as most of you know...I still look(and mostly feel) pretty great. BUT my PSA is just under 1000 and my last scans showed cancer in 97 % of my bones. So the picture is not pretty. (kinda reminds me of "The Picture of Dorian Gray". Everyone keeps telling how good I look and how I don't "look like" I have cancer...oh, and how I don't look 64.
HOWEVER, My treatment options have fizzled out...I've done almost EVERYTHING...radiation(originally and again more recently when I only had 3 cancer spots showing up), HIFU, Chemo, (chemo again, recently which dropped my marrow's production to almost nothing so I just did one infusion). Provenge, Xgeva, Lupron (now castrated for real since my dog said it was no big deal...and he was right). The last 8 years have been some party! REALLY (well not so much at times)...especially when my urethra has clog up and I have to go in for catheterized to clear up the blood (from the scar tissue left in my urethra around and near my prostate area...from the lovely radiation and HIFU)
All this to say...I spoke with Dr. Onik this week and he sounds great...and he's within walking distance (almost) from my house in Fort Lauderdale. He says he would (as he did for himself) create a individualized "immunotherapy" from taking some of my cancer cells with a biopsy and using that to create something that is injected back into a cancer area and having it spread the "immunotherapy" and (in his case with stage 4) create a durable cure. He says that there is appx 30% chance of this...and that there are some cases where it just helps and some where it ...has bad side effects.
That said....Please help me if you are familiar with him...or have had treatment with him. It's all "out of pocket" and I feel so blessed not to have any real "heirs" we care about (and my Husband's life expectancy is very low--Lewy body Dementia) ...so I have the money to spend and then some...but I want to make sure it's a wise move.
gJohn
For Picture...I'm going to add my bacon/egg/roll I had for breakfast. Not a real exciting thing....but it was SOOO delicious.
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Addicted2cycling knows him. Also have you tried YouTube? I have seen a video of him talking and a short talk about who he is and where he comes from. Definitely out of the box and not SOC.
and very expensive....with a "cure" rate he says of 30%. I just want to make sure I'm not adding more side effects to my life....without slowing down the beast within.
I can imagine thats a very difficult decision. Reminds me of Patrick Turner and his pursuit of RA223. I have to wonder if he would have lasted longer without it. I read an article about people living longer on palliative care than pursuing these hard on your body treatments when the disease progresses to a certain point. I also understand that desire to fight until the end and go down fighting which reminds me of Tom. To each his own and life is good. Off for some spicy Indian food or as they say in India, food.
The 30% cure rate sounds wonderful, but what I really want to speak with him about is if it doesn’t work what are the downsides. From what I understand very quickly from him it does not affect the blood like the Marrow As does chemo and radiation. My partner and 44 years now husband of almost a year Has Lewy body dementia… I am his only caregiver, and I really want to last a lot longer to keep as much of our life intact before he needs to go into a memory care situation in a nursing home. We have plenty of money to pay the cost, but I just don’t want there to be bad side effects that make me less capable of being a caregiver to him and to myself.A lot of decisions are not easy. This is one of them. Thank you so much,
The part about wanting our loved ones to be taken care of is not difficult decision for me, so I understand that part of your dilemma. You are blessed in many ways so I know you will find the right decision for you and yours.
I'm going to have to ask if that's what it is. He was talking about taking part of the cancer from a bone and using that to form the "immune" thing...using this re-injected into bone cancer and it would spread by abscopal effect to whole body. I wish you knew someone that had gone to him. He's so convenient (unlike Omaha) he's just a couple of miles from out house...on the phone he comes off really well.
There have been people on forums who've gone to him for prostate ablation, but this is different. He's not a flake, if that's what you're wondering, Ask him if he uses leukapheresis to isolate dendritic cells before he incubates it with metastatic tissue. If so, that is like Apceden. In fact, ask him how it's different from Apceden.
