Anyone have any info or experience wi... - Advanced Prostate...

Advanced Prostate Cancer

21,020 members26,201 posts

Anyone have any info or experience with Dr. Gary Onik and his Immunotherapy?

SuppWife profile image
20 Replies

Does anyone know how his immunotherapy compares to Provenge and Car-T? His treatment is all private pay and is upward of $60k. We do whatever we need to to get that if we knew there was a good chance of helping. What are the potential downsides of immunotherapies? Do the side effects of these therapies vary? Any info will be appreciated.

Thanks

Written by
SuppWife profile image
SuppWife
To view profiles and participate in discussions please or .
Read more about...
20 Replies
GP24 profile image
GP24

There were many immunotherapy trials für prostate cancer with no success. But Dr. Onik developed an immunotherapy on his own which works well. I do not believe this.

Great John was planning to try this therapy.

addicted2cycling profile image
addicted2cycling in reply to GP24

Did not GJ have one Lu treatment (?) and I mentioned Dr. O. before he went but he didn't followed up until after at which time I think the treatment had begun to create an issue of its own.

lutathera.com/serious-side-...

" ...... What are some important things to know about

LUTATHERA® (lutetium Lu 177 dotatate)?

All prescription medications come with safety considerations. Some considerations you should be aware of before starting LUTATHERA relate to:

Radiation exposure

Bone marrow problems

Secondary bone marrow and blood cancers

Kidney problems

Liver problems

Hormonal gland problems (hormonal crisis)

Infertility

Please see more information on each of these considerations below, as well as additional warnings regarding pregnancy, breastfeeding, and use of birth control...... "

GP24 profile image
GP24 in reply to addicted2cycling

Luthathera is a different drug used for neuroendocrine tumors. Unfortunately not successful with neuroendocrine prostate cancer.

Javelin18 profile image
Javelin18

I don't have any knowledge of Dr Onik's therapy, but I'm signed up for a CAR-T trial at City of Hope. I have an understanding of Provenge and CAR-T.

Both use the immune system to kill cancer, but through different paths. Provenge harvests dendritic cells, exposes them to a cancer antigen, grows a large number of them then reinjects them. They then train T cells to recognize the antigen as foreign.

CAR -T harvests T cells, which are genetically modified directly to recognize a cancer antigen. They are reinjected to kill cancer cells.

In the City of Hope trial, the immune system is wiped out a few days before reinjecting the T cells. This turns out to be critical to success,,since parts of the immune system prevent the cancer from being attacked. It seems that Provenge isn't successful, because it doesn't do this.

I would need to understand Dr Onik's protocol to see how it is able to overcome immunosuppression. With the complexity of the immune system, it seems difficult. However, the lack of understanding could cut both ways. It may be that it works for some, without us understanding why. This is a theme that carries over to most therapies.

Ptripp2 profile image
Ptripp2 in reply to Javelin18

Is this trial only for CRPC or can it be sensitive?

Javelin18 profile image
Javelin18 in reply to Ptripp2

The trial at City of Hope is for mCRPC. Here's the link to the trial information clinicaltrials.gov/ct2/show...

treedown profile image
treedown

We have a member who is working with Dr O. I suspect he will reply. Addicted2cycling, or you can pm him.

Javelin18 profile image
Javelin18

I looked at the study abstract in his website. The therapy kills cancer by freezing part of the tumor, then injecting checkpoint inhibitors and immune system stimulation into the frozen area. It looks like this causes the immune system to recognize the antigens from the frozen cells, then attack them elsewhere in the body.

The results in the abstract look good. It is interesting that the checkpoint inhibitors work more effectively in this treatment than when used by themselves. My understanding of why checkpoint inhibition hasn't been successful, is that Tumor Associated Macrophages (TAMs) are a major immunosuppressive component. Since they are still there, I don't understand why they don't prevent it from working.

There is a drug from Australia under trial, that uses the immune system to attack distant cancer aftrr irradiating a tumor lesion, This sounds like a similar process.

SuppWife profile image
SuppWife in reply to Javelin18

Thanks so much for your replies. I’m studying them. I really appreciate it.

Quack, quack.

addicted2cycling profile image
addicted2cycling in reply to

Nameless999 wrote -- "Quack, quack."

?? 🤔

Have you spoken to him?

FRTHBST profile image
FRTHBST

I had Dr. Onik's therapy in December. I would say that he is a brilliant iconoclastic physician. As a graduate student he helped reinvent cryo-therapy, developing tools and methods still in use today to target cancers that weren't operable using standard surgical procedures. Later, he was one of the inventors of the Nano Knife. Javelin 18 gives a good summation of what he is doing with immunotherapy. In his study about 50% of patients are cancer free at 5 years. If these results hold up with larger numbers of patients, they are close to what one might expect from many SOC therapies. Of course all of this depends on the starting point. If one has an aggressive cancer with distant metastases, 5 years without BCR is very very good. His practice is called the Center for High Risk and Recurrent Cancer, so he is trying to address patients who may not have many good SOC options.

