Success stories remission stage 4 with bone mets

[Milo786]

Please share your success story and treatment if you got remission from stage4 with bone mets

[Milo786]

By remission, I mean off all drugs, undetectable psa, clear scans / NED

[Retireddoc in reply to Milo786]

Good morning. About 3 1/2 years ago I was diagnosed with G9 prostate cancer that appeared confined to the prostate by MRI and bone scan pre operatively. After extensive consultation/research, I chose RP (performed 10/21). PSA went to 0.016 (from pre op 7) 6 weeks post op but then rose to 0.37 3 months later. PSMA PET revealed solitary met at T8. Treated with SBRT at Emory in Atlanta.

Another 3 months later PSA 4.6 (rapid doubling time!). PSMA PET revealed new pelvic node and no activity at T8. But, given the rise in PSA, there were undoubtedly micromets elsewhere undetectable by Imaging. Although I was being treated well at Emory in Atlanta, I did extensive research for a Medical Oncologist and began treatment at Johns Hopkins. Immediate triple therapy (Docetaxel, Darolutamide and Lupron). PSA went undetectable after second chemo treatment and has remained so until now. Ten weeks after completion of the chemo I had whole pelvic radiation with boost to prostate bed and the one positive node. Darolutamide discontinued after the 3 month chemo treatment. Lupron discontinued after one year.

My T never fully recovered (52 three months ago) so my MO has put me on TRT under supervision of an endocrinologist. The change in my physical and mental well being with a normal T is astounding. My PSA remains undetectable.

My MO at JH has extensive experience treating men with oligo metastatic disease with aggressive protocol-triple therapy, RP or RT to prostate, SBRT to the limited met sites and additional pelvic radiation.

Some men have experienced long term success in treating metastatic disease. Multifactorial.

Good luck.

[Papa1 in reply to Retireddoc]

Will you share the name of your JHH doc?

[Retireddoc in reply to Papa1]

I would prefer not to on the public forum but if you private message me and give me some details of your situation I will do so.

[j-o-h-n in reply to Retireddoc]

Doc, You know that I think you're a sweetheart of a guy but I don't understand why you and other guys here are reluctant to mention their doctor's name(s) in our open forum? I guess it is what it is....too bad.... Have a great new έτος

Good Luck, Good Health and Good Humor.

j-o-h-n

[Retireddoc in reply to j-o-h-n]

John, I've had several friends ask me who treats me at JH and subsequently contacted him (his NP) for a consult. He isn't currently seeing any new patients except for newly diagnosed, previously untreated oligo metastatic disease (to the best of my knowledge). I guess I am/was reluctant to mention his name because of the above.

I am seeing Dr. Ken Pienta at JH. He is heavily involved in research of prostate cancer (for many years) as well as treating a select (certain disease stage) of patients.

[j-o-h-n in reply to Retireddoc]

Thank you..... and of course, you're still and Ace in my Deck....

Good Luck, Good Health and Good Humor.

j-o-h-n

[dhccpa in reply to Retireddoc]

Great result! We need more stories like this. Of course, you had to push the envelope, search around, and travel for something that your MO at Emory could have read about and done himself; it didn't require special equipment. That what I find frustrating.

[Eieio in reply to Retireddoc]

I am in the same path as retireddoc. One met started chemo on 3/6 finishing 3-25. Any info from your provider at John hopkins for treating this oligometasttic gray area would be helpful. One SBRT showing good news on the PSMA pet scan. I really want to stop the ADT when the docetaxel is over at some point and try the TRT or BRAC. Good to hear success stories when I’m going down the same path

[InqPers in reply to Retireddoc]

Wow, your treatment and timeline are very similar to mine. At the time (age 59 - diagnosed July 2021), my MO (also here in Atlanta) recommended Zytiga instead of Daro, as part of triplet when I had recurrence. I too was an "exceptional responder". Luckily, my T did recover in about 6 months. I'm age 63 now. I'm so happy to hear about long term success stories. I wish there was more data on this given current treatments. 15 months off treatment and counting....

[Retireddoc in reply to InqPers]

Darolutamise wasn't approved by the FDA for that treatment at that time, that's likely why you got a different androgen receptor blocker.