Thank you so much.. now I will be able to actually ask him a question that I can feel good about the answer. I’ve asked to have an in person meeting and see the facility/clinic before I make a commitment. I was hoping that someone on here who has more experience with him with elaborate how their experience went.
It sounds like that treatment that cured some brain cancers. But not others. Where they injected some dread diseases in the brain cancer. I haven’t heard how that has shaken out. But it sounds interesting and worth a try, especially given the options.
OY...if it was a little less than 60K.....I'd be more thrilled. But price is irrelevant if there is a good chance it might work. I've got a lot to think about.
Spoke to Dr. O. last week. He phoned me but I wasn't able to answer so he left a message beginning with, "Hi John, you must be out riding your bike ... " --- YUP, I was out on a 30+ miler, HA-HA, he knows me well.
Glad to read that you have contacted him and I HOPE he is able to help.
Can you please share his contact I tried reaching out to him for my father who has advanced prostate. What is the approximate cost? Now flying to Germany this week to try lu177 hoping this will help him. We are in Canada with no options left. Thanks
Get a second and third opinion on this treatment by immunotherapy specialists. There is so much research going on with poor results so far. But Gary Onik somehow has developed one that works well for PCa? All you have to do is pay a lot of money?
that's what "he" says...and he seems convincing. He did say there is a 30% chance of "cure"...and that's what he got from it. Sounds like a no brainer...but just unsure about how the 70% fair. If there's some improvement for most...and only a small chance of worsening symptoms....NOT so great.
He has to be convincing if he wants you to get treated by him. Here is an abstract about his therapy which he published: cancerres.aacrjournals.org/... He had 9 CRPC patients yet, probably not as advance as you are.
If you have that many metastases I do not understand how he wants to inject this cocktail of immunotherapy drugs into all of your mets. An apscopal effect has occasionally been observered but you cannot rely on that effect. As I said talk to other doctors what they think about this therapy.
I would rather get an Actinium therapy which is known to work. Scott Tagawa is conducting trials with that: hmpgloballearningnetwork.co...
GP 24 - I always find your posts very inciteful and thought provoking. Thank you for helping many of us warriors.
For John -
I am on one of Tagawa's most recent trials, which started in August 2021. You may be aware he is located in NYC at Weill Cornell. My posts about my experience with this trial, using a triple therapy of Ac225-J591 + Keytruda + Xtandi, can be found on this forum.
Honestly, if I were living so close to where I can get potentially beneficial treatment, I would definitely give it serious consideration. I know you are, and you will get answers to your questions in order to make a viable decision.
I had contacted Onik's office a while back, can't remember when. What he is doing sounded very promising. To me, living in the NY metro area with multiple major cancer centers to choose from, I decided to get treated close to home.
I try to find the best doctor for the therapy I have planned. These are usually not close to home. With Actinium you could fly to New York, get your infusion and fly back. If you have a budget of 60k.
Here is a list of trials by Scott Tagawa currently recruiting:
I can’t offer anything other than to say, whatever you decide, you’re not on your own. You’ve helped so many on this site, many are wishing you well in your decision.
Hugh,Thank you so much …I am humbled by the outpouring from everyone on here. I would like to do something that offers hope for people in late stage. Hopefully I will get to meet with the doctor this week in person and can make a decision based on that. But someone who has been to him already named John from on here gave him glowing reviews and said he was an excellent person who really tried to help his clients.
Yes, you & I have similar questions. 30 % cure? Stage 4 goes undetectable? 70% do what? Go to hospice or just don't respond with no real effects? Finally, ask him where he thinks is the the best ice cream place in S Florida. Wishing you the best always in your difficult decision making.
Wishing you the best! I hope it will work if you choose that option. 🤞
Drive to an area where mankind hasn't polluted the night skies. Look into the stars and there you will find your destiny. ( I'm an a American Indian.)
