Me - G9 - regional - RP 2/2017 - SRT and ADT may thru 10/31/2017 - Lupron the entire yr - zero PSA - 40 hits of IMRT. age at dx 65 now 67...svi was there as well.
Last two PSAs within the past month were .19 and .25 ---- RO and MO now want Axumin Scan.
I certainly see the potential benefits vs bone and reg CT scans, but at what level of PSAs do u bring in Axumin? There has to be criteria, but what is it?... A dark room lighting up when I enter it due to all the radiation I have been exposed too --- is this possibly a case of ' overtreatment ' ?
I was shocked to get the call and no clinical person to explain more about why, benefits, risks, etc -- I have calls into them -- Feel blindly going into a test without knowing, what would be the next step is not in my best interest. I am however with SMK, but the number one advocate for me is ME. Met the MO - nice guy as was the RO but I would expect a bit more and will get answers b4 the test - I can just see, it has an incidental findings, that isn t a big deal and I worry more - no way.
It appears from the call I got from the RO office, all BCRs are now going to get this new scan.
Thoughts and NIC documentation would help me - I can't go on worrying month to month - that's no way to live..
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Hi fish - that is my concern - do at test at .25 --- 6 months later another PSA at 1.0 and it could show more --- there has to be criteria, I'll find it - I m in the us --approved by Medicare already... sometimes, I feel once they have their claws in u, u stay there as long as they can hold on. Sounds distrustful - but that is me --- this is a HUGE revenue stream for PCa and other cancers...thanks for ur comments...
While the auxumin scan is not as sensitive at lower numbers, above 2 it is considered accurate...I had mine near 3 and felt confident that the 1 lesion found was it at that time.....had Lupron and Zytiga within 2 weeks of my scan...the problem is circulating tumor cells and microscopic metastasis... The beast is evil, insidious, and can hide in the body for years... Here is the auxumin link for efficacy:
I think they want to do it now for $....the chance of detection below 1.75 is not as accurate....the PSMA scan has about 50% or so accuracy according to the asco info I posted at the level you are at....the auxumin is less....maybe try to get into the PSMA trial....based on your PSA scores, I am guessing in about 3 months you would qualify for a free scan if you qualify... contact the people in the NCI trial and talk to them....I believe it is page 10,or 11 at the site below:
your life, your choice... Wouldn't want to do it now and come up empty handed....talk to the RO and express your knowledge and concern....see what they say... Good luck
Fish -- Thanks for the advice and I believe u get my point --- it appears my RO wants this to be the SOcare after BCR - I certainly see the benefits but there must be some PSA point along with other criteria to use the scan. that the test is used - u a 3 or me at .25/.19? I ll find out... My RO is good and I'm lucky enough to be at MSK - can t get much better. But they owe all patients answerers to questions - I m not getting them so far. I had the whole route - RP - SRT - ADT ( fun that was ) and I see u did too, at least on the Lupron. Did u have any primary treatment like an RP or just the meds? How well does one tolerate Zytiga.
The net I see here is they got u on meds sooner on the new scan vs a CT or bone scan yrs later - sounds mean, but they increase their revenue stream by several yrs - the traditional scanning might have never picked this up or it might have been 8 to 10 yrs later with the old technology. I understand is the median time for mets to show up under the older scanning is 8 to 10 yrs.
I wish u the best - hope u get off the meds at some point if it is a mayor QOL issue for u - I somehow managed but it was challenging for sure.
Man, I do all fishing except fly...I tried, just wasn't that good at it... several guys on the forum fish....Nalakrats sent a picture from Ormund Beach in FLA with his surf rods.....I have 2 surf rods myself.....Do more freshwater...like to catch walleye and invite them to dinner.. LOL.......as far as meds, I am on Zytiga with Lupron, and except for the hot flashes 3-4 x/day, I am tolerating it ok...They put me on it d/t bone met and the advantage that it seems to provide in slowing down castrate resistance... My MO says he has a guy who has been on it for like 6 years and no resistance...still doing well... I am hopeful I will be undetectable next visit on my PSA...changed my diet, etc...exercise daily...some guys have been here for more than 10 years...some closer to 20...
