today is the second radiation treatme... - Advanced Prostate...

Advanced Prostate Cancer

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today is the second radiation treatment (out of 25) for what my new radiologist is calling Oligomatastic* stage 4 prostate cancer.

greatjohn profile image
75 Replies

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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Dachshundlove profile image
Dachshundlove

Greatjohn

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!

Aynoy profile image
Aynoy in reply toDachshundlove

Interesting comment. As I have questions. I’m thinking this is good because of cancer in lymph nodes and not beneficial to bone met ?

Dachshundlove profile image
Dachshundlove in reply toAynoy

Annoy:

Always get a second opinion. Doctors make their best educated guesses, that is all.

Daddybearblue profile image
Daddybearblue

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

greatjohn profile image
greatjohn in reply toDaddybearblue

he's small but FEROCIOUS...LOL. All 11 pounds of him. Thanks & Joy along the journey of life!

John

spinosa profile image
spinosa

John! That sounds great! I've got my fingers crossed, and am sending my strongest "thoughts and prayers" your way! Keep us/me posted!

HOPEFULSPOUSE profile image
HOPEFULSPOUSE

Wonderful to hear John. Hold you close in my prayers.

greatjohn profile image
greatjohn in reply toHOPEFULSPOUSE

Thanks Emily....I've been speechless since this doctor mentioned those words to me...it's a dream, but a good dream! Big hugs, John.

p.s.Thanks again for the Fenben...I've been taking it regularly Mon/Tues/Wed every week.

greatjohn profile image
greatjohn

THANKS! will do!

Kaliber profile image
Kaliber

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 . 💪💪👍👍😁😁

6357axbz profile image
6357axbz

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.

greatjohn profile image
greatjohn in reply to6357axbz

Prostate alone done first time. These 3 spots are far enough away to do it they feel.

6357axbz profile image
6357axbz in reply togreatjohn

Missed that. Thanks. Hope for us oligos

Magnus1964 profile image
Magnus1964

Good luck!!! Like that one of our own might have a chance at permanent remission.

tango65 profile image
tango65

Great to hear,!! I wish the best.

greatjohn profile image
greatjohn

THANKS ! ! ! and to you!

tallguy2 profile image
tallguy2

Awesome news. Keep it up!

keepinon profile image
keepinon

Just curious. What scan picked up your spots?

Great luck with your treatment!

greatjohn profile image
greatjohn in reply tokeepinon

Axumin pet scan

paige20180 profile image
paige20180 in reply tokeepinon

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.

greatjohn profile image
greatjohn in reply topaige20180

good luck....yes, my doctor said it might take a while for the insurance to approve...but amazingly they had approved within 8 or 9 days.

g.J.

paige20180 profile image
paige20180 in reply togreatjohn

That’s awesome! Thanks for the hope John! Keep us posted.

Karmaji profile image
Karmaji

Story of cure and remission is confusing

I ask uro,. ro, onco. No clear answer..

12months on Firmagon. T3b 18sesions of IMRT...psa from 30 to 0.03..

No symptoms whatsoever...except no libido

Should I just stop and become male again

....no risk I feel keep following PSA

Docs are not involved...with patient ...

They r stuck with protocols. ...

Any suggestion.

.

greatjohn profile image
greatjohn in reply toKarmaji

Perhaps see another doctor....or two.

TFBUNDY profile image
TFBUNDY

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.

Schwah profile image
Schwah

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.

Schwah

6357axbz profile image
6357axbz in reply toSchwah

Schwah, what PSA rise have u seen since beginning of your vacation?

Schwah profile image
Schwah in reply to6357axbz

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.

Schwah

6357axbz profile image
6357axbz in reply toSchwah

Sounds good Schwah. A durable remission or better?

What does a circulating tumor test tell you?

Schwah profile image
Schwah in reply to6357axbz

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.

Schwah

alangeorge profile image
alangeorge

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.

Inspiring for all XX

Alan

DeanNelson profile image
DeanNelson

I am so happy for you gJohn. I wish you health and happiness and the Prayer that is is indeed a cure for you.

