I received my second LU 177 injection 2 days ago and feeling great so, far after having significant fatigue the first round. I will not have another PSA test for several weeks but will do scans in 2 weeks.
I hope this trial allows for fast tracking of this treatment.
What do you mean by "fast tracking"?
The FDA has the ability to fast track drugs that are showing significant QOL improvements for patients that have limited other options. This can help drugs shave 2-3 years off the approval process.
Since phase 1&2 trials showed significant improvement as well as use in Germany and Australia I hope if the phase 3 trial is successful they’ll fast track
The FDA is not allowed to use results of Phase 1&2 trials for approval. They have to wait until Phase 3 is completed. AFTER they have Phase 3 results, the FDA can decide if they will fast track approval. They fast-tracked Erleada and Xtandi for non-metastatic CRPC this year, so there's every reason to believe that the same will happen. Even with fast-tracking, Lu-177-PSMA-617 approval probably will not be earlier than 2021.
Tall Allen,
Thanks for your response and you and I basically said the same thing.
2-3 years is better than 6-8
Thanks for the update Jack. There are a lot of men in this group who are interested in this new therapy and reports from people like you who are getting it have a significant influence in their thinking about what to do.
Please do keep us informed as you get more info, and best of luck with the treatment.
Alan
I had my first Lu177 11 days ago and I had almost no side effects. I have not had to take predisolone although doc said I would need it if bone pain for many mets went high, but so far only very slight bone aches, no more than I have had for everyday life. I was not tired, and cycled at least 15km on each day after infusion.
I did have some nausea, but that seemed to be due to not taking pantaprazole for reflux because of IMRT I had to 2 upper lymph nodes in 2016. Side effects were disturbed lower oesohpagus. No nausea now. I had slight soreness in band of skin about 25mm wide around and under each ear. No dry mouth, well, not yet. But I'd had my last chemo shot 1 month before Lu177, so chemo effects of neuropathy were still present, and I had a few days of swollen lower legs, so I wore tight stockings which seemed to work and last Sunday I scored an average speed on bike of 23kph for a 60km ride so there ain't much wrong with me now except for being riddled with bone cancer.
I'll know if Psa is on way down in about 3 weeks when I talk with a doc before No 2 Lu177.
There may be no benefits to have less time between Lu177 infusions, apart from having to have one's life disturbed each 6 to 8 weeks over say 30 weeks, rather than having it disturbed a lot more often over say 15 weeks.
I don't care if its fast or slow; if it kills Pca cells in bones et all, I'll be happy because I'll get more Time On Earth; that's all we can expect, because a cure and remission seems so unlikely.
Ah, I see Lu177 won't be approved by FDA in US before 2021, so many might suffer badly but here in Australia its not approved officially but its been provided here by Theranostics Australia since about April 2016, and the doc running the business has done hundreds of men. But there's no medicare cover, so its aud $9,600 for each infusion, and you can't get it if you can't pay so if you have no money you die earlier. But anyone who owns a house could probably get a reverse mortgage loan for the medicals. Interest rate is high, but if a house is worth average in Oz at say $500,000, then 40,000 is an affordable price for maybe a good number of more years.
And even with remission after bones have had cancer, what then? the bones remain weakened because they repair so slowly.
I might need radium223 if my Pca in bones does not show a decline. It ain't over yet. 6 infusions cost $68,000. I might buy some if I have to.
Patrick Turner.
Patrick,
Thanks for your note and great your side effects have been minmal. I know my first shot put me down for a good week with bad fatigue. I’m still walking every day several miles and it’s more work now that there is snow on the ground. This second shot no real side effects.
I go for scans in another week so it’ll be interesting to see if Mets are shrinking. I worry about the weak bones and slipping on ice. I was fortunate to get I. The trial otherwise my wife and I were ready to go down under. I’ve always told here it would be a great place to live! I was fortunate to visit a number of times during my work career. Friendliest people in the world was my experience.
Jack
Have you had your scans yet, if so what were the results?
I am hoping amazing!
Rachael
I will have my scans this Friday which will be 8 weeks after my first injection. With my PSA being reduced from 110 to 37 after the first injection and two weeks into the second injection I’m hoping the scan show I’m no longer the Rockefeller center Christmas tree. It might be a little soon for the scans to show too much resolution of the bone mets but I’m guessing they will show improvement. I will keep you posted on how they come out.
So far this treatment has been a miracle for me.
Rachael,
I did finally have my scans and they still show I’m lit up like a Christmas tree but that was expected as it will take some time for the bones to recover. I know the treatment is working from my PSA being lower just need the scans to catch up.
Have you been able to get your father in the LU 177 trial? If not get him to Germany or Australia for this treatment if possible. I’ve been seeing and increase in people responding that they have been or are going to Germany.
Hi Jack,
I’m sorry your scans did not show a response to match your PSA decline. I can only imagine how discouraging that is. But I am happy to hear you are staying positive and hopeful that it’s only a matter of time until the scans catch up. Do the doc’s at Mayo feel the same way? Are they saying whether or not they feel positive that with your PSA decline it’s just a matter of time until your scans show a decline in tumor burden?
My father met with his new clinical trial doctor this past Thurs. Both of my parents liked him a lot. The doc was confident that my dad’s PSMA scan would be positive and that he would get into the trial. So much so that he already scheduled him for his first treatment next Thurs. My father is in Houston today getting his PSMA scan and should have the results by Fri. We are all trying to stay positive, it’s all we can do at this point. And thankfully the doctor did give my dad meds for his pain and nausea, they are helping a little. I will keep you posted but will try to convince my dad to seek treatment in Germany if he cannot get into the trial.
I happened to be looking at an article about some Phase 2 results from the VISION trial, it was about how after I believe 3mths eight men were rescanned and the amazing results they showed. Maybe it takes two treatments and closer to that 12 week mark to show the best results? You have had a huge PSA decrease so all leads one to believe it’s just a matter of time until the scans show the same!
Rachael
While I was hoping to see progress on the scans the research had told me the first ones may actually look worse as the cancer is being attacked. I know with the PSA reduction future scans will be more positive.
Hi there Jackpine ! Was just reading your posts from a month ago. Have you had another LU-177 yet and any further results ?
Ldb01,
I did receive my third injection on dec 21st and also had a PET scan. My blood work showed I went for a PSA of 110 to1.0 after 11 weeks and two injections. My PET scan showed no new metastasis and almost complete resolution of my existing bone Mets.
The result has been nothing short of amazing for me and I know my OC and study coordinator were very happy.
Are you in a study? Or looking at a study ?
Wow That is absolutely amazing news !!!! We contacted Mayo Clinic who responded very quickly and now we have an appointment with the Professor of Nuclear Medicine in South Africa for next week. They offer Lu-177 as well as ACT 225 which is a more affordable option in SA. Apparently it is aimed directly at Bone mets. (May have not indicated costs as yet). We are still waiting to do first PSA test after having started Zytiga two weeks ago.
That’s fantastic! I will say a pray for continued success. Please keep me updated and I will let you know once we get today’s results.
LU- 177 Side Effects Please
Reintroducing Lu-177
Lu-177
LU-177
LU 177
