I am 71 years old and have been fighting prostate cancer for 20 years.
Last year I prayed to get on the Lu177 +PSMA617 study. I finally made it in February of 2019. I had very little side effects from it, a small amount of tiredness but nothing else. After the first injection I was very hopeful my PSA dropped to 35 from 70. The next injection the PSA raised to 64 and I had a bone and CT scan which both showed the mets were stable. Injection number 3 PSA 76 all other blood work looked good. Injection 4 PSA 97 all other blood work looked good.
Went back for injection number 5, had the CT scan and bone scan. Bad news the bone mets had increased about 300%. Had marks on both legs, both arms, all the spine, both shoulders, both hips and five marks on my skull.
They removed me from the trial and now I am starting X0figo to stop the bone mets.
Lutetium 177 is not a magic bullet for everyone.
I have tried almost every FDA approved and a few unapproved treatments. Anything new down line?
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k0brd
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So sorry to hear you went through all these treatments and bravo to you for this. I am sure there are other fine gents on this forum who will have suggestions for you.
I guess you are no longer interested in PSMA therapy. But Actinium 225 works better than Lu177 for bone mets. Has more side effects too. Here is a trial with this drug:
Sure, MM-310, a liposomal docetaxol in Phase 1, bempedoic acid, an ACLY pathway blocker--approved for lipid lowering----Phase 3, ARV-110--a Phase 1 AR degrader, you could try the drugs in Checkmate 650 trial--nivolumab and ipilimumab, there is iraconazole and hydroxychloroquine in phase 2 in Australia, RRX-001-a radiation and chemo sensitizer in Phase 3, several nanoparticle trials.......There's something new....and I could list more....but gotta take the wife for dinner....that should give you a start....hoping you find something that will work for you....fight on, brother...
There is bound to be something....of course I must ask, have you done BAT?? Sometimes a successful BAT treatment will resensitize people to previous treatments...
Not sure if you could do darolutamide off label--it's new.... decitabine for neuroendocrine is also approved ....Good luck....
OK....so MM-310 and ARV-110 are both there... lots of clinical trials there...why not do some research and get with your MO and good luck in your choice... hope it goes well and you are successful...
Sorry to hear this. Looks like the bone mets do not express PSMA otherwise you would have felt side effects in the blood as the bone marrow would have gotten some radiation as well. Before you entered the treatment was a PSMA scam with a PET tracer made? Like Ga68-PMSA? If all mets would have been lighting up the therapy should have worked. On another note PSMA is a protein in the membrane of certain cancer cells and blood vessels around the Tumors. PSA is a prostate cancer specific protein which is shedding and can be detected in the blood. PSMA is different from PSA
Yes I went to Huston for the PSMA scan. Lite up like a Christmas tree. I have all my scans from November until two weeks ago, even the ones from Huston. My doctor would not look at the ones from Huston because that may change the way they treated me. Which would disqualify me from the Phase Three Trial.
Have the same problem here with my uncle. The traditional oncologist from a small hospital doesn’t believe in the power of imaging and I feel he doesn’t want that he goes to a university hospital or a specialised clinic. More like trying to keep it in-house......I am a scientist working since 25 years with imaging in the preclinical world as such it is easy for me to interprets the latest papers. But who am I to try to share knowledge with a physician.
If you are here for your uncle would please give as some info about him (if not for your uncle then for you if possible)?
Age? Scores PSA/Gleason? Location? Type of treatment? Treatment center? Doctor(s) name(s). All info is voluntary but it helps us help your uncle (or you) and it helps us too. Since you are a scientist with imaging experience you would be a great resource to this forum if you choose to participate. If you respond with "the info" requested above, please respond in a future post (not today and not to me). Thank you.
I am in the battle almost 18 years and I can relate to your story. I am Gleason 8, started with surgery resulting in a zero PSA, and kept knocking it down after that with every treatment I could find. Feel like I am running out of ideas.
8 months ago, PSA ran amuck doubling every 3 weeks with new mets popping up and new pelvic pain. Prayed to get LU177 and got in just as PSA started going up like crazy. That was 6 months ago when I started treatment. Got a decent PSA cut to half, a little pain relief, but my recent PSA before infusion 4 started curving up a little. LU177 gave me good control per scans and good PSA control, but I think they will stop this after infusion 5. I am already thinking about what other treatments I should try.
Chemo will still work for me if they can figure out how to manage the nephropathy on the feet. I can still do a little more radiation of problem spots. Bag of tricks is not completely empty, but getting there.
You can try to treat with the same protein replacing the LU with AC(actinium ...forgot the atomic number). Need to protect the kidneys with pretreatment and the salivary glands with pretreatment (Botox injection seem to help others use cooling them down). Google a presentation from Professor Baum from Bad Berka. It’s on the website from Bad Berka Zentralklinik and also on YouTube in English.
Actinium-225 is the name. UCLA main clinical trial doctor suggested I look at that in Germany if I get a good response from LU177. Will see after infusion 5 if I still have good control if it is worth spending 100 grand to take a long expensive vacation in Germany for Actinium-225. Thanks for the comment.
Bathe your feet in milk? I am trying for the life of me to figure out if that was a joke or not. Was that whole milk or 2%? I have been taking 3 300mg of Gabapentin a day for foot neuropathy and does not seem to help at all. I have considered cutting them off on several occasions. I just got a text message re: kindergarten graduation party. I think I shall go rummage in my garage. I know I have a Skil Saw in there somewhere.
First of all the instructions for the milk was for pasteurized, I said no way I'll have it only up to my tits.
I take 600 mg twice a day (AM and PM) and it works... Ask your doc if you should increase the dosage? (You take a total of 900 mg whereas I take 1,200 mg).
Save the Skil Saw for cutting off your feet.... (I know the feeling).
They took me off the day of my 5th treatment of Lu177 + PMSA617, I did not get the infusion. BTW Gleason 8 - Stage 4. Very bad pain in hips, shoulders and legs. About ready to make a trip to Colorado
Interested to know what tricks the doctors pulled out of hat to get you to survive 20 years so far on a gleason 8. That is amazing.
My husband has gone through two separate courses of Docetaxel. He faithfully iced his feet and hands - no neuropathy. It's worth trying if you can stand it, to keep from getting the neuropathy, as long as it's cleared by your Physician.
Buckets of ice with socks on his feet and washclothes between the ice and his hands. He'd ice during the entire chemo infusion except for short breaks when he couldn't stand the cold any longer, but got right back to it before his hands or feet warmed up. He also used ice chips in his mouth to decrease any taste bud issues.
We brought cheap dishpans with us. The clinic provided linens and ice. (He's pleased since he plays bass guitar.)
Well I’m in year 14, year 7 of stage four. I’m doing xofigo right now. My PSA shot up to 72 and after 4 treatments its 52. My latest scans show healing. I have two treatments to go. I have been fatigued and had some indigestion and bowl issues but over all feel pretty good. I’m waiting to get LU177 myself. As you know you just don’t know what’s going to work. I also have tried just about every FDA approved treatment. I don’t know of anything new. My doctor said there might be some new immunology coming. As he stated we need to stay alive long enough for the right treatment to come up.
Don't be shy. Pain sucks! If you are in pain, tell them! Insist on getting something to palliate your pain. If you may cycle on-and-off a pain med between the Xofigo treatments, that might turn out to be all you need to get through the treatments. Meanwhile, watch those blood test results like a hawk.
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