta radiation, so lower energy and wider impact (bad). One hopes they will find a sutiable alph radiation warhead (analogue to radium 223, the calcium memetic), as that should have a more confined effect.
University of Iowa is now looking at PRRT, and they seem to be the US leader.
I by chance talked to a vendor who said they had looked for an alph emitter (this is not at all a new idea or clever), but after years of trying stuff, gave up. Some University asked if they minded if they (they university) tried some more things, and the pharma said - be my guest., and best of luck.
On the other hand, I did run across something about actinium. And that someone thought that might work. One of its isotopes (which emitted alpha rays (helium++) in its decay products.)
PRRT knowledgable vendor at roswellpark.org/netmeeting
I for one am interested.
See my answer to Martingugino above.... Let me know if you have any additional questions.
Hi Foster007,
I read your article with a great deal of interest. Its a great article.
Detailed and most informative.
The one thing you did not mentioned that I am interested in - is the dose rate of your Lu177 infusions and if the dose was constant or varied.
My history is similar to yours. I have had the same (PPRT) treatment - so far I have had a total of 4 infusions of Lu177. The PSA level has dropped significantly and the results obtained thus far are very similar to your own, particularly as far as the soft tissue or visceral tumors are concerned.
The parotid or salivary glands have taken a bit of a beating but there is no such thing as a free lunch, there is a price to be paid for everything.
My bone mets are very painful - and like you I am wondering whats next in the way of treatment.
I am about to have another lot of GFR and Gallium 68 PSMA/PET scans.
Hopefully this will throw some light on the possibility of some options for Salvage therapy.
Just what will be appropriate and most effective remains to be seen.
I note that the first small trial of Actinium225 PSMA-617 have just been done.
In these trials radioactive Actinium 225 is replacing Lutetium 177.
Although this trial is in its infancy the initial results are also looking promising.
Barree
Sorry for the delayed response but getting to the paperwork during the new year was a bit difficult but the following is what I received.
May 30th received 6092 MBq
July 25 received 6050 MBq
Oct 4 received 6007 MBq
I did PSMA PET/CT after my doc here in the states was concerned with the parotid (salivary) glands as I was and still have a bit, but not much, dry tongue. Very tolerable for me. So, before I did anything more, I had another PSMA Ga-68 with the F-18. After that test was done, ALL tissue based mets were gone, bone mets had either shrunk or stabilized and no new mets had developed anywhere. The nuc med doc said that even if I had not had the impact on my salivary glands, my "tumor load" (i assume she means in the bones) was so low now that there was no reason for me to have a 4th treatment. This nuc med doc was the original doc who had me researching the PRRT and in whom I have complete trust. Aside from seeing that I live the best life possible this person has no reason to advocate for more or less treatment. I got lucky and found someone who is not only good but is not incented by profiting from treatment (unlike here in the states).
It should be noted that having quarterbacked this situation from the beginning (your doctor recommends but you decide) I immediately was researching how to get rid of the bone mets. I came to the conclusion (with recommendations of other PC sufferers and internet searches) that the best way was pencil proton beam BUT I talked to my doc (he did not take a stand for or against it, just wanted to wait until the full outcomes could be seen from the PRRT) and I emailed the nuc med doc who did my PSMA Ga 68 / F18 scan who said that my tumor load was so low I should have a good shot of living a "normal life span" and if it did start to grow there were other options to consider rather than the PRRT therapy.
Bottom line is that the PRRT therapy should probably be employed earlier in the prostate cancer treatment algorithm than later. If I had done it BEFORE it hit my bones maybe I could be saying I am cancer free today. Earlier use of this therapy may or may not happen due to lack of study money and what appears to be a lack of interest in bringing it to this country. Why have an effective treatment when you can sell more pills, scans and injections if you keep people sick? I really dislike our profit centered health care but that is really a rant for another time.
I am so very grateful for my response to this therapy and all the wonderful help I have had through discussions with other PC victims. I do hope this helps some of you out there.
How are you doing? I am looking more into this treatment for my father NEPC. Can you send over some more info about where you went for the treatment
Hey Daddysdaughter,
I just saw you reached out to me 6 months ago and I never saw it. It is by chance that I was going through old emails and saw this notification. Happy to talk if you want as I have gone through it in Germany. Make sure he drinks lots and lots of liquids, ice his parotid glands and keep him chewing gum, gum drops or anything to keep his salivary glands producing so he is keeping the radiation moving in those sights. Just dumb luck I saw this and I do hope you see my response.
Best
Foster
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