5 years out today. Started at 212 PSA, Gleason 9 with lymph mets up to my neck. Don't give up hope. PSA is currently hovering around 2. No Lupron since January, 2016. Will be having an APCEDEN vaccine for dessert to celebrate and will be having my first Ac225 treatment on September 5th for my 60th birthday present. Hoping it may knock down the last tumor for some time.
5 years today from dx: 5 years out... - Advanced Prostate...
5 years today from dx
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Fuzzman77
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Do you still have your prostate? PSA of 2 without Lupron is awesome if so, otherwise it's just not too shabby.
I still have my prostate. No Lupron since January, 2016. I was on one month shots but couldn't tolerate the side effects which were continual renal failure. Feel very good most days, and zero to little pain for now. When it was in my bones it was pretty painful. Been clean except 4 the prostate for 2 years now, confirmed by PSMA PET scans.
Where are you getting the treatment with the vaccine APCEDEN?
Delhi, India, same as the Ac225.
Do you have many bone metastases and diffuse infiltration of the bone marrow? Ac 225, is mostly indicated in patients with multiple bone metastases and infiltration of the bone marrow. Ac 225 may have significant negative effects because it may affect the salivary glands (permanent xerostomia) which may have a significant detrimental effect in the quality of life. It could also affect the kidneys. If you do not have many bone metastases and diffuse infiltration of the bone marrow you could be treated with Lu 177 PSMA which have less negative side effects and if it affects the salivary glands it is transitory.
I believe since I had multiple bone mets is why they want to go with Ac225 just to make sure they get anything residual. Had them in the sacrum, spine, and cheekbone b4 doing APCEDEN which resolved them in 2 months. Problem is although I am stable now for 2 years I have had 34 vaccines. Zero side effects but Dr. Decker from Baylor is concerned about me developing anti-immunity from so many vaccines. I imagine there's someone who's had as many as me but they know of no one that has. Plus I had 8 TVAX vaccines 23 years ago that cured me from kidney cancer that had metastasized to the bone. Hard decisions to make for sure.
If there is not diffuse infiltration of the bone marrow right now, I would have Lu 177 PSMA treatment and see what happens. They could use Lu 177 PSMA and Ac 225 PSMA to reduce the risk of salivary glands damage.
Do you mean doing them together Tango? I had asked Dr. Ishita about that but they didn't have any experience doing them together. I'd rather do whatever has the lesser side effects, but I also want to do what has a better chance of working. I have stopped the vaccines and then stopped Xtandi also. Without being on both my PSA goes from 2 to 10 in a couple of months plus alk phos goes up also. Maybe that is why they think the Ac225 is a better option? I will ask her 8n the morning. I could opt for surgery and will if this doesn't work while I still will have a number of vaccines left. They do do Lu177 there also.
They could do it together, I think they call it "tandem" or they could do it sequentially.
m.jnm.snmjournals.org/conte...
I will show her this tomorrow. I appreciate the feedback Tango. I could just have surgery but I figure I'm already a guinea pig so definitely have been doing things outside the box.
Best of luck on this journey,
Found out why they are doing Ac225. They aren't going for control, they are going for total ablation of the last tumor to put me in remission. They said it is less likely with Lu177. They are treating me as if I have only residual disease, and feel total remission is very possible since there's only one obvious tumor left on the PSMA PET scan. Standard of care stateside almost killed me so I have to give it a shot. They know about my kidney cancer and all the times I needed IV fluids with Lupron but my creatanine is uner 1 and creatanine clearance is fine too. I actually can't wait. If nothing else I believe it will give a couple more years of good control.
I asked Dr. Ishita Sen about the combo Lu-177 and Ac-225 therapy and she told me that she has no experience in doing it.
But, she did say that Prof Baum of Bad Berka, Germany, had done some "anecdotal cases with reasonable outcomes".
Thank you for posting and sharing your story and amazing, out-of-the-box treatment approach. I searched for Dr. Decker and find that he is a PhD researcher, but it sounds like you were able to consult with him for his knowledge. How were you able to consult with him and is he open to additional consults? My husband did not tollerate ADT/zytiga well from a side-effect perspective and we are gathering info on other options, trying to stay off it as long as possible (he is off now and has been for a year. Current PSA is 0.051, he had a RP in Jan 2017, you can view my profile for more info).
