I recently had a PSMA GA-68 scan at the University of Iowa. Here are the results....
"Multiple lymph nodes with increased uptake in the left retroperitoneal and pelvic lymph nodes, starting in the left para-aortic nodes at the L3 level, extending inferiorly to involve left common iliac, left obturator and external iliac lymph nodes, consistant with metastatic disease. No abnormal uptake in the prostate bed. No abnormal uptake elswhere in the body. No scierotic or lytic osseous lesions."
My oncologist said I might find a radiation oncologist that would agree to radiate, but he would advise against it. I am assuming that is due to the risk of radiation to the para aortic chain, or maybe because so many nodes are involved. So it looks like chemo or back on some sort of ADT if I can find an ADT treatment that doesnt aggravate my existing heart problems.
Thanks for your input and suggestions
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If they do not state exacly which lymph nodes are affected and how many there are, you can only continue with systemic therapy. "Multiple" usually means, more mets than can be radiated.
Up to ten mets could be radiated within this trial:
I thought it might be because of the number of nodes involved. Was hoping radiation might be an option, but I guess its going to be ADT and chemo. The problem I have had with ADT is adverse affects to the heart. I have been on an ADT vacation because I was confident, if I didnt stop, a big heart attack was coming.
I made an appointment with the RO and had him explain to me what he found on his computer screen. Then he made printouts showing the lesions he found and I took them along to the radiation clinic. You need to explain to him that you need that for the SBRT radiation. Usually you get radiation for up to five mets with the exception of the trial I mentioned, which is done in Canada.
Here is a trial which shows that patients with cardiovascular risks had fewer problems on ADT with an Antiandrogen compared with Lupron: pubmed.ncbi.nlm.nih.gov/311...
So in your case I would use Degarelix or the new Relugolix tablets.
Yes, I was on Firmagon and eligard for about 3 yrs. I started with the eligard and began noticing cardiac events within a a few weeks. We switched to Firmagon, but over time, the cardiac SEs only got worse...... the inclusion of Xtandi was when things really got bad...... would love to try the new Reluglix pills rather than the Formagon injections because the pillss have a very short half life, and if there is a cardiac problem, I can stop taking them and should see cardiac improvement very quickly, compared to having to wait a monthe for the Firmagon to wear off. I am going to push for treatment with Reluglix combined with either Casodex, or Xtandi, and hope that it doesnt kill me with a massive heart attack.
I am afraid Xtandi and Relugolix will work very similar to what you experienced in the past. I do not think you need to add anything to Relugolix at the moment, just see how it works for you.
I suggest you talk to an RO. The new pelvic radiation consensus treatment guidelines say that most would treat as high as the common iliacs or the aortic bifurcation, some would treat the paraaortic as well. My friend had 10 treatments to the entire paraaortic chain and a boost dose to those specifically identified by a PET scan. I have no idea if it improved his survival, but he didn't suffer any ill effects from the radiation.
Thats the thing..... I am willing to give radiation a try , if its even possible in my case, but only if there is some survival benifit in doing so. Otherwise, what would be the point in taking the risks that come with RT?
You might contact Dr Dattoli in Sarasota FL. for a free phone consultation. He radiated successfully all of my pelvic lymph nodes even though I had only two suspicious iliac nodes. At the time (2015) he wasn’t using SBRT and given all the adjacent organs he used low dose (1.5 grays) IMRT in 50 fractions totaling 70 grays.
My RO at MDA radiated my entire para-aortic string with 28 sessions of radiation, which I assume was IMRT. He never hesitated or expressed any concerns in doing so. No noticeable SEs.
5 days/week. I had weekends off. I don’t know what the results are. I assume the cancer there has been eradicated. I get bone and CT scans in March but I think that will only confirm that the SBRT I received at the same time to 3 bone mets (two ribs and a pelvic) worked. The para-aortic lesions only showed up on a GA68 PSMA CT scan.
As has been said here before we are all clinical trials of one. There is no cure yet for our advanced PCa. No proof that metastices directed radiation treatment helps but I like to be doing something beyond what we already know does not work. I like knowing that the mets I do have are gone.
