First, thanks to all of you for your input - Fish, George 71, Nalakrats and everyone else. I have six Mets that are clearly defined on my scans.
One on each hip bone, two on my spine and one each on a rib. I too am very interested in radiation treatments to see if we can get rid of these mets. I am currently only on casodex not any form of ADT
What does everybody think? Should I have these done before going on ADT or go on ADT first. My PSA has been very steady at 1.5 the last 6 months. never any higher than that since on casodex for 6 years.
I had stereotactic radiation on one lytic bone lesion---on my clavicle--- while on ADT---PSA prior to radiation was .23--2 weeks before tx-- The lesion was revealed on Axumin scan with PSA of about 3 --1 month before...I have f/u next month post treatment...
There is a COMET-10 trial which is supposed to happen but I don't know when...try google it....Treating up to 10 lesions....The SABR-COMET trial for oligometastatic disease has resulted in multiple trials for oligometastatic disease--see below on page 4
A certain poster here will say there is no proven value to stereotactic radiation treatments---not proven in phase 3... I think Dr Heron of UPMC might disagree---see study below:
I got on ADT right away when I found out the beast was back and got treated later---I preferred to push back on the cancer and then hit it with radiation--will post my f/u results.
You may wish to message TWTJr--a poster here who is a retired Radiologist--19 year battle with the beast--about 6 years ago--he had radiation to 6 lesions--similar description to yours--being a retired Radiologist and person treated/survivor--he can give you his opinion/ feedback on start ADT, radiation treatment--which one first, etc...
We are all on this hell ship together...warriors in the same battle--glad to be of assistance--I do advise contacting TWTJr--nice guy and he had radiation twice in his 19 year battle...I will post my results after f/u at UPMC next month...best of luck
It seems that there is a survival benefit in patients with 5 or less metastases. There are planning a new study treating patients with up to 10 metastases.
I did not want to scare you, just indicate that mets on the bone scan are just a part of the ones that are present. So if you radiate the ones you see with a bone scan you just address the biggest ones. How much this will help I do not know.
On the image the mets are just the small black spots. The big black areas are healthy organs that also show up in a PSMA PET/CT.
Thanks
One hell of a situation tce.. unless your Dr has given you a reason not to trust I’d go with his or her professional advice. I’m surpised that you’re not already on adt.. if doc suggests start both now . I’d follow it. Hit this with a sledge hammer if you need to. Invest in hope..push that sucker down and keep it running. It’s all about jumping hurdles , when APC says jump , we say how high. If we don’t ride it’s back and try to slow it’s roll ,it will make quick work of us. I say throw the kitchen sink at it and see what sticks.. Good luck tce, youll do the right thing. Keep jumping .. Scott
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Thanks Scott - Are you on Lupron?
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I was until the orch. On test adt drug tak -700 until failure..
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How is your PSA
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What Psa? I’m kidding 31/2 yrs .04... but that also put me with T =3 or almost zero T baby. It’s a walk on the wild side.
Agreed...someone should devise and test a rotating trials involving newer and newer evolving therapies...like a course of antibiotics if the drug doesn’t knock the sh!t out of the cancer burden in two weeks try something else. My PSA dropped from 912 to .12 in a month but we all know that’s just the start of the long battle. Good results don’t mean we can relax...we have to get every last remaining malignant clone...and then prepare the environment for eutrophication....better both at once.
here is one easy add on - kills circulating cancer stem cells - My dermatologist prescribes it for acne and rosea -- said people take Doxy for years -- very safe.
And....while I’m still on my pulpit...why don’t we have a universally accreting PC liquid biopsy array...we all dump much of our hopes in big Pharma’s lap...but if the WHO were to reach out to all participating nations to fund such a project...it would stand as a model for all cancers efficient detection and treatment.
I think most would agree that a year or so from now the F18 DCFPyL PSMA Pet Scan will be SOC for detecting mets. Having had this scan on a trial at NIH I can attest to it's sensitivity. I had 2 bone scans, 2 conventional CT scans and and 1 MRI with endorectal coil that found 0 mets 30 days prior to the PSMA Scan. Then the F18 DCFPyL Scan lit up a pelvic lymph node that was biopsied and found to be PCa.
I have now started ADT and will have all of the pelvic nodes radiated in 30 days or so and will continue on ADT for 24 months.
The reason for this decision was to kill the met found on the scan and the micro mets in the other nodes that cant be seen by any scan. The ADT will help the effectiveness of the radiation and will systemically treat the rest of the micro mets in my body. I could have just done radiation but that would allow the cancer to grow that is located outside of the radiation field. My RO and MO are fully on board with and agree with this decision.