Dr. Decker has what are called double loaded vaccines. They have both tumor lysate and mRNA. They are licensed through Diakonos at
dcimmunotherapy.com. Dr. Decker was a consultant on my case with APAC Biotech in India. They are in a collaboration now. Not sure exactly where they are with that but the Indian Cancer Institute is getting ready to do 120 patients with glioblastoma using the double loaded vaccines from Baylor. I believe they will be called Immunovax. Dr. Decker's info is in the public domain as he likes to say to me so it cam easily be found be Googling. If you can't find it message me and I will give it to you. He is a very smart guy. They have put metastatic pancreatic dogs and mice into remission ju se t with the vaccines. They are trying to get a trial started with that stateside but the FDA takes some time.
I can’t find which Dr Decker you’re referring to. Can you help me?
Congratulations on the great news!
Fantastic! Thanks for sharing!
Hiya.
good morning,many thank's for your information.That's very good news regarding your treatment,hope it stays under control.Have just started my treatment in July PSA was 30.Have just started a 3year estrogen based patch trial.These patches are to reduce my testosterone level and to prepare me for further treatment's to follow !!!
Am due a blood test on Tuesday to see if my PSA has reduced. Will let you know next week how thing's go.
Hope you have a great birthday and many many more in the future.
Just to let you know, am 63 and live in UK.
Regard's and best wishes Alan...
Hi well done five years ago this month i was also diagnosed PSA 22 gleason 8 aggressive now unreadable however testosterone unreadable as well problem now with the bones not complaining just thankful still here there is always hope
Congratulations Fuzzman77! and thanks for sharing. Wishing you continued good health.
Congrats on the “stability” Fuzzman! 👏👏 That’s great news, and an inspiration for the rest of us. I’m over 4 years out from Dx with most recent PSA 0.22 and T=7. My one bone met has failed to “light up” on multiple PET scans (interval resolution). No symptoms other than side effects of the ADT. Right now I’m just on Lupron. I’m heading up to the Jax Mayo in a couple of hours for an update on my labs and discussion of my status and treatment plan with my M.O. Hoping I am staying as stable as you are. Blessings and best wishes to you! Have a great day. 😎
Are u on any treatment now
Congratulations! You were on ADT for 1,5 years + vaccines. What else did you do?
Inspiring story Fuzzman, I hope your mets are annihilated by your little birthday present!
Thanks for sharing!! Congratulations
Congratulations on your results....I tried to google a price for the APCEDEN vaccine and could not find one. I guess you get it in India...Could you share what the cost is for the vaccine? Thanks....
Don Pescado
Pescado hombre, it is about 25K for 12 vaccines at Medanta Medicity under the direction of Dr. Ashok Vaid. Now it is a prescription so you can just bring it back with you. They give you the paperwork but I wasn't hassled at all. Then I keep them in the vapor of liquid nitrogen in my basement covered with styrofoam and covers. Piece of cake giving them to yourself.
Thanks for the information--good to keep in mind....Best of luck to you....
Don Pescado
From reviewing information I found, I guess 12 vaccine injections lasts about 1 year....25K is a very reasonable price for a year of life.... As I always say, if you stay inside "the box of SOC" then you are just awaiting a dance with the Grim Reaper...I think out of the box myself....It goes into my files for future treatment option...Best of luck with the AC-225 treatment.....may you escape this hell ship...
Thanks again for your response and please keep us posted...
Don Pescado
Man, you aren't kidding about this being a hellship. I don't know what the future holds like any of us, but I am so much better than b4 it's a friggin' miracle. Just ask my poor wife. Like the folks outside a sold out Grateful Dead show say, I'm looking for a miracle!
For those that asked, I am on APCEDEN vaccines, Keytruda for a little over a year now, Xtandi for about 18 months, and Xgeva from when it was in my bones. I have tried an experiment by stopping the vaccines for 2 months or the Xtandi for 2 months. Both experiments failed and my PSA shot up to 10 or better from 2 in 2 months so it's obviously still very aggressive. I know nothing works forever so that is why I am opting for the Ac225 treatment. If it puts me in remission maybe it can give some of you guys a roadmap that may help you. Who knows. They told me 23 years ago when I had metastatic kidney cancer to the bones there was no cure, but they went and cured me anyway. From my experience I just believe that some of us on here are living at a time when some of us will be put in remission. I am cautiously optimistic.
