such a strange feeling to have been told that this might act as a curative (not palliative) treatment. That I might be able to go off of Lupron...or that it might just give me a somewhat durable remission. All things I haven't dreamed possible for the past 5 years of treatment post radiation. It's been 6 years since I did my first radiation to the actual prostate and the new machine is like centuries MORE advanced looking. It's amazing what a few years does for treatment...especially when a hospital (University of Miami) is now recognized by the NIH. Enjoying the cooler than normal air in Ft. Lauderdale. "eDiam"~~every day is a miracle.
*I am being treated for cancer found in two lymph nodes in the pelvic area and one small "superficial" spot on my left pelvic bone.
gJohn
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greatjohn
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Your story serves as a reminder to all of us. Medical “professionals” have medical “opinions” about our situations. Their opinions are assumptions made based on the available data about us, as interpreted By them. Clearly what they have learned/experienced along the way will influence how they treat us.
In your case of low burden “oligiometstatic” disease the chances of getting a durable remission are good! I’m glad you found a Dr who understands that!
GJohn, I love your dog. What would we do without them in some of these times? Yours would be a puppy snack for mine since he's a beast. LOL 70 pounds. I hope this new treatment improves your QOL. You are in my thoughts and prayers, brother. 🙏🙏🙏🙏. Arlis
Great news GJ , man I sure hope you get that durable remission straight out. Thinking good thoughts ( transfer of merit ) for the success for you brother . 💪💪👍👍😁😁
I didn’t think they would do prostate radiation twice. My RO told me prior to my 30 sessions of IMRT last year that it could not be repeated due to toxicity.
We were able to get on the list for the PSMA scan at UCLA about 2.5 months out cost $2,800. We opted to go to Germany for a PSMA where they were only 3 weeks out for $2100. We have free travel benefits. Our insurance does not think oligometastatic treatment is a thing and our scans are not medically necessary. We have to pay out of pocket with Blue Cross and the Axumin costs $5800 in our area. I hope your insurance isn’t as clueless as ours. Still fighting!
Our docs all preferred the PSMA for next SBRT if needed.
Fantastic news like this gives hope to many people. If it kicks the can down the road for a few more years who knows what new treatments will become available in this rapidly evolving scene. Good luck to you with this.
I too had 3 spots done with SBRT almost 3 years ago along with Zytega , taxotere and Lupron. Been on a “vacation” now for about 9 months and so far so good. My dr says he’s seen multiple long term remissions for ogliometastic men who do that protocol including some he believes are cured. Time will tell. Good luck.
My situation in unique. I had focal chryo so I have 60% of a healthy prostate . The psma scan at UCLA along with my psa will both be needed to monitor along with other markers. I did a psma scan at the start of my vacation for a baseline to help avoid false positives. Then when my psa hit 2.0 last month it was time for a new scan. I did (at ucla) and it found zero changes plus nothing left of the three mets that I’d shot with SBRT. My CRP is steady at 0.4, nothing on my circulating tumor test and all my other markers are normal. Oh yea, on MO ‘s recommendation I’ve cut out 90% of meat and my PSA just came back at 1.4, down from 2.0.
That’s a good question better answered by those on this site wider than I. My best understanding is it looks for signs of the cancer circulating in your blood and also looks for and meaningful genetic information.
Great greatjohn, I am so so pleased to hear your news and happy for you. You deserve it we all deserve good news. Looking forward to more great news I expect it greatjohn and that's a great dog you have, what a buddy for you to have.
Fantastic news! So happy you found a new radiologist that believes he could cure you. My husband is doing a similar treatment for Ogliometastatic but no lupron or other meds. Charlie had two lesions proton SBRT beamed in August. It took 1 treatment and he had a great response. PSA is ticking up a little but much slower this time so we are going to Germany for a PSMA and will repeat if needed. Our doc also believes we have a good shot at a very long term if not permanent solution. Take care!
That's great news and I hope you get a complete and permanent remission. If remissions were given out based on merit you'd have had one a long time ago.
BTW, since I developed NEPCa, I've been occasionally seeing small wispy bits of tissue in my pee, and I think of you and your scar tissue. Happily nothing so fast has been anywhere close to big enough to stop the flow.
make sure you keep drinking lots of fluid and keep flushing "the lines"....I think that's the best you can do to avoid blockage. I've been running freely for almost 5 months now! Thank you Jesus! ! !
I am now drinking lots of fluid. Three weeks ago, when starting chemo, not so much. It hurt to urinate and my bladder could only hold a few ounces. So of course chemo was four bags of IV totaling almost 2 liters, making me head to the bathroom repeatedly.
Urinary pain is now way down and bladder capacity is up. I'm no longer scared of liquids.
If those of you who have found doctors who are believers in the treating oligometastatic pCa with radiation or in other ways, I would appreciate if you would give their names and/or locations and as many details as possible.
Believe me, those docs are few and far between and difficult to find--no matter now much doctor shopping I do and convincing efforts I have gone through. I am a believer in this type of treatment, like whack a mole, despite naysayers here and elsewhere.