There is new, very experimental, way for targeted lymphadenectomy (surgery). Technical University of Munich has developed a probe atttachable to the robotic gear that can detect the presence of the PSMA's radio ligand. The patient receives the latter just prior to the procedure and the surgeon gets a visual and audible guidance as it comes close to affected tissue, so knows what to resect.
Don't know exactly what kind of problems you've been having with your heart. Perhaps it's time to touch base with your "plumbing" and "electrical" cardiologist(s) again? Anecdotally, I started getting some type of Afib after my first few years on ADT. Now some heart-related daily pills are keeping those disturbing cardiac rhythm episodes and symptoms pretty much under control.
The cardiologist I now have as a result of all the ADT related heart isues (tachycardia, skipped beats, irregular rhythm, PACs...etc) has me on about 5 differnt drugs. They seem to be working, but havent been on ADT for about a year. The biggest concern is the 70% blockage we found in the LAD at the widow maker area. Its not in a good place for a stent, so I was told if it gets worse, we will do a bypass. Just trying to not check out with a heart attack in the process of treating the PC
If you went for a PSMA scan why wouldn’t you want to pursue targeted radionuclide therapy with Lu 177? You would have to go outside the United States as we are so behind with this therapy.
I understand that travel is difficult due to the pandemic, and even if I could make it to Germany or Australia, Im not sure I could afford the treatments, I hear that multiple treatments are often required, and they are very pricey, and of course not covered by insurance...
Yeah I hear you for sure. There are cheaper countries than Germany and Australia sure but in the end it will put a dent in your savings. Some like Austria are insanely expensive. I am hopefully heading to Israel for Lu 177 therapy but still need that PSMA PET CT first which I will do there. My insurance here refused to pay for one I was scheduled at UCSF despite it being “FDA approved”. Was curious if your insurance picked up yours?
No, I was told it will be a while before the insurance companies get on board even tho its FDA approved. Mine was $2100 at the Univ of Iowa, which was about $1000 cheaper than the ones I have heard of in CA
Ok I paid close to 2100 for the PSMA scan at UCLA . I am leaving for India for my last Lu-177 infusion...the hospital is about 6K a little less then you add in hotel and air...
In my opinion your pathology is a perfect candidate for Lu177 therapy, The best results to date that I am aware of (in over 1000 patients with GenesisCare) is that early treatment of PC in soft tissue lesions is where it is most successful. I had 4x treatments in 2017 that was successful for clearing 6 oligometastatic lesions but not one. In 2020 2x treatments of my pelvic bone metastases were not successful. Difficult with travel restrictions too and expensive, even in Australia.
I was reading about a lot of the guys on here trying Lu 177 as a last ditch effort. You are suggesting to try it earlier. Is there a post/discussion on this sight that discusses this idea more in depth?
Then why do a PSMA scan? Lu 177 binds to the exact same site so you would know exactly what your therapy will be doing. PSMA scans are nice for those with a lot money who just need to know if standard imaging is missing something. I don’t know your tumor burden but if you just want the “best imaging technique” to know about whether you have some tumors hiding then 2 of the F18 scans (not Axium) were found to be superior in several studies. PSMA is geared towards Theranostics and not just diagnostics but in the end it is up to you.
Personally if Lu 177 was readily available in the USA (not those damn clinical trials) I would chose it first for stage 4 disease over chemo or ADT or external beam radiation 100%. My theory is that insurance will not pay for it unless 2 ADT agents and chemotherapy was given first and failed. This is NOT what the rest of the world is doing and is just another example of big pharma thinking about their bottom line instead of us.
I would do LU 177 in a minute if international travel wasn’t such a problem right now, and if I had an extra $60000 -$80000 laying around .... would be handy if it was available in US
Yes for sure. This is my last attempt to get comfort. The mean increase in survival is 16 months which is way better than any chemo. The cost sucks and I want to leave my wife a “healthy” estate when I am gone but she is refusing and want me to spend our savings on this therapy.
In my opinion your pathology is a perfect candidate for Lu177 therapy, The best results to date that I am aware of (in over 1000 patients with GenesisCare) is that early treatment of PC in soft tissue lesions is where it is most successful. I had 4x treatments in 2017 that was successful for clearing 6 oligometastatic lesions but not one. In 2020 2x treatments of my pelvic bone metastases were not successful. Difficult with travel restrictions too and expensive, even in Australia. R
where do you go for this treatment? India, Germany? I understand that the FDA sucks in America but what is the reasoning for LU177 not being used in America since so many people think it's very effective? Is there any word on when Australia and the U.S. will be approving LU177?