• in reply to
Interesting comment. I live in Glendale, AZ. The light pollution is so severe that I see fewer stars than I used to see as a child growing up on Long Island. I went on an ocean cruise hoping to see a night sky full of stars. Nope. Cruise ships are draped with lights. I guess that lessens the chance of collisions. I might add that to my bucket list -- to find a place to enjoy an unspoiled night sky. It would be a fine meditation unavailable to most.
Galápagos Islands. They strictly control tourism and who even is able to live on the islands. It was one of my dads bucket list destinations to take my boys when they they were older. Unfortunately Metastatic PC got int the way. We went 2 years ago with the boys, a tad too young. 5 and 7. The 5 year old can’t remember Disney, but vividly recalls most of the islands. I can still barely speak about the experience without crying, a good cry. It was the most amazing place I have ever been too. The stars, they were indescribable. The whole 10 day trip was a mediation. The 6 of us, my parents and my family of 4 honestly spoke very little, except at night. It was too breathtaking, awe inspiring and life changing.
I'm probably asking this out of ignorance, but that's never stopped me yet. [;-} Is the bone cancer definitively from prostate cancer cells? I mean, if he's generating immune response, does it have to be a response to prostate cancer? Will it be the same as if to bone cancer? Or any other cancer? Like some meds work against certain cancers but not others. I guess he would know from examining the cells if he's shooting at the prostate cancer? I'm way above my pay grade here, and I'm not sure I'm making myself clear, but maybe you know what I mean. God, I want the best of galactical-caliber goodness and power for you.
If it were me, I’d ask TA’s questions and I’d ask for specific numbers. How many has he treated with this new protocol and how many have been cured. Then I’d ask to speak to at least 3 of the cured and a couple of the uncured that are still around. If he comes up with excuses to not have the cured speak to you, you can be sure it’s not real. I can’t imagine that someone with end stage PC who was really cured by him wouldn’t be thrilled to talk to another prospective patient, can you? I’d also ask if he is the only one in the country doing this protocol, and if so, why? If it’s because it’s his invention, does he have a patent? Is he working with a drug company to get a trial done? Just imagine how much money there would be to be made if 30% of advanced PC patients could be cured. Provenge that adds about 4 months of life only, is a blockbuster drug. Don’t be shy about asking tough questions. None of this makes much sense, and it’s going to cost a bundle. You have every right to know. If he starts playing the game of “well if you don’t trust me then perhaps this isn’t for you”, run for the exit. These are reasonable questions.
John. Never give up, I’ve read of that treatment. A friend of mine had a father that was on his last few months. He went to Texas and had a treatment where they drained his blood and froze it. Then put it back in. That was 5 years ago and still kicking. Of course it’s experimental and expensive but what the hey. 🙏🙏🙏🙏🙏
And that years ago he spoke with Max Roach, MD, on UroToday. I was surprised to see that it appears Dr Onik has impressive credentials and had advanced prostate cancer himself ..if I am reading the Internet correctly..I haven’t had a delicious breakfast yet.
Thank you so much for sharing your life with us..your humor ( and food commentaries) mixed with your struggles are inspiring.
I am so glad that forums like this exist to help so many make such difficult decisions.
I truly believe a message will come to you telling you if this is the right path to walk, sometimes we need help from above in our decisions I pray you receive it.
You have so much on your plate other than that delicious looking sandwich. It seems you have the resources to buy some peace of mind. Think of what life would be like without you as care giver. Automate an action plan of well-being for all the people and things you love. Be sure that plan, whatever legal and financial form it may take, provides the care you may not always be able to give. ...and then go for that 30% in that inspired greatjohn way of yours.
Onik is a fascinating story. I reached out to him and have decided if all fails he was the go to guy.
Hi GreatJohn...I'm watching this closely...as I've said in the past, I'm about a year behind you...12 doses of Jevtana so far, then LU177. That said, I'm starting to plan long term and aside from Dr. Onik, I'm also looking into a personalized vaccine...see linkrgcc-group.com/news/persona...
