Further news of Lu-177
Yes, I have been discussing this treatment option with my father in Australia vs Germany. He has failed all standard treatments here, we will found out on Thursday if Zytiga (after chemo ) is working. If not, then I think this is the treatment we are hoping will work to at least give us more years..
Heidelberg, definitely. They are at the forefront of using new ligands, new radioisotopes, and have done a lot of work on dosing.
Dear Hubby is being treated at MD Anderson.
Local Doc recommends Lu 177 treatment with a doctor at Charité Hospital, Berlin. (CHarité doesn't show up anywhere as being "the place to go" for Lu 177.)
When patients are treated in Germany, is the interaction with US doctors seamless?
Is US doc expected to handle daily care/ treatment/ side effects? No one talks about the process beyond getting to Germany the first time.
If cost is $20k for first treatment, plus travel and incidentals, total out of pocket treatment probably exceeds $100k.
Why not try for the Nebraska study, or the one at Weill Cornell?
In Houston Texas
This treatment looks like all the others in that some men will benefit hugely, some not at all, and most somewhere in between. However a key difference is that the set of men who benefit would not seem to be related to how well they did on other treatments. If a guy lost the chemo and ADT lotteries, it's still possible he could win big in the LuPSMA lottery.
Have a look at the "before and after" scans in jlcwonderboy's link (3rd image down on the page.) The scans show tumors in red with PSA numbers at the bottom. It looks like the guys in this set of six scans were all big winners.
I did see before and after and I’m sure the chose the images that showed the most changes. There are many trials here in the US and yes they are available but show only some halt on cancer growth for maybe 4+ months. With the LuPSMA it seems that most that have discussed their treatments online here and other sites. They had a slowing of progression 8+ months if it was successful. I would like to know anyone that has tried this treatment and it failed. What is their history?
We have tried all standard treatments and all we get is bad news l... my fathers PSA has been skyrocketing by the day. He held stable 18-20’s when on chemo, and has never decreased. Once he stopped chemo in 1 month it went from 23 to 80 and 2 weeks later 80 to 98.. I am praying that the Zytiga will show some decrease at least buy is a few months to research which option is the next best step..
Here at UCLA they have the same treatment, and it’s around the same cost. They only do a maximum of 2 treatments. Soon they will have a trial starting they are awaiting IRB. The patients will be randomized for the study either standard of care or the actual treatment. This is the most I know about LuPSMA here in the US.
I would love to hear experiences from anyone here if they have failed or how long between treatments.
I believe there’s a trial at Cornell as well.
Are the current trials here in the US the same as the treatment in Germany? I've been waiting for Endocyte's announcement for their US trials. They reported their earnings today. Their conference call should be available to the public and interesting to listen to:
fwiw, another one to watch with their PSMA imaging agent. It looks like they may have something to detect small molecule???
Hi Allen: Docrok here. Would U write me, or post general comments if not, on the pros and cons of the Lu177 treatments? U mention some do, some don't and the rest are in-between with this newer treatmenthoice. My PSA now 65, rising quickly, no ADT yet and no Chemo after 18 yrs of living with PC. I am wondering if any study/treatment center, will offer this treatment to me w/o first going through ADT? No chemo either. I completed the Ga-68 PSMA Pet/Mri this past November 14, 2018. Numerous PC in lymphatic system; in groin, a small bunch in lower chest area, and a few spots in left shoulder area. It seems Germany or Australia are the basic choices of where to go. Most want U to have had chemo or ADT. I have not had either of those, and feel I could/would/should be treated for my stage of Cancer as is. Please advise, comment and offer any assistance. I am a regular member and have donated to Malecare, FYI. TX much doc rok. aka Steve Roecklein firstname.lastname@example.org. I look forward to your response and assistance.
Hello Steve / docrock,
I've thought about your questions for a while and tried to think of good answers, but the truth is that I don't know enough to advise you on this. Not only that, but I don't even know if anyone knows enough to give you a definitive answer. The only use of Lu-177 treatment that I've heard of is on men who have already failed the older treatments - ADT and maybe chemo. The people who did your PET scan may have good answers to your question, but it's also possible that they too just feel that they don't have enough data to say whether Lu-177 is a good treatment without going through ADT, and possibly chemo, beforehand.
Right now, if your PSA is rising quickly, I think it's a good idea to start ADT right away. There's no benefit to letting the cancer keep growing and spreading. ADT can be started in one or two visits to pretty much any doctor who treats prostate cancer anywhere in any country. No special expertise is required if he has a nurse who knows how to do the injection. It will probably halt and reverse your disease progression and give you more time to research what to do next.
ADT is really not a terrible treatment. It will likely kill your libido so that, if you still have an active sex life, you'll have to work a lot harder to maintain it, but it is possible. There are other side effects too but lots of exercise can control them. It likely WILL stop your disease progression. A three month injection of Lupron or similar drug (usually preceded by one or two weeks of Casodex pills) will give you three months to try to get answers to your questions before you have to decide whether to get another injection.
It sounds like your cancer was not highly aggressive. If you've been on active surveillance for 18 years then it sounds like your cancer has been indolent until now. ADT may be all you need and chemo may not be beneficial for you and therefore not necessary or desirable to get.
If the doctors are recommending ADT, I think if I were you I'd try it. If worst comes to worst and you just can't stand it, then you only need to put up with it for a few months. It's not like you need to get your testicles amputated. The drug will wear off. Then you can try a different form of ADT or something else, maybe even Lu-177. However I don't think ADT is that bad. Lots of men live with it for years, some for decades, and have happy lives.
I know I haven't answered your Lu-177 question but I hope what I've said is useful.
Best of luck.Alan
By the way, I've read some claims that men who have gone through extensive ADT may produce more PSMA than before, thus making their Lu-177 treatment more effective if and when they get it. That sounds like a win for ADT.
Steve / docrock
There's a very useful report by Joel Nowack on "Clinical Experience of 100 Consecutive Men Treated with Lu-177". It looks like, on average, the treatment may be less effective for new patients (i.e., no previous treatment) than ADT. See: Clinical Experience of 100 Consecutive Men Treated with Lu-177 I'm not sure it shows that because all of the 100 men had heavy previous treatment, so we don't know what men who have not been treated before will do. Still, nothing in the report makes me think that you should start with start Lu-177 rather than with ADT
I'll make a posting on this for the whole group.
TX Alan for your response. A lot to think about. I will keep up the "good fight" and stay in touch. Much appreciated your time to respond. Doc rok
Thanks Wonderboy. Anything that gives me hope for so many of our brothers gives me a fantastic early morning lift.
The crooks at the FDA stated they have resolved the long lead times to bring a new treatment to the market. Then how come LU-177 PSMA is not available in the U.S. Why should PCa patients have to go to Germany...if the treatment is good enough for the Germans it is good enough for us...this is BS
It looks good to me, with the exception of the dose limiting toxicity at the salivary glands. There is also a 225Actinium payload that gives off alpha radiation, so that seems potentially better.
of PCa patients. Despite all this my day to day health and mobility are at the moment not too bad.. continual...
results of my first treatment of LU-177 & i never thought i would be so happy for a change in this journey...
Start a Community