Like you...I am optimistic...I am watching several new classes of drugs under development--BRD4 inhibitors like ZEN3694 and p300 inhibitor--CCS1477...both BRD4 and p300 that drive HULLk which drives prostate cancer--other things in development also including new diagnostic scans and immunotherapy...There is hope, amigo....
Don Pescado
Not sure if you are aware of the Dukoral epidemiological study in Sweden , which showed increased OS in PCa for individuals that had the Dukoral vaccine...see below:
nature.com/articles/s41467-...
It is also shown in colorectal cancer:
ncbi.nlm.nih.gov/pubmed/289...
I postulate that the Dukoral vaccine effects the cancer mRNA--slowing progression...a half baked hypothesis based off epidemiological evidence...
Not sure if the Apceden would be a problem with Dukoral, but I will be getting the Dukoral this fall....Currently, I am getting the Shingrix--Shingles vaccine--
I do question whether attacking the PCa microbiome might not be a way to delay disease progression and enhance survival...from a post on microbiome by pjoshea13--
healthunlocked.com/advanced....
I do have other thoughts on attacking the microbiome...I may be the n=1 on the Shingrix and Dukoral, although if only slowing the mRNA signals to divide and progress, an ultrasensitive PSA may be unremarkable....ie:unchanged...
Thanks for taking the AC-225 risk and posting on what you are doing...This is part of how we will find the answer and stay alive...experimentation/science....some generated by ourselves...
Take care,
Don Pescado
Sounds pretty good Don. What kind of cost are you looking at for that vaccine and do they need tumor tissue? I've have a total of 70 biopsy cores so far with 58 being to make tje vaccines. Looking at about 20 more next week. Not fun, but it's kept me alive with a decent quality of life again so it's hard to complain. Just can't get rid of the stubborn primary. I could do surgery as I was saying with more vaccines and that may give some good years but nobody really knows. Ac225 appears to actually be putting some guys in remission. Only time will tell if they are durable remissions. This disease is a bitch.
No tumor samples...it is a vaccine for cholera....Dukoral costs about $110 here for the 2 vaccine doses--oral dosing...it is available in Canada and US....some are going with the new cholera vaccine but there is no data on that one so I pass on that one...It is also available in Sweden...where you located?? The issue is the temperature it needs to be kept at.....that is why the fall/early winter for me...needs to be kept at lower temperature.... I am getting mine mailed from Canada--no Rx necessary...
Yes, this disease is horrible and my goal is to stay several steps ahead of Hurricane APC--genetic testing--somatic and germline in 2 weeks...Shingrix to prevent Shingles...
Since you are on Zytiga, if you are on Prednisone, some have stretched out Zytiga by switching to dexamethasone at initial asymptomatic PSA progression--see below:
ncbi.nlm.nih.gov/pubmed/300...
also, adding Indomethacin when resistance occurs with Zytiga may add some time:
ncbi.nlm.nih.gov/pubmed/277...
After all, this fight is one of buying weeks and months as the science evolves... 2 new classes of drugs are coming and several other new and exciting developments...There is HOPE !!!
Don Pescado
I wonder if it is as effective as the APCEDEN autologous tumor vaccines I have been taking. Certainly MUCH less money.
Different mechanisms of action--for the Apceden, it is tumor oriented immune stimulation, and I believe the Dukoral is mRNA related tumor suppression attacking the PCa microbiome, but the mechanism of action is truly unknown...The thought being whether the Dukoral--an oral vaccine could be done in conjunction with the Apceden...since you know your PSA's, it would be interesting to see if things improved....Of course, I would get the MD that gives the Apceden the information from the epidemiological studies that I gave you and follow their advice.... Just some thoughts I have since many times, we are the n=1 on these experiments....
I wish they would follow up on the epidemiological study but that is unlikely since it is already an approved vaccine...same old stuff, different day...
Be well....