My Lu177 treatment was in Australia (2017) and New Zealand (2020). Australia has approved it since 2016 where it has been available privately with GenesisCare. Some of the earlier work with monoclonal antibodies was carried out in the US., but most of the initial development of the peptides used to attach to Lu177 has occurred in Germany. And this has lead to this breakthrough which has been further developed in Australia and made available in other countries; NZ, India, Asia etc. Having worked as a scientist in the US myself I am aware of the parochialism that can occur between countries/continents. I imagine it will get approval soonish in the US. It has not been magic for me; limited efficacy.
Joe, I'm in the sauna right now so I can't put a there are response to you but I'd like to say a couple things there are some natural approaches that you might want to look into that they did at the NIH is study using taurine twice a day for people with heart problems arrhythmias and that kind of thing and the results were very positive. In one group in the study they included L-Arginine which helped even a little bit more. I had to try some earlier this year cuz I started to have arrhythmia after I took Levaquin antibiotic for a virus. I was having a lot of skiped beats. I also take proline and lysine combination everyday twice a day as well. Certainly don't take my word for any of this stuff go ahead and look up a taurine NIH study and talk your doctor about it.
Additionally I'd like to talk to you about the pet Scan you got and what do you think it was a good idea to get it cuz they're recommending I get another one and I told them what's the point unless you're going to use it to do some kind of a radiation treatment or something. I want to be at your thoughts on that. Be well,
Thanks for the advice, Ill check into it. The reason I wanted the PSMA is because the conventional scans had failed to show anything, which was very odd considering my PSA after RP was still at 11.00. I am also hoping it can guides either radiation, or possibly even surgery to get the positive nodes. So the scan definately stisfied my need to know where the cancer is (and where it isnt), but rather it will influence the treatment I get isnt known yet. Hoping to meet with the radiation onc soon. So far my onc and my urolgist both think radiation or surgery would be dicey.
It's not totally unusual. My PSA was 38 after failed radiation treatments and the CT scans didnt show anything, even the PSMA PET I did in 2016 with the 38 PSA, didnt show much. They said inconclusively that it looks like 2 hot spots - one on the abdominal aorta lymph node and another in the vicinity of the prostate. I dont remember the technical wording on that. The problem I had was that nobody seemed interested in trying radiation on those spots so I havent tried anything other than lupron. I think it boils down to a guessing game and when they try to target, things can get better or they can get worse. I don't hear a lot of people on here being big advocates to try targeting those locations. There is a guy on here that had radiation done to his aortic lymph nodes. I just cant remember which post it was in. I was within the last month.
hi George ... if you very very thoroughly research the entire Envita website; as i have done, you will be able to decide what they might be able to do for you and how it works ... as i have done, you might also telephone them and speak with one of their patient-care coordinators; it's a toll-free phone-call ... it is customized care tailored to the individual patient and their specific health situation ... they specialize in healing stage 3 and stage 4 cancers ... live outside of the US so travel to there is a challenge
OK, I always like talking to people that have tried and had success at treatment centers. Those places can be very out of pocket expensive and possibly not do any good at all.
I too had PLNs light up on Ga-PSMA scan. No mets elsewhere. Sent the CD to my local RO, a consultant RO at OHSU and to Theranostics Australia to review. All three said to do the full pelvic lymph node field (IMRT) with boost dose to the identified avid nodes. So even the Lu-PSMA doc in AU thought it would be the best approach. Did 6 mo ADT with it (Firmagon and estradiol patches). Now I am a year out and off all PC meds with PSA <0.1 and drifting lower while T recovers. So it seems to have been a very good course of action. Lu-PSMA is still an option for the future if needed. So I second T_A’s advice.
Mine were pelvic only. But they can look at the anatomy on the scans and fuse the images with CT scan and get a good sense of targetability and nearby organs at risk. Must use a facility that has state of the art radiation systems. That’s why I did a consult at a center for excellence who said my local cancer center and RO were quite capable and top shelf. So I could do the treatments without traveling for an extended period. Worked out well.