Ask for answers....it is your right as a patient.....Don't take no for an answer....
hey Fish -- hope u r feeling well ---- I was on Lupron and it was hard, but how is Zytiga make u feel? Does is cost much? I have a medicare advantage plan. here in NY getting slammed with snow - heading to Fl very soon...
Feeling ok....See my MO in 1 1/2 weeks...will see how I'm doing then...just finished moving 2-3" of snow off the drivemay and getting the car cleaned off...supposed to be down to -19 C here without wind chill....more like 30 below tonight...the zytiga just gives me hot flashes so far, some people have fatigue but it hasn't bothered me...... Zytiga costs between $3,200 and $4,000 for a 30 day supply.... Head to FLA... walk on the beach, enjoy the sunshine, fish, and enjoy life...Hope you are feeling well....stay warm, brother...
As far as treatment--I had one bone met, and did stereotactic radiation (insurance covered it), and while the SABR-COMET trial only looked at 16 patients with various cancers, prostate cancer was one of them...There is an NCI trial for oligo metastatic disease (<5 lesions) at the address below:
The reason they are doing the trial is to confirm what was found on SABR-COMET, and while it has not been proven conclusively in some people's mind, I am glad I did it...removes tumor burden....
I have real skin in the game....I am betting my life....some on this board have been cured and the only skin they have in the game is their wallet...take all advice with a grain of salt...... listen to your team, and listen to your loved ones, and listen to your head and heart...
Hello Fish - love the name --- I started to respond to ur chat but lost my place.... Maybe u got something from me...if not, here it is...
From the beginning, me joining, about a month ago I was somewhat hesitant about TA.. Perhaps his tone in answers to my posts - there was something there but didn t and probably still don't fully why......
I lost the chat u sent me could u resend via a chat. I really appreciate hearing what u had to say --- I am an extremely private person when it comes to PHI, but here I can open up here - we are all brothers --- ur input has the most valuable to me --- would be cool if we lived near each other --- I m in Rhinebeck NY. Very kind of u and I wish nothing but the best for you!!!
Is there a way to private chat? I m a 67 yrs old guy and have been blessed. This fricking thing will not beat u or me - we r fisherman!!!!!
Sent it again... I didn't get your reply, but use the chat to respond...I live in WV near Ohio...there is a gentleman on the forum who lives in upstate NY who fishes in the St Lawrence River...I may go try to fish with him at some point...looks like you're near Poughkeepsie area, so the ocean is close...who knows, maybe we can meet somewhere....spring/summer fishing....I'm game.... As for TA, he is a patient advocate who has been involved in publishing some research. He will tell you standard of care, but he can not definitively tell you there is no benefit in stereotactic radiation for oligometastatic disease since the study is not done...He gave me a hard time because I posted about SABR-COMET, and the evidence is not fully in....the question becomes then if it is damaging vs leaving the cancer there. He also can not definitively tell you if there is benefit since the study is not completed...There is some evidence that post radiation cancer treatments may result in T cell activation which pays an additional benefit against the cancer. Interesting note, according to my reading, TA was cured using SBRT......In my mind, he is like the Tin Woodsman... We are under a death sentence, and must decide for ourselves the treatment path. I have been in 1 clinical trial and looking at others.
There are clinical trials for psma scans. The one at NIH is free and requires a psa of 0.5 or higher. If interested search clinicaltrials.gov for 18F DCFPyl and prostate cancer.
Treat if possible but my question, is really when is the best time to take this scan - how much radiation can a body take? They do now and find nothing- 1 yr, PSA is 3.5 - what then? If Medicare is paying for this they have to have established guidelines for it to be used, Or worse yet, limit the testing of it to one, maybe two --- this has happened to me a cat scans to my back. The Dr. somehow reworked the requested and it was approved..