My sister in law has a close friend that had Stage 4 Breast Cancer...there are several foreign clinics offering personalized vaccines such as the clinic I linked above. By personalized vaccine...as I understand it, they take a sample of the cancerous tissue and make a vaccine that it responds too...Anyway, she went there, got the treatment...and now she claims to be cancer free. I discussed this with my oncologist who said there are many unknowns; but the science is working in that direction.
The treatments given in the published abstract are definitely not APCEDEN. He is freezing a met site (1?) stereotactically, “in situ”, with a cryo probe to kill and burst the cells and then giving two immunotherapy drugs. One injected at the site immediately and the other over time. His series is quite diverse and not broken down. Would ask specifically about only those with heavily pre treated mCRPC and widespread bone mets such as yourself. How many like that and how did they fare? What “live” imaging system is he using to guide the cryo targeting?$60 K sounds excessive for the procedure which probably takes a couple of hours. So how much is for the drugs and for the facility? Talking with a couple of patients similar in situation to yourself would be the best way to decide. Best of luck GJ.
I was hoping by posting this post that I would be able to speak with someone on here who has done pretty much what I am thinking about doing with Dr. Onik. I’d rather do that than speak to someone he chooses to help me speak to. But either way it would be a good idea.
Understand. Just offering what thoughts come up upon reading his published abstract. Needs to be parsed to see what applies most directly to your situation. Not clear how many in that were so advanced. Pulling for you. Every day is a precious gift, as it has ever been.
It’s a hard issue to deal with….Especially in my condition. He is still very lucid and I keep telling him that I wish I was healthier so I could be a better caregiver. At times I am worn out by him not being able to help me with things and I get a bit angry. But all in all my pushing him I believe is helping him stay more active and more lucid. He’s on a drug called “excelon” and it has been helping quite a bit as well. He still cannot drive so I am our only chauffeur to all our doctors appointment. That’s not easy as this week we have overlapping appointments in different parts of the county 😳Big hugs
John …you are Blessed. Notwithstanding the disappointment of your failed treatments you have the desire to live but the gift to accept your demise with grace and dignity. And that is evident in everything you write.
Gary Onik is a” one off” . A brilliant guy that works outside institutional guardrails . What he does is a form of APCEDEN : Substantial tumor regression in prostate cancer patient with extensive skeletal metastases upon Immunotherapy. You can google the papers.
He uses his own “ cocktail” of drugs to inject into the cancer. If you send him the APCEDEN papers before you meet and ask him to walk you through his protocol along side APCEDEN you will be able to compare the two. He may not be willing to share with you the ingredients in his “ cocktail” for the reason that if it is efficacious, that cocktail is worth billions. But you will learn about the side effects.. You have demonstrated your due diligence skills many times over . .So everyone will be interested in following this leg of your journey. We will be thinking of you.
I have spoken with Dr. Onik a couple of times. He is the real deal, many papers published in peer reviewed journals. My understanding is that as a grad student he was one of the originators of cryo therapy. He did some of the original surgeries using IRE with the inventors at Berkely. My impression is that he is brilliant if a bit iconoclastic, definitely thinks out of the box. I think he may combine cryo and IRE ablation. For that procedure alone the cost is in the mid $20,000's. The immunotherapy drugs at $10,000 a dose are what adds the other $30,000.
As Tall Allen, the best, most informed patient advocate we've got, said in his post, Dr. Onik is not a flake. I agree. He is not. I know this to be true because I was Dr. Onik's patient for five years.
After I was diagnosed with localized Grade 5, Gleason 10 disease in March 2016, I eventually found out about Dr. Onik and was treated by him with immunotherapy, focal cryoablation, and IRE in a series of four procedures ending just last year. These procedures greatly reduced the extent of the disease -- managed the disease, if you will -- but they did not cure me of the disease. Based on two PSMA scans I had, the first at MSKCC (January 2020) and the second at UCLA (May 2021), the detectable cancer has been reduced to a single 7 mm lesion adjacent to the prostate. Managed but not cured.
