I am in a mental quandary. After reading a out xerostomia(dry mouth, often permanent), I am seriously considering cancelling the Ac225 and just going with a prostatectomy along with having more APCEDEN vaccines made. Have been stable for 2 full years confirmed by PSMA PET scans now using the vaccines of and on for over 2 years and Keytruda for a year. Also, a short Zytiga stint, and 18 months or so of Xtandi, and Xgeva. Started in August 2014 with PSA of 212, Gleason 9 so it's an aggressive SOB'ing strain. Was showing up in my spine, cheekbone, and sacrum in March, 2017. Vaccines only resolved appx 30 mets but the primary has remained
Feel really good and may be an outlier for awhile if the treatment I am on doesn't have to fight the primary anymore. And damn, just had Keytruda and found out my alk phos is up to 117 from 56 on July 25th which is the lowest it had been in some time. It always goes down after taking a vaccine which is what I am having for lunch. I think surgery followed by more vaccines etc is my best bet for now. I've had 10 surgeries in my life so what's one more.
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Fuzzman77
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If your primary tumor is in prostate If so, I'd let it go. Mine is not showing any activities, and I still entertain the idea of taking it out, but the docs don't think so. There are multiple schools of thoughts.
If all your mets have been in bone, consider Xofigo instead. It is not PSMA-based so it should not cause xerostomia. There is no reason to suppose it is less effective.
Hi Allen. How about that I have had nothing show back up in either the bones or lymph nodes for 2 years now confirmed by PSMA PET scans? To me that seems like a pretty long time and both my oncos in Delhi, my onco here and my immunologist at Baylor think it would be wise to take it out and see what the vaccines etc can do without having to fight the primary anymore? It is because they know the vaccines recognize my cancer. Nothing has shown up on the PSMA PET's for 2 years now except the primary and although the primary is still there it continues to get smaller and the SUV keeps going down. I know I'm an odd case here since most don't get true autologous vaccines using tumor tissue. My first mets were all lymph node for the first 2 1/2 years, but I think it was in my sacrum the entire time due to pain there. I have no pain at all anymore so I am in pretty good shape again.
I hear what you are saying Allan. I guess I am hoping I may get more time with control since I am on the vaccines and Keytruda. Problem is there aren't many people that have been where I am. Both my immunologists tell me I am in uncharted territory and any way I go is simply going to be an experiment. I've even considered the immunotherapy from Dr. Jason Williams where he injects it directly in the tumor. Paul Hodson(RIP) tried Gary Onik's direct into the tumor treatment and although it did not work for him he told me it put 3 of 11 in his group in remission although one that was also from Australia had a a recurrence at 18 months. They are also working on double loaded Car-T therapy that may be ready in a year or so.
1. In my opinion your recommendation seems clearly superior to all the other options presented... by a fair margin. I think Fuzzman should reconsider his decision.
2. What is the status of the new PSMA ligand treatment with less side effects? Should it ever be approved it will simplify treatment decisions involving similar fact patterns.
From what I have been told by doctors in Bombay, Ac-225 has not been very successful here in Bombay. The xerostomia problem is massive and ruins ones quality of life almost permanently. Dr. Sen also mentioned that nothing could be done about it. But, if one was desperate with pain and mets all over, then one could weigh the pros and cons and go for it. I do not think you are in that position.
Therefore, your cancelling Ac-225 would be a good decision, in my opinion.
Whatever you decide to do, I wish you only the best, Chris.
I have just received a reply from South Africa on Ac-225.
It says the following : 1) That the xerostomia effect from Ac-225 is permanent. Patients have to adapt their diet accordingly and use saliva replacement gels 2) Progression free period (average) is from 9 to 18 months 3) Their first patient had his last treatment in September, 2017 and his PSA is still less than 0.05.
Definitely seems a better bet than doing this treatment in either Bombay or Delhi.
Whether it is worth doing at all is the question. If one is not too badly off, why not wait for refinements in the combo therapy Lu-177 + Ac225 at Bad Berka, Germany under Dr. Baum ??
I already canceled the Ac225 based on information received from you and Tall_Allen. Am putting off my trip to Delhi for about 3 weeks and then will do the prostatectomy followed by more vaccines in addition to staying on Keytruda and Xtandi for one more year. I REALLY appreciate all the comments. It's a better decision I believe. I wouldn't even do the prostatectomy if I wasn't on two kinds of immunotherapy. And just got done talking to Dr. Gary Wood who gave me TVAX 23 years ago for my kidney cancer. I had a 5.1 pound tumor removed and had one marble sized bone met in my pelvic bone and had the vaccines right after surgery. This was b4 there were PET scans, not long b4 but b4 so I most likely had a bunch of micro mets like they told me back then also. I wasn't aware but I was the only patient that was treated with the vaccines immediatly following surgery while the tumor burden was at its lowest. He told me I'm the longest living patient of around 100 that they treated from various cancers and he attributes it to hitting it with the vaccines early. Seems like my friggin' whole life has been an experiment. So if you are just having surgery I have heard but am not sure that they have talked about doing Provenge right after surgery. If you don't have the funds to do what I've done maybe you could always see if Provenge is available riggt after surgery in a trial setting. Just and idea. Any thoughts from those more knowledgeable than me out there?
Short update. At least in my case having the prostate out was the right decision. I felt the best I have since dx almost immediately after having it out. On advice the oncologists and immunologists on my case I started Lupron in one month shots a couple of months ago. Had my third last week. Have done 28 months of Keytruda know, the vaccines off and on since March, 2017, and switched from Xtandi to Zytiga about a year ago. Zytiga only helped for 6 weeks initially but in combo with the vaccines worked again. Had scans last months for what I thought was a met with a PSA of .03, but it just ended up being bad sciatica. After two months of Pupron PSA is >.01 so it’s as good as it gets. My onco is concerned he’s over treating me, but he says he hates to change anything as I am doing well. So our plan is to stop everything in 44 weeks when I run out of vaccines. I just am hoping for a couple of years off treatment. I know it’s a hope and dream for many. If it comes back hopefully whatever returns will be PSMA avid so I can try Lu177 unless something better comes along and most likely start Lupron again. Strangely, it literally almost killed me when I was on it before, but has been much more tolerable this time. Onco thinks it may because I was given a six month dose before, and it was just too much for me. Who knows? I scared to death to take it again. It has now been almost 6 1/2 years since dx. I am hoping to make it until June, 2026 to see my son graduate high school. It’s what keeps me going. Happy Holiday to everyone in this crazy 2020.
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