[lcfcpolo]

I was diagnosed in May 2020, high PSA of 1311, wide spread to bones and lymph nodes. Lupron injections and Enzalutamide (Xtandi). Current PSA is 0.03. So over 4 and half years in 'remission'. Each one of us responds differently alas. Some of the guys in here have had over 8 and 10 years.

There are newer treatments since I was diagnosed, Darolutamide and Docetaxel chemotherapy plus ADT. They now seem to offer more radiation upfront than even 4 years ago. Genetic testing may open up new treatments.

One treatment I would look at in South Africa if that is where you live is Actinium. Best wishes to your family.

[dhccpa in reply to lcfcpolo]

You're still on the hormone meds?

[lcfcpolo in reply to dhccpa]

Yes. Have remained on them throughout. Some of the guys do experiment with BAT. Whilst this makes sense, I've responded well so far and do not want to take the risk of awakening anything.

[dhccpa in reply to lcfcpolo]

Yes, I'm considering BAT. Maybe when warm weather gets here, I'll journey north to Denmeade or Sartor.

[Milo786 in reply to lcfcpolo]

Thanks. Yes I'm in South Africa. You are correct Actinium is available here, but only for the castrate resistant stage at the moment.

[85745]

may I ask what suppliments and parasites medications ? I thinking about going back to taking them. My MO scared me off them. Even though all my blood work was good . I was originally taking Fenben along with Ivermectin switched to Iver and Mebendazole. For a few months took Nitazoxanide. Liver and kidney function blood work was never flaged. The problem is I never knew if it was working.

[dhccpa in reply to 85745]

Same here about over and fenben but I keep taking. Scans have been good over 6 years. PSA is up since end of 2022.

[Eieio in reply to 85745]

Quick question on ivermectin’s. Fennel seems to have a really bad cytotoxic issue for humans. Anything to share. Isn’t iver good on its own? Any day

[85745 in reply to Eieio]

Yes , many do just take Iver, but many take it with fenben, while others just take fenben. The human version of Fenbendazole is Mebendazole. Here's a mind blower type into a search : "Nitazoxanide prostate cancer" sacredpurity.com/

[SteveTheJ]

Personally, I don't believe in remission. My scans have been clear for 3 years but I am still taking Erleada and I believe it's only a matter of time before the tumors come back. There is either cancer or a cure (IMHO). Everything else is a grace period.

The point is, take a course of treatment that gives you the best chance of the best quality of life for as long as possible. If the cancer changes, your treatment changes. Look forward, never back ... and always be hopeful.

[PELHA in reply to SteveTheJ]

Do you take Lupron or Orgovyx too or just the Erleada? Did you take them at one point and then stop due to PSA results? How is T affected by being on Erleada only? Thanks!

[SteveTheJ in reply to PELHA]

Started Erleada + Lupron April 2020. Temporarily stopped Lupron July 2023. Testosterone in Jan 2024 was 4; most recent result 150. PSA has been unmeasurable entire time.

[Yzinger in reply to SteveTheJ]

So you back on Lupron?

[SteveTheJ in reply to Yzinger]

No

[Yzinger in reply to SteveTheJ]

wow, congrats. I always think us metastatic guys need to be on it forever.

[dhccpa]

Not yet! Working on it....

[leo2634]

Diagnosed 02/27/18 Lupron , Zytiga , Prednisone, Provenge in 2019 PSA 0.1 since first month treatment. My original PSA was 14 with multiple bone mets though out my entire body. Never give up never surrender Leo

[Eggdoc]

Dx with Grade Group 5 (old Gleason's score of 9) in 2023. 8 Mets to bone only. Chemo (Docetaxel x 6 doses), Radiation (SBRT x 6 sessions) and 1 year of Darolutamide and Camcevi. Last PSMA shows all mets are inactive. PSA continues to be < 0.1. T < 4.

Agree with the other statement that "remission" may not be the best term. I will remain on ADT for life but I suppose I'm as close to remission as I could be.

[Mike65g]

Remission from stage 4 mets psma clear of any cancer. Mri confirms. On high dose immune support now.