Would I do it again? Yes, definitely. Gleason 10 cases are relatively rare. Treatments available in 2016 for Gleason 10s appeared to me to be one of throwing the kitchen sink at the disease and hoping for the best. QOL was sacrificed for sheer survival.
Dr. Onik had a different approach, one that offered the hope of a cure (but not a guarantee) while protecting QOL. In the end, Onik could not deliver a cure for me, and he might not be able to cure you, but he could at least help you manage your disease.
In my experience with him, he devises treatments unique to the individual, patient by patient. His immunotherapy for me was an injection of Yervoy, Opdivo, and Leukine directly into the prostate, coupled with focal cryoablation. I later had IRE and more focal cryoablation when I experienced BCR.
The existential twist to the Dr. Onik story is this, as you know: Dr. Onik, whose specialty is prostate cancer, is now himself a Stage 4 PCa patient. He seems to be approaching his disease by treating himself as he has treated others: finding, or developing himself, innovative treatments. They will not be standards of care, but they will reflect the best thinking out there on curing advanced prostate cancer.
As for the money question, I am confident he is not in this for the money. There were too many times over the years when he could have charged me for services but didn't.
A final bit of advice: if you choose to work with Dr. Onik, get to know his medical associate, Dr. Zuri. She can be helpful in many ways.
YES INDEED, Dr. O is unique and has been an outside the box thinker from back in the '80's. The bicycling buddy who hooked me up with Dr. O recommended him above all the doctors he assisted in hospitals up and down the US East Coast during cryo procedures and mentioned that Dr. O's skills were such that he would perform procedures other doctors would not dare to try. To cryo the crap out of the right half GL10 prostate and not affect beyond the capsule and save the nerves he used enough probes that would be used for an entire prostate cryo thereby reducing the extension of the FREEZING BALL. Slow freeze and passive thawing took longer than a normal treatment but he is meticulous and concerned for our well being. Wonder how many castrated/GL10 treated men are provided with a one off immuno injection and then would have their doctor prescribe Testosterone replacement once treatment was done feeling confident that the benefits outweigh the negatives. His immuno for me was a first time combo and only time will tell if a booster is needed or modified.
You indicate you have had focal cryoablation, and IRE in a series of four procedures ending just last year. Was each treatment directed to the prostrate? Dr. Onik is known to use Transperneal Ultra Sound Guided Biopsies which are the gold standard since they are known to find 90 + percent of the lesions compared to the hit/miss of the TRUS biopsies. I am confused , therefore , how those biopsies could could consistently not find a lesion which was later found after a PSA rise. Perhaps the treatments you refer to were immunotherapy injections and not further ablations.
Dd7757, yes, each treatment was focused on the prostate gland. And you're right, Dr. Onik was doing saturation transperineal biopsies well before it became a thing in the PCa community. Those biopsies were also focused on the prostate gland. The 7 mm lesion was outside, but adjacent to, the prostate gland. It certainly was obvious in the PSMA scan taken at UCLA.
John, my brother also spoke to Dr. Onik a couple of years ago. Unfortunately his mets were too small to get a tissue sample. He also had his prostate radiated so that option was out. He was very impressed with him and had a great conversation. We had done quite a bit of research and concluded that he was the real deal. I wish you clarity as you contemplate this difficult decision.
thank you soooo much. I value your opinion of him. Just from my phone call, I was impressed. I hope to get an in-person visit with him this week and hope to make a decision really soon. Thanks AGAIN,
Just wow! So much information in this thread. Best of luck greatjohn! Cautiously very optimistic. I know you'll keep us posted...you are very generous that way.
Your sandwich looks delicious. Wishing you lots & lots of sandwiches in your future.