TA - we know u r a SME -- but some of your terms I ( we ) are not familiar with.... read my question again and tell me why based on PSA only, why would it be be good to take the test at .25 - when the mfg suggest waiting till 1.0?
So was she - however, if that makes you feel better please believe in that - I too believe in that even where I am. - btw - what is ur definition of cured? I mean no disrespect and appreciate your ability to provide help to others, that includes me.
btw - during my RT in 2017, meet a guy that was nadir for 12 yrs, but he was also next in line for RT in the treatment room.
I have no evidence of disease 8 years after treatment. As far as I'm concerned, I'm cured. I've known many men who have been cured over their entire lifetime. There's no evidence (other than random anecdotes) that it is incurable.
That's great TA and even greater if u feel 8 yrs zero is the definition - the guy I meet was 12 yrs - he felt cured/great as well --- I was totally shocked that he was still looking at his PSA with NO symptoms- I wish u well TA - u r an asset to us..
Living by random anecdotes is no way to live, imho. You glom onto failure stories because of your anxiety and the availability heuristic, and then look for more failure stories because of confirmation bias. I urge you to break this cycle - it does nothing to help you.
the way I my Dr. sees it ' the person is in ' remission ' the longer the better - when they use the 1 5 10 stats it really means ' remission' .
' like in so many ' random anecdotes ' cases and they are many - we only hear about friends and celebs having a recurrence - If I was 8 yrs at zero, I would proclaim ' cured ' too and have a party. There may be microscopic collections of cancer cells anywhere in the body, that will or would have never be detected until new tech and ways to find it are created - hence 'Azumin ' --- it can find these cells much earlier the conventional scans of today. By doing so, earlier treatment is possible - but the question is at what cost and I don't just mean $$, meds and their impacts on QOL. All that revenue flows to the health industry and of corse benefits to some/most people - if qol is not impacted greatly ( my opinion only ) that's great but if it does and there are significant other factors I might choose another path. Congrats on 8 - I wish u many, many more.
Doctors are in a different situation from patients. The term THEY should use for me is -no evidence of disease. Remission means the cancer is still there.
I am in the process of getting into the 18F at NIH. I am at .5 now after RP&SRT. Just from common sense, no clinical trials, no research: the cancer is already there, while you treat it with targeted therapy, there are others you can’t see, so ADT must start. This is my feelings and ofcourse I can be totally wrong. now, how about the cancer burden, you might lessen it by targeted therapy a bit, may be. It’s a very complicated situation and can’t fibd the optimum answer for it. Very frustrated
ADT will certainly help. As for metastasis-directed therapy - jury is still out as to whether there is any long-term benefit. If it is safe to do, and there are only a few, why not? But safety is important. In a recent clinical trial (SABR-COMET), 5% of people died as a direct result of SBRT to their oligometastases, and 30% suffered serious side effects from it.
Thanks TA, but this is a very scary statistics. Do you think most doctors will be responsible enough not to do it if a slight danger exists or some will take a chance? I know it’s hard question to answer
I can share an anecdote with you. A man in my support group with several mets was convinced that SBRT was the way to go. He went to see my RO who told him that he would treat only one of the mets, but the others were abdominal and vital organs would be exposed -- he refused to treat those. He found another RO in private practice who agreed to treat them. Within a month of treatment, he had more metastases - the treatment did nothing for him and exposed him to risk.
I think there's a better chance that doctors at large teaching hospitals are less apt to take a risk - they are usually not in it for the money.
I was similar. GS9, T3bN0M0. RP, AdjEBRT, ADT. CRPC: PSA increased to 0.3 over 7mo. Got a PSMA scan against RO advice (as sensitivity <0.5 at this PSA). Dx local soft tissue foci (no bone or LN mets) that I have been treating since. Privately funded. Go for it as per RO, MO if you can, $. Cheers, Rob
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