[j-o-h-n]

Still here by the grace of our Maker.

Good Luck, Good Health and Good Humor.

j-o-h-n

[CANAMA]

I suggest that you read "Diagnosed Almost 3 Years Ago" on this site and the Replies thereto. It was authored by Retireddoc and addresses the issues raised in your post above. You will find my story there. I have remained "NED" per my PSA measurements to December 10, 2024 and my last T reading on that date was 71.

[GoBucks in reply to CANAMA]

Thanks for the call. Healthy & happy new year to you & yours. Catch up soon.

[GoBucks]

ascopubs.org/doi/10.1200/JC...

Although I am not in the above trial, I have stopped treatment. My last 6 month lupron shot was in December 2021. My last Zytiga pill was on June 2, 2022. After surgery in July 2017 my first post-op PSA was 0.14 and rising after that. Axumin PET scan showed multiple bone mets so I started doublet therapy in late 2017. Almost immediately my PSA was <0.01. After 4.5 years of treatment my MO had no problem with me stopping meds. I have remained <0.01 for 2.5 years since. My T never recovered(not surprising after 4.5 years of suppression + getting older) so my MO ok'd T supplementation. I've been doing that for about 5 months now. Almost to the lowest end of normal (151). My body is full of hair again and I feel the best since 2017. Just like in 2017 before I was diagnosed, no one knows what is next. I feel blessed and will continue to enjoy the ride.

[Milo786 in reply to GoBucks]

Your response to treatment is nothing but amazing. I scratch my head every time I read your story, its not common right or outlier as they say, defyingthe odds almost miraculous. .You were diagnosed with multiple bone mets, gl 9, pten somatic mutation (legend has it that this mutation causes castration resistance sooner ) .

So you almost 8 years, No chemo, no radiation and now no treatment going on 3 years. Truly blessed 🙌

And then theres us, Were struggling with just one spot, My husband has 1 spot on the pubic bone,(psma) April 2023 at 50 yrs old, chemo, radiation , erleada , zoldex , undetectable, pten (prostate sample tested). And the spot still lights up as per scan (though reduced) last March. Repeat one comming up 31Jan.

His dr said no chance of stopping treatment unless scans are clear. I feel hopeless.

[StayingOptimistic in reply to Milo786]

”legend has it that this mutation causes castration resistance sooner ”. Where have you seen that please? I do have the PTEN mutation also.

[GoBucks in reply to Milo786]

No one knows the why. Some guys have no response to multiple treatments. Hopeless is not the right word. Anxious is a better word. Your guy is undetectable but still has that pesky spot. I think a vacation will be in his future. Re: pten, I think that is very common in prostate cancer. I recall reading about some recent trial focusing on that. Not sure I ever saw anything about early resistance.

[Retireddoc in reply to GoBucks]

Good for you! I, too, beganTRT several months ago after a couple of years of undetectable PSA following triple therapy treatment for oligometastatic disease. My QOL has improved considerably on TRT. My T is in the normal range and my PSA remains <0.1. Hair growing back, mood improved, libido and erections back, energy level up with a general improved sense of well being. Didn't realize how much I missed my testosterone.

[Milo786]

I think Ive read a reply to someone post and Tall Allen said that was the case with pten loss. Actually i went back and checked, Tall Allen answered that on a question You posted about a year ago.

[StayingOptimistic in reply to Milo786]

Can you do me a favor and send me the link to that post please? I would appreciate it. Thank you. I can’t find it.

[petrig]

Here in Finland they do not recommend radiation if you are in mhspc(metastases in bones ,lymf nodes etc) .Triplet therapy Adt+Docetaxel+Nubeqa.Radiation when risk to spine compression or a lot of bone pain..Radium-223(xofigo)when bone pain in castration resistent pca.And Xgeva(denosumab) also when hormone resistant pca.There is a role for prostate radiotherapy in preventing rPFS, mCRPC, and serious GU events in low-volume mHSPC patients treated with intensified systemic treatment (androgen receptor pathway inhibitor + standard of care) without increasing toxicity or deteriorating quality of life