I have just watched the you tube video Part 2 where Dr Onik as (lead surgeon!) is himself on the table and under a spinal and had a collegue use his innovative treatment and perform this operation - I guess i'm impressed with people that put their money where their mouth is ! - He appears to be a commited Christian and as Boonster said above wants to help the community of sufferers first before amassing a large pot of money ! - I just hope I can get to him by the time I also need to here from the UK - I will be rooting for you John as all the others are doing on this post - but again its obviously your call - Sometimes I think we are all like boxers - we all have our ultimate goal - yet even with all the applause and well wishing, we must enter the ring alone - which on a lighter note reminds me the Fury part 3 fight is soon, I wonder who will win that one !
And again the best of wishes if you choose Dr Onik -John - Kindest Raoul
and good luck everyone with your own fights and bouts !
I would be happy to share our story with you of Dr Onik. My husband had two treatments with him: April and May of this year. Both sides of prostate. He has metastatic PC with bone Mets throughout his skeleton. I do not want to dissuade you, but it did not work for him. Unfortunately it cost him six months of other treatment he could have been doing. He had had one infusion of chemo and one injection of firmagon one month prior when we went the first time. Numbers ended up looking good after first treatment so he had us come for second treatment a month later. Little did we know it was the residual effects of chemo/ADT…I can’t dwell on the hope lost but it was something we had to try. He is very personable and easy to communicate with along with his small staff of 3, including his son who is a DO.
Your husband experience with Dr. Onik it’s very much like my experience with LU177. Had I not done it, I would’ve seen it has a chance missed for a big remission. Having done it and gotten such bad results, I wish now I had not done it, but really can’t regret doing something that seems so right. We all have our destiny. Thank you so much. What type of treatment With him? He’s talking about doing the personalized immune treatment for me.gJohn
You spent $100,000 for two treatments? He has quoted me $60,000 for the immunotherapy. My LU 177 you can find in my earlier post. It’s best if you actually read them as it’s happening.** I can just tell you after it’s all done that I thought it was gonna be the miracle cure for me, I jumped through so many hoops and prayed and work so hard to get in the study, only to find that one treatment has probably destroyed by chance have any Kind of long-term remission. Read the post under my profile in the proper order so you can see how this happened. I do know that LU177 Has been amazing for many people on the site.
I’m sorry for your story. I feel you. And yes. For the two treatments plus we flew from WA state to Florida and each time had to spend 7 days there in a hotel because of the schedule. Plus food and car rental, etc. and his labs were not covered under our insurance because of his location as the ordering doctor. You can’t really put a price on a life…it’s a hard situation to be in. We have to live with no regrets and try anything that gets put in our path. I’m just hoping one thing leads to another and maybe something g will work.
I wonder if I can get my doctor in my HMO to order whatever bloodwork the doctor orders for him? That would save me a bit of money I suspect. It’s really not the money so much that I’m actually worried about, it’s doing something that’s not gonna make life better and perhaps might make it not as good for quality of life.
I had 2 immunotherapy treatments with Dr. Onik last July and September. Before going to him I had some bone mets in the pelvic area (sacrum and ramos) and some small lesions in the bladder area. It was a very good experience with the exception of a little pain from being stuck in the bladder area, but wasn't long before pain free. As with any doctor, getting all the details as to what he was using, what he was doing and afterwards what did he see or find that I could feel good about or worry about. As to whether it was a cure or not is difficult to say but there has been no side effects so far from the treatments.
Crickets..... I always get leery when people state that they're getting experimental treatments and then go silent. Seems to be a bunch of Onik's patients or wannabe patients that have not shouted loudly from the rooftops about how well the treatment worked for them.
I spoke with Dr. Onik a couple of weeks ago. I did the initial paperwork to become a patient but not sure of timing. Xtandi and Firmagon seem to be working for me now. If things go south I will consult with my MO and possibly others to get a read on his treatment. He said 30% chance of long term remission to me also with a $60K price. Seems like a straight shooter with a wonderful story on how he treated himself with this method. Trying to get smart on this stuff but it's pretty overwhelming. Good Luck!
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