Don Pescado
No money at $110.00 per treatment. The immunologist that makes my vaccines and I have become good friends. I will ask him what are his thoughts. He just wants me to get rid of this no matter how I do it. He agrees that even though I've been very stable as far as how sick I started that I need to try to attack it from another angle since I still have the primary. Weird that I am on a first name basis with all these guys including Will Decker at Baylor. I can call them up anytime. Will is the one at Baylor that has the double loaded vaccines consisting of tumor lysate and mRNA together. I was the first human they tried it on. No side effects and kept everything in check for another 9 months or so. I am with him in that all prostate cancer patients should be getting these vaccines early on for best results. I am living proof with the TVAX vaccines from 23 years ago that were given to me as soon as I recovered from having a monster kidney tumor removed with bone mets. Cured me and never looked back. Ashame it is closed now.
If the primary tumor, I take it, is in the prostate, then why not do TOOKAD or HIFU and bypass surgery or radiation? Just a thought....
Don Pescado
Because the preliminary results with Ac225 have been so damn promising, and from starting with a PSA of 212 my gut tells me I have CTC's which hopefully the Ac225 may be able to knock out along with APCEDEN that we already know helps keep my PSA around 2 with Xtandi and Keytruda. Take the vaccines or Xtandi away and my PSA quadruples in a couple of months. Ac225 treats the entire body. It's an experiment either way for sure.
Understood.....best of luck, brother...keep me posted on what the Immunology MD says about Dukoral... I would enjoy hearing his opinion on why it works on PCa and Colorectal cancer regarding survival....
Take care,
Don Pescado
I'll ask him in the morning. He is one of if not the best immunologists in India just from all his experience and knowledge. He sure keeps up on it and reads everything. Reminds me a little bit of Tall_ Allen.
I'll look forward to hearing his take on how Dukoral work since it has shown survival benefit in colorectal and prostate cancers...an indirect effect by mRNA slowing progression makes sense, but I am not an Immunologist...intrigued to say the least... Thanks for asking him...
Don Pescado
Just read about TOOKAD. Unfortunately I am definitely high risk. Doctors tell me mine is the most aggressive early onset strain. Not sure if HIFU would get any CTC's. The vaccines in theory should. My prostate is already swiss cheese so not much worth saving there. Figure if this doesn't put me in remission I will have it removed in February and do 9 more vaccines to hopefully clear it for a couple of years. Very hard decisions for sure.
NPfisherman.
Let us know what happens after the new shingrix injections.
So I received PSA testing every two months.
The increase in my PSA had been increasing by less and less until it increased only by 0.12 per month for previous four months. And then actually decreased by 0.01.
Then I received the first Shingrix injection and my PSA at next PSA test it increased by like 0.4 and again the next PSA as well. I had PET scans at this time PSA 3.9, and we found what we were looking for. So I went on Lupron for upcoming radiation therapy so no future data on that. The Mayo nurse told me the injection had nothing to do with the increased PSA rise, and said to go ahead and get the second injection. The Dr had told me prior to all this while my PSA was decreasing it would pick back up again.
Thanks for the information. I wish you well. It helps to be reminded that there are more treatments available than "standard" offerings here in the US.
Craig
Mavarek.... (My spelling of the Hindi word).... 5 years?... Well that means you can forget your fuzz and finally grow a full beard.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 08/09/2019 1:42 PM DST
Congrats! Wonder why Apceden is not familiar to me at all. Seems to be similar to Provenge? Is it approved in U.S.? Looks like things are going very good for you. Enjoy
Sounds similar but isn't. APCEDEN is a true autologous vaccine made from your own tumor therefore it is using your antigens. Provenge just uses peptides from cancer cell lines. When I went to a seminar they had a doctor and a Provenge rep selling it hard. After basically forcing the doctor to answer me yes or no if Provenge ever can resolve bone mets he finally told me no. APCEDEN can and did resolve my bone mets. Even TVAX that I had 23 years ago is a more advanced vaccine than Provenge. Provenge is the proverbial cash cow. That's not to say it won't help some guys, especially those with minimal tumor burden. My onco doesn't offer Provenge as he told me there's too many things out there that are better now in his opinion.
Great story, rooting for you to get many more years. 🍸Cheers🤠
Hello Fuzzman77,
Another vaccine which may be of interest to you is the Dukoral chlorea vaccine. A Swedish paper found that it prolonged survival in PCa patients (ncbi.nlm.nih.gov/pubmed/299....