Having related this information my point is if you look at the image that GP24 posted (and the point of that comparison) earlier in this string it stands to reason that a more systemic approach may be warranted in the case of multiple mets.
You might discuss hitting this with ADT, followed by radiation to the mets and then Docetaxel (chemo). May not be possible but if it were me this might be the treatment question I would ask.
We found three nodes on an auxumin scan last fall when the other scans and 3t MRI showed nothing. Was it hard for you to find someone who would radiate your nodes? Our ur thinks it is pointless. I think it's time for an oncologist.
My MO here at the Mayo Phoenix says it only helps with bone pain.
Another Doctor at Mayo says radiation can be curative.
I do not know who to believe.
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Tce if you can talk to Dr. Paraminder Singh at Mayo in Scottsdale , he’s the pc specialist that made the right calls for me. A great man.
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I go to Dr. Brice at Mayo Phoenix. I think it might be hard to change??
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Is Brice a pc specialist ? If not ... Singh is.. maybe a consult ... good news is that you’re at mayo .. Singh stepped up to Mayo from U of A medical center here in Tucson . You’re in good hands .. Take care tce
My RO at John's Hopkins wants to radiate the pelvic node and start ADT. He thinks if not curative it will definitely push things out in the future. I need think it is far from pointless but an MO will have his side of treatment that may lead him/het to think this way.
I would definitely consult with a well qualified RO.
Hey Moespy , if your Dr recommends RT and adt , I’d do it. I did both together. It can throw you for a loop but it can push PC down well.
Unless a guy is ready to cash it in . Doing nothing with an aggressive APC is fatal . Until I lose the will to live I’ll do whatever poison given to stall the pc. Enjoy life
Something to think about....you got rid of the mother ship(prostate)-- you can think about eliminating the rest....The cost is $80,000 for stereotactic radiation--if you qualify for the trial, it's free...
No chemo (docetaxal) but have asked for Zytiga (abirsterone) which according to the Stampede Trial would be the early treatnent with fewer than 3 mets. If I had 5 or more mets I would then ask for chemo.
My MO is not ready to give me Zytiga at this time, saving it for the future.
I look forward to hearing what your MO and RO say.
I myself am being radiated for 4 nodes and 1 sternum met. So, naturallt it is my belief that radiating distant mets is beneficial. My doctors from MD Anderson, Cleveland Clinic, and a European teaching hospital agree that reducing tumor burden is beneficial. Nobody says "cure" but benificial nonetheless.
When I had bone mets on my spine and ribs I had cryoablasion done at Mayo Rochester. I read much about it being done here but it worked great for me.
And I’m no oncologist but why not get on ADT right away? Like someone else mentioned, those mets could be the top of the iceberg. Like my Dr told me, hit it like a nuclear bomb on a dandelion. What do you gain by waiting.
I don’t understand why guys use just casodex . I’ve had mets radiated three separate times ( see profile) but also went on ADT3. No recurrence in any areas radiated. It’s controversial to radiate but so far it’s worked for me. If you can see mets there are millions you can’t see. You need a rifle and a shotgun.
Tough decision but I believe it is time and so do the doctors.
Don't you also recommend Avodart and metformin?
Does it help?
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It’s one hec of a club.. welcome aboard.. strap in amigo .... it a hell of a ride.... much luck ..and many prayers ...a new way of living , takes some acceptance ... but you can do it just like most of us already have.. enjoy whatever you can in life..
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Thanks Lulu
Are you glad you got your jewels removed?
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Just Glad to be alive. Minus juevos a small price to pay . It’s not like i didn’t get my money out of those pups in the 40 odd yrs since puberty . It’s wierdly liberating for me to let go off my macho bs that drove my life into the dust .. happiness is where we find it. Hope you finding some in the storm too . Peace
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So do you have to still be on Lupron?
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No more Lupron since 9-16 orch.still on a test adt that targets adrenal T ....
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Did dr. Sing at Mayo get you that medicine
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Yes, he was in charge of the test. It failed for most and is terminated. I’m
On until failure.. They still provide it to me.
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Good luck - would Lupron help?
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I did Lupron until orch . That was the point no more Lupron. Whatever I’ve done I’ve been clear over 3yrs. The Lupron did work.. I’m happy not to being shot up anymore. Never liked shots ..