P.S. he looks ready

paige20180 profile image
paige20180

Great John,

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!

greatjohn profile image
greatjohn in reply topaige20180

Great news

tom67inMA profile image
tom67inMA

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.

greatjohn profile image
greatjohn in reply totom67inMA

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! ! !

gJohn

p.s. good luck, of course.

tom67inMA profile image
tom67inMA in reply togreatjohn

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.

Grumpyswife profile image
Grumpyswife

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.

greatjohn profile image
greatjohn in reply toGrumpyswife

Dr. Abramowitz at University of Miami Sylvester. Radiation Oncologist.

Schwah profile image
Schwah in reply toGrumpyswife

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.

Schwah

6357axbz profile image
6357axbz in reply toGrumpyswife

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.

Srbergman profile image
Srbergman in reply toGrumpyswife

Dr. Kwon at Mayo Clinic Rochester Minnesota

Grumpyswife profile image
Grumpyswife in reply toSrbergman

Thanks everyone for the references. We have actually seen Dr. Kwon years ago and he was different then the others at Mayo at the time.

Break60 profile image
Break60 in reply toGrumpyswife

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.

Grumpyswife profile image
Grumpyswife in reply toBreak60

Thank you for that. It's not far from home for us.

Derf4223 profile image
Derf4223 in reply toGrumpyswife

Direct your MO's attention to the PEACE-1 trial whose triple therapy has become approved by insurance.

MrEd44 profile image
MrEd44

Best wishes! Also, your dog is cool.

Break60 profile image
Break60

John

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.

Good luck!

zenbee13 profile image
zenbee13

Hi Greatjohn,

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.

Peace,

Bees

rocket09 profile image
rocket09

Sounds really good John!

greatjohn profile image
greatjohn

Thanks Rocket(man) ! ! !

dadzone43 profile image
dadzone43

Elation for you.

Jvaughan0 profile image
Jvaughan0

You have an amazing zeal for life, greatjohn. It always makes me smile with its contagious hopefulness and energy.

RayF profile image
RayF

Wow! great news man! Hope it all goes as planned.

Collarpurple profile image
Collarpurple

So happy for you ❤️ Just those words that can lift your spirits and give you soo much needed hope. Thank God you were lead to this Dr

Collarpurple profile image
Collarpurple

Also what a cutie that little furbaby

Bobcat64 profile image
Bobcat64

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.

greatjohn profile image
greatjohn in reply toBobcat64

I am humbled with thanks.

monte1111 profile image
monte1111

Great news. Hope your psa drops as fast as the stock market.

ronnie1943 profile image
ronnie1943

Hi John ....So happy for this great news! They are always coming up with new treatments and more in the horizon.

Sending prayers and best wishes this new treatment gives you many many years in total remission.. 🙏

Lynn Pa.

db1966 profile image
db1966

Your treatment almost mirrors mine. I’m 10 of 28 completed. Good luck.

greatjohn profile image
greatjohn in reply todb1966

Thanks and to you as well.

GeorgeGlass profile image
GeorgeGlass

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.

George

6357axbz profile image
6357axbz in reply toGeorgeGlass

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.

Srbergman profile image
Srbergman

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.

greatjohn profile image
greatjohn in reply toSrbergman

Thanks...having hope is amazing. I wish you the best. Just your mentioning Dr. Kwon as you did makes me more confident!

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

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, Good Health and Good Humor.

j-o-h-n Friday 02/28/2020 5:01 PM EST

SPEEDYX profile image
SPEEDYX

Great News Great John!!!...Greater success maybe more MO will be proactive in recommending!!!

noirhole profile image
noirhole

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.

Longtimer29yrs

greatjohn profile image
greatjohn

I go to both places. My oncologist is Dr.Sharma and Dr.Abramowitz.

in reply togreatjohn

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.

LTimer.

RonnyBaby profile image
RonnyBaby

There is still hope and possibilities.

Nevertheless, you've made it this far with prospects moving forward that are encouraging.

I guess it is best to not get our hopes too high, but we are human after all.

May the healing continue and may God bless you on your journey.

Thankfully, there is more happening on the treatment front(s).

Dam! Good luck greatjohn! 💪

shueswim profile image
shueswim

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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