Have you been able to observe objective responses in PSA after taking a dose of the APCEDEN vaccine?
Cheers,
Philip
Definitely. It has kept it down in the normal range. I am familiar with the Dukoral vaccine. APCEDEN has had decent results with Pca.
Chris
Excellent. Are you willing to post the PSA trend data? How many times have you injected and seen a decline? Are the nadirs and rates of decline after each successive injection changing? How many injections does $25K buy? Has the contact info been posted, or just searching for APCEDEN sufficient? Apologies for the number of questions. What you’re doing is quite interesting.
Cheers,
Phil
Sure, I can show you. I am working a big show out in Vegas right now, but I will be back home late Friday night. You can see without it it goes right back up unfortunately. Some that have taken it that hasn't happened or has taken a lot longer. Could be the aggressiveness of mine? Zytiga quit working after about 6 weeks of being on it and my testosterone started going right back up, but not the PSA. I restarted the Zytiga with the new vaccines however after taking the first few vaccines and that is when 30 mets resolved in 2 months and it was keeping my PSA at its lowest, which was always under 1. The vaccines cleared the tumors but the combo seemed to keep it that way. I truly believe at least for me I need some type of combo for control. Maybe not everyone does. All I can say is I was on nothing but 2 vaccines when it started turning my life around. I had been off Lupron for over a year and it wasn't looking good. You can just google APCEDEN. It is also under APACBiotech.com and Medanta Medicity is where they give it now. wYou need a biopsy and a PSMA PET scan. Together that is about $1,100.00. I was doing it b4 it had been approved in several of the high end private pay hospitals in India. You can buy just 6 vaccines and I assume it is half the price. I know some have gotten great control for a couple of years just with 6. And some have had no response whatsoever.
Hello Fuzzman, I appreciate the reply. It makes sense that combination therapy would work better than mono therapy. Cancer is resourceful - it will rapidly evolve resistance when subjected to selection pressure from only one type of therapy (mono-modal). The outcomes of multimodal therapies, regardless of types, are generally better. The intermittent nature of the vaccination which is delivered when the PSA starts to rise (above a specific level determined by you) also fits in well with current through on the use of evolutionary game theory to maintain control of PCa. I can send references or you search for papers by Gatenby in Pubmed. Regards, Phil
Very interesting and encouraging stuff. Thanks for taking the time to keep us informed. This definitely goes into my folder for future treatment options.
"Big show out in Vegas" sounds intriguing. Have fun and stay well,
Josh
Good evening Fuzzman77,
I too graduated high school in 77, pretty cool.
F77, I was dx in March '19 so everything is still new to me. I had a PSA of 80 and when they did a nuclear bone scan I had hundreds of lesions, mostly in the spine, top to bottom. Also in shoulder, legs, and cranium. I went to MD Anderson and as of August '19, my PSA is 1.3.
I take Casodex 50mg p/day, Zytiga 1000mg p/day, prednisone 5mg x 2/day, Denosumab injections monthly and irreversible ADT.
My question is where can I begin my search for the international treatments that you are accessing? My Dr. at Anderson basically told me to come back in six months and that literally shocked me. I want to throw everything possible at this incredibly tough organism that has an unbelievable survival mechanism.
Like you, I am in a position where I can travel for international treatments. Please feel free to contact me anytime. I am new to this forum and I don't know how you can reach me if you decide to.
In any case, I wish you all the best and I want you to continue to fight like a real Tiger.
aif you have the primary they van biopsy it to.make the vaccines. They say the earlier the better. If you have a prostatectomy save your tumor b4 they take to path. They don't need it all anyway. In my opinion they should be saving every patient tumor as the immunologists around the world keep using tumor tissue in new experiments. Check your inbox.
Hi Chris,
All the very best for your first infusion of Ac-225 in Delhi, India. I do hope things go well for you. Please post on the board later and let us know how you are feeling after the first infusion of Ac-225. Again, all the very best to you.
Thanks! I'm starting to get nervous since I leave this Sunday. My radiation oncologist here told me it made logical sense. He hadn't even heard of it, and was in one of the major NYC hospitals b4 returning to this area to raise his kids. We know him as our kids go to school together and he's always been a straight shooter with me. My onco here says go for it and my onco in Delhi says he agrees with Dr. Sen that Ac225 should give me a good chance to be put in remission. Of course nobody knows how durable but one can hope. Maybe I should be doing surgery but nobody knows for sure.