That his treatments do not have the side effects of SOC treatments for me was a huge factor in my decision to gather the resources to go forward. You can link to my background for more information as to my particular diagnosis and experience since. We are all different in specifics of our diagnoses and treatment paths that could be most effective. For me, trying Dr. Onik's procedure was reasonable.

I went to Dr. Onik's office in Fort Lauderdale. He reviewed recent PSMA and Axumin scans as well as MRI's and other information in my chart. The appointment lasted well over an hour. He answered my questions and asked some of me. His son, Dr. Casey Onik and his assistant Dr. Vega sat in. I found them to be warm and sincerely interested in my particular case. He decided to treat 3 different areas and biopsy each one. In my case only one biopsy sample would go to the lab for a complete transcriptome analysis(at about $3000, it was what I could afford), the others to be held if needed for future use.

Dr. Casey Onik and I then went into a different office. He explained in more detail what the procedure would entail and what would be involved in follow up, one of the immunotherapy drugs is taken once a day for about a month after treatment. The appointment was lengthy and thorough.

I booked a room at a Hotel near the clinic in Miami. Early the next morning I took an Uber to the clinic. An anesthesiologist put me under and I woke up later in the day feeling groggy. I had a little discomfort, soreness in my peritoneum, a bit of bleeding from sites where the needles went in. I had planned another day to recover, and I did feel a little tired. I could easily have traveled the day after though.

My experience since has been great. I can call anytime with questions. Dr. Casey Onik went over the 83 page transcriptome report and we are using that information as a guide to further treatment possibilities. If 50% of patients are cancer free, I still don't know which half I fall into. My PSA was above 30 when I went in and is about 20 now. I'm hopeful and realistic in my outlook.

I wish you all the best in this journey. Whatever your choices, a wealth of information from some very smart and experienced people is available on this site.

davenj profile image
davenj in reply to FRTHBST

Dr. Onik had advanced prostate cancer and actually performed the procedure on himself with the help of two other doctors.

addicted2cycling profile image
addicted2cycling in reply to davenj

davenj wrote --- "Dr. Onik had advanced prostate cancer and actually performed the procedure on himself with the help of two other doctors."

Dr. Onik instructed/guided his friend (a school mate doctor) in performing the procedure having had a spinal instead of the general since it is his own protocol.

SuppWife profile image
SuppWife in reply to FRTHBST

This is so helpful. Thank you so much for sharing your experience. We’ve spoken to Dr. Onik and are in the process of getting medical records sent to him for consult. Thanks again, so much.

addicted2cycling profile image
addicted2cycling in reply to SuppWife

If your in person consultation is similar to ours (wife and mine soon to be 7 years ago) you should find that Dr. O to be methodical in procedures and truly concerned about the overall well being of his patient and patient's family. Good luck and please keep us updated.

SuppWife profile image
SuppWife in reply to addicted2cycling

Thank you so much. I definitely will.

j-o-h-n profile image
j-o-h-n

Keytruda an Immunotherapy drug worked on my lung melanoma. The rumor back a couple of years ago is that it cost $30K a treatment...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/21/2022 7:24 PM DST

addicted2cycling profile image
addicted2cycling in reply to j-o-h-n

In 2015 before Dr. O's current protocol I received a single combo injection of Keytruda + Opdivo + Yervoy in situ the 7 month old cryo'd right half GL10 side of my prostate at a far lesser cost.

j-o-h-n profile image
j-o-h-n in reply to addicted2cycling

In those days 1/2 of the Keytruda was crude oil...... now with the price of oil.... they replaced the crude oil with fried chicken fat.....

Thank Goodness we both beat the major increase in the oil fiasco.......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/23/2022 3:56 PM DST

You may also like...

Anyone have a success story with Dr. Gary Onik?

greatly appreciate any success stories on getting into remission or being cured by his treatments....

Anyone Know of Dr. Gary Onik. AKA Dr. Hope

that might have seen his video on Prostate Cancer, etc. Here is a link to his video Your comments...

Bruzynski? Anyone have any experience?

just curious if anyone has experience with his treatments - good or bad, and for some of the more...

Does anyone have any experience with Maitake Mushrooms?

friend was at a \\"talk\\" and heard that they were good for slowing prostate cancer. I checked...

Don't take Tylenol (acetaminophen or paracetamol) if you are using any kind of immunotherapy

regulatory T cells and PD-1 expression, which stop immunotherapies from working. It also changes...