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Thanks Lulu. Get my 3 month shot on 3-4-19
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I got my first and only firmagon shot and my dx on Friday the 13th 3-15 . Then Lupron shots til orch. Plus being that I was also on the test drug .Who knows what side effects are from which. ? I had built a Great Wall,by 53 of invincible macho thinking. I had a great fall. Still feel a bit like Humpty Dumpty ... all the kings horses and all the kings me , couldn’t put humpty dumpty back together again . My chemistry is held together by bailing wire . I’m doing the humpty dance with APC and adt in a war of attrition. Make the most of every day not in brutal pain . Lupron can throw us for a loop . Even make ya a bit loopy , but if it’s your best bet to live . It’s not really a hard decision . Mine was life or death . The alternative is not good. I think once stage four we all take this with us to the bitter end . Have fun and enjoy what you may alone the way . I’m being frank . APC & adt are mental and physical misery . I’m getting much better after yrs of strughle with self and the world . If one is lucky to get by this round with APC . He cant ever rest on his laurels and say “ I’m cured” My dr. Not APC specialist . A fine man . Said “ you’re cured” to me..My blood has been so good . He’s a hemotolagist onocologist.. not a pc .. but as you read these pages of HU like I have for two years now you will realize it’s a new path of life.... no easy fixes ... I say do more than these dam medical drs tell you to do for yourself .. for me that meant diet nutrition and exercise . Whatever they say . Do better than that .. if we extend our stay long enough , who knows? A real solution might evolve. “ There are lies, dam lies , and stats” Mark Twain ... live healthier than ever before and be happy with life.. or there is no point to any of this. Sorry to babble .. keep investing in tce and heal thyself. . peace...
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You are the best Lulu. So appreciate your condor.
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I appreciate life more now each day . Tce you’ve entered the twilight zone. This isn’t the end for you , it’s a twist in the road for sure . Time to start building the new path.. forget about the past , and the future , live for today and love and be loved . Be kind to everybody . I experienced road rage like emotions with no T.. being cool and collect might help any of us live longer . Cut all external stressors ..
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Your are correct LuLu - thanks for the kind words.
Ask your doctor to prescribe something to help with the hot flashes and sweats that are almost a certainty with ADT. I have been on ADT since first diagnosis in 2012 and use the generic venlafaxine. This antidepressant has a nice feature of eliminating about 95% of the sweats.
No definitive proof of improved longevity, as of yet, but as more and more studies being reported, I believe they will ultimately show some benefit, and great benefit in a few. The concept of reduced tumor load may be valid, as well as the concept of radiation and subsequent cell death inducing a beneficial immune response also may play a part. I had 6 lesions treated a number of years ago, and all irradiated lesions remain "cold." Of course, my data is anecdotal, implying no proof, but knowing the course I have had, to me the treatment likely was beneficial.
Thank you TWTJr -you are highly recommended to me by George 71 and the Fish. I have watched lectures by Eugene Kwon at Mayo Rochester and he is a big proponent of radiate the mets as a curative rather than just palliative solution. I live in Scottsdale and my MO at Mayo Phoenix says the only reason is for bone pain. I am going to ask for a consult with a RO. I guess you have been fighting this disease for many years and I have for 17. My MO says I am "Lucky" because my PSA is onlt 1.5 and I have only been on Cassodex. This week I am going to get my first ADT shot. Had a shot 17 years ago after surgery and before radiation. Really do not like the side effects. Are you on ADT? What is your secret?
Yes, I will confirm that if you go for stereo Rx, insist on therapeutic, not palliative dose. However, you may need to work with your therapist and complain of pain, any at all, with insurance covering the treatment a complicating aspect. Working with radiotherapist and insurance may get reimbursement.
short for stereotactic radiotherapy, which is a focused radiotherapy to a relatively small region as opposed to a broad field of radiation. It is completed by moving the radiotherapy tube during treatment, guided by computer control.
A day to remember.... you’ll get in touch with your feminine side for sure. 4 yrs for me on adt ..it’s a party... you’ll handle it... not without side effects, but you’ll handle those too. Treatment I see as us Paying our dues to extend life ..
You say you are on Casodex, so you are already on ADT without realizing it. Casodex is one of the earliest version of ADT. So I think you simply mean that you haven't started Lupron yet. Just an FYI in case you are resisting ADT for fear of the side effects. Casodex has many of the same SEs.
I have been on Lupron for over 3 years. Added Casodex for a year until it stopped working. Now I'm on Apalutamide too. I have lots of the side effects but they are not too bad for me and I can function just fine. They are kind of a minor annoyance now that I have reconciled myself to never having another erection. Since I don't have much of a sex drive anyway, it's not such a big deal.
"Stopped working" means that even while I was on it, my PSA started to rise again. So I moved on to Apalutamide (aka Erleada). That is a new drug which was approved for non-metastatic, castrate-resistant disease. As of right now, although I have PSA, so I know that cancer is still there, the volume of cancer is so low that we can't find it yet with current available scans. Current PSA is 0.23.
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ADT & Mets
Incredible loss of strength on limited ADT 
update on husbands radiation to pelvic mets
bone mets