That's true. Nobody knows for sure. Decisions and major ones at that have to be taken without 100% knowledge most of the time.
Once again, all the very best, Chris. Let hope you come out of this with the disease having regressed. Please post later. Thank you.
Had my prostate removed September 28th. Declared cancer free fee october 7th. Path showed seminal vesicles , etc free from malignancy. Histo path showed part of prostate now benign and Gleason 3+2 for 5 after being 9 b4. i don't even feel sick anymore. Dr. Narmada Gupta removed my prostate via DaVinchi. Continent right out of the gate after having the catheter removed. PSA 3weeks post op was a little concerning at .04, but I have read on here you need to wait a little longer for it to settle. All I know is I feel really, really good and am working 70+ hours a week again which I could not do pre surgery. Should have had it out after 6 vaccines as I had already had 30 mets disappear, but nobody knows. I was hoping the tumor in the prostate would resolve, but it just would not. I feel very fortunate I respond to vaccines so well. Now we will see how durable is my response. Had more vaccines made from my fresh tumor to catch any CTC's(circulating tumor cells) again since we know I respond to the vaccines. Plan is a total of 4 infusions of Keytruda and continue on Xtandi until done with the Keytruda and then continue with the vaccines until they are gone. since we had the tumor this batch of vaccines are more supercharged with between 12-14 milllion dendritic cells sensitized with my tumor antigens. Stopped Xgeva because it appears it has given me necrosis of the jawbone. Never met a side effect I didn't get.
Congratulations on your positive results! It has given me a huge boost of hope in this battle. I am desperately trying to help my father fight this! Diagnosed November 8th 2019, advanced adenocarcinoma Gleason score 9, psa scores originally over 400, multiple bone mets all over, some lymph mets... he was given flomax, Erleada and a once month ADT injections of Firmagon. Also received Xgeva once but had a terrible rash break out on his chest so never took another dose of that. He seemed to be responding fine the first few months, psa went down, lowest 40 though (which I know isn’t too low, but better than 400!)... anyway, the last 3 months the psa number keeps creeping up. About 2 months ago I decided I had to get involved (my 3rd child was born exactly one month before my dads diagnosis so I was very busy or would have been all over this from the start). As many can attest, the standard of care is poor and these drs seem numb to the condition their patients are in. I feel like they are just fine allowing my dad to wither away (even though the urologist is blowing smoke up his ass, making him think he could live another 20 years with ADT, didn’t even recommend a diet change 🙄) but I’m not about to let it go down like this without one hell of a fight!! I have dedicated every single day to researching from morning to night. I came across the book “how to starve cancer” by Jane McLelland... amazing book, that woman is a rockstar. After receiving the info from that book my dad is now on at least a low GI diet, some seafood and other than that, plant based. We just received his new meds from the Care Oncology Clinic yesterday and I’m still figuring out additional supplements he can take to try to block all the pathways and weaken this cancer so it can be snuffed out by one of the suggested “kill therapies” (hyperbaric oxygen, high dose IV Vit C, low dose chemo, etc)... so as of now that is our current plan of attack, but THEN I SAW YOUR POST... we happen to be fortunate for a couple reasons. #1) Despite my dads current state of diagnosis, he is still fully functional and gets around good, maybe a bit achy at times, but aside from cancer all other organs operating well and no other health conditions. #2) we ARE in the position to be able to afford the Apceden vaccines, as well as travel to India. Coincidentally my father owns a machine company called Indian-American Trade Group and his partner lives 15 miles outside of Delhi. We spoke with him yesterday about the information we have read through your posts and he also assured us that Medanta is a wonderful hospital and even invited us to stay at his home should my dad decided to do the treatment. My father is very nervous about the idea of going to India and going under for biopsies etc... I am SO sorry for such a long winded message lol, but please let me know how I would go about setting all this up over there in India for my dad. Do I call the hospital and contact Dr Vaid? Do I call the biotech company? Would it be worth it contacting Dr Decker at Baylor about anything? As you well know, time is ticking. I would very much appreciate any input you have to offer us 🙏🏻 Thank you in advance. -Sarah
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