John--good luck with your journey and I will be following your progress closely.
Prostate Oncology Specialists in marina Del Rey ca. Interestingly, at my second opinion appointment at ucla with Dr Drakaki, she was on board with the SBRT to my mets and recommended Dr Kishan (also at ucla ) to do the radiation treatment. That surprised me since ucla has generally been very reticent to do out of the box treatments. But they strongly believed in it and felt that the abscopal affect was real. I actually did the SBRT with dr Dr Henry Yampolsky In Beverly Hills ca.
I spoke with head of radiology at John Hopkins last year and she said they supported radiation to oligo mets and told me insurance would pay. No longer have her name or contact info.
I use DrJohn Pablo at st Joseph’s candler ‘s Lewis cancercenter In Savannah GA and in Hilton Head SC. He’s done a femur, a rib and a clavicle met with three sessions of 10 grays on each oligomet. He uses the TruBeam Linac for these kind of mets but also has a cyber knife machine in Savannah for other purposes. I’ve never had recurrence in any areas treated with IMRT or sbrt . See my profile.
I would hope that your RO will treat all pelvic lymph nodes and hit the femur with high dose sbrt. Back in 2015 I had 50 sessions (75 grays) of low dose IMRT to all my pelvic lymph nodes. Lived temporarily in Sarasota. I was told durable remission was the best to hope for.
Not to cast a pall but its unlike to be curable particularly now that it’s in a bone. But oligometastatic is a good thing ( like mine) . See my profile.
I started this trip in 2009, had the prostate removed, did radiation in 2010, was good until 2012 and then started the Lupon, and endless (so it seemed) list of palliative Androgen blockers.
I also have 2 lymph nodes involved and, just finished my second round of Taxotere Chemo. I am excited to be attacking the beast at last!!!! PSA dropped from 120 to 77 in 3 weeks, and I am tolerating this really well. My labs came back excellent.
Like you I'm just so jazzed to be taking the fight to the beast instead of hiding behind androgen blocking shields.
Praise Be! Just finished John Tesh book Relentless and his amazing faith journey. Your message is all inspiring for all of us who choose to fight this monster. I’ll follow your progress and pray for an outcome many of us dream about. Make it happen gJohn Dogs know things yours is happy for a reason.
Hey John, I hope it works well for you. I find it confusing that some docs want to do this radiation and others say that microscopic cancer is probably throughout your body already, so if we radiate it's like melting the iceberg above the ocean water. What's the difference between your situation and this iceberg example they always talk about? I asked to do what you are going to do but the MO told me it's "experimental".
Prayers to you. Also, think about the other things I've read about that increase the chances of the radiation working well. I can't remember what those things are but it would be easy to search out or re-ask through a post on this site.
One way (simplistic) to look at it, especially in the case of oligometastatics, is that it took time for those few mets to develop. If those are eliminated it will take time for new mets to develop, assuming the cancer type stays the same, thus slowing done the process.
Great John, I'm in the same situation as you. Pelvic lymph node involvement and oligometistatic. Had been just on standard of care, Lupron Plus zytiga. Change doctors and went to Mayo Clinic. Did scans there and found no cancer except in prostate and lymph nodes. Originally had some vertebrae Legions they were gone due to the Lupron and zytiga. Dr. Kwon ordered up radiation also like you. I'm starting it within the next week or so in Davenport Iowa where I live. Like you this was a pleasant surprise for me where I may see a long remission or even cure. Let's pray for both of us. Also prayers to this entire group.. hope this gives you some affirmation like it does for me.
Good news travels fast..... Congrats.... BTW can that dog play that piano that's behind him in the picture?...If so, with your experience did you teach him or is he a self taught peeanest....
Good luck with your radiation. You really get to know others in the radiation waiting room since many others have daily visits. I enjoyed the patient contact. Lets hope that this treatment kicks the bastard for good.
Until I saw your post I considered myself just marking time. I did see a radiologist this am looking to get a couple lymph nodes near my prostate done. He said they are very small so doesn’t see necessity to do yet.
I had seeds in 1991 and intermittent hormonal from 1993 until 2017 Zytega then Xtandi until last month.
I’m close to to the Deerfield Beach facility and wondered if you are going there or to Miami. Or FLL.
Thanks, I thought I wanted to do a trial (looking to help those coming behind) so got a Trump referral from VA To outside care in neighborhood but they say not anything out here. It took me too long to do my paper work. Not VA fault.
In all truthfulness I have had such a great ride there’s no regrets if I loose it now.
My best wishes to you and your great battling followers. Keep up the war we all win when one wins.
Good luck John. I’m on the same path, about 9 months ahead of you. BCR, then found the site of recurrence in a few LNs thanks to a clinical trial PSMA scan (right after an Axumin scan showed nothing). Immediately started ADT and abiraterone then RT a few months later. PSA has been undetectable since ADT/abiraterone began last January. Per direction of Dr. Zeitman at MGH I’m staying with the ADT/abiraterone through May (1 year beyond RT)...and then all treatment stops and I see where I am. Have your doctors discussed the ADT/abiraterone combo on top of the RT?
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