This was the results of my C11 Choline scan at Mayo in January 17:
IMPRESSION:
Choline avid para-aortic and left external iliac chain lymph nodes
are suspicious for nodal metastatic disease.
No evidence of local recurrence or osseous metastatic disease.
FINDINGS: Enlarged, mildly choline avid left external iliac chain
lymph node, measuring 1.1 cm. 0.5 cm, mildly choline avid left para-aortic lymph node.
Faint choline activity within a lower left para-aortic lymph node.
All of these are suspicious for nodal metastases.
Prominent lymph node
at the junction of the right external iliac/inguinal lymph node chains
demonstrates mild choline uptake. This could be
reactive/physiologic or metastatic.
No additional foci of abnormal osseous choline uptake. No abnormal choline uptake in the
prostate bed.
Mayo had no issue with radiating though I chose to have my local radiologist here in Kansas City do the 25 IMRT, 45 Gya. She consulted with Mayo in the treatment fields, margins, boosts...I did combine it with six cycles of taxotere and 18 months of Lupron. My last treatment was May 18, PSA undetectable since.
That is very encouraging! I notice they gave you som size informaton regarding your positive lymph nodes. It seems most of the PSMA reports I have heard of do include dimensional info. Im not sure why my report did not..... it only refers to them as "multiple lymph nodes"
After SRT failed and my medical team talked me out of adding six months of ADT and including the PLNs because there was not long term data I vowed to never again just accept the SOC.
Since then, every decision has been driven by doing my homework and shared decision making with my medical team to achieve the best possible outcomes. I more or less fired a urologist who is the head of a major NCCN urology department and medical association when he was adamant about only treating using SOC, was not even open to other options.
I do not pretend to have their extensive training, education and experience but I inform myself and ask questions.
My radiologist and urologist like me, my oncologist, well, I fired him and should I need another one I have one in mind that fits my patient style.
Challenge your medical team, listen, make the decision that is best for you.
I agree.... the SOC I was recieving (Eligard or Firmagon with Xtandi) was causing multiple heart related SEs and I was confident I was getting very close to a heart attack. I had to discontinue use, and most all of the heart SEs went away. Now it is time to get back on some form of treatment, and what does my Uro and Onc say? "You should start back on ADT with Firmagon and Xtandi.... its the standard of care"..... Grrrrrrrrrrrrr
Hawk, I concur with your sentiments. Do you mind sharing with me the names of your doctors including the one you have in mind for oncologist? You can personal message me if you want.
My concern is that I initially had IMRT sessions for 21 days and then high dose brachytherapy in 2015. Two months after the brachy I felt really sick throughout my body for about five days. I theorize that may have been radiation breaking through the prostate walls and into my body. It was soon after that when my PSA started rising again, after it had fallen from 10 to 5. After that month it just kept rising. I makes me wonder if I was/am resistant to radiation or if the cancer was already outside the IMRT area of treatment and we were just treating to late. I know there is no way to know this for sure but you seem to be insightful so wanted to see if you have any thoughts what to do now?
Since my last Lupron in May 18, PSA has remained undetectable using the <.1 criteria that last shot was a 90 day so probably cleared my system by Aug as T was 135 in October
I have labs in early February, always high adventure greeting the email that the results have been posted to the portal and then logging in to see...
I have Dr. Kwon at Mayo who I see, good but we had some issues with him, late for appointment, rushing though appointments because he had meetings after, Not following up or explaining treatment decisions. Leaving too much of the appointment to his PA...
Here in Kansas City my radiologist is the best member of my team, Dr. Kelly Rhodes-Starke
My urologist is Dr, Christian Hettinger, he’s not been battled tested yet as I started seeing him after my first urologist retired.
The oncologist I may consult when we get to that point is Sukumar Ethirajan, M.D, also local.
As to your way ahead well I can only speak as a layman, nit a medical expert. You have advanced PCa, the scan does not indicate none or organ involvement though with micro-metastatic PCa, systemic treatment using a combined regimen may offer your best way ahead.
As you can see from my clinical data, radiation is on the table.
I understand the new FDA approved oral ADT has better CVD profile, quicker to castrate, higher sustained castration and quicker T recovery.
You may want to consider radiation and short term oral ADT, 6-18 months, is the LNs shrink and go away and PSA stays undetectable, stop ADT after six months and do what I call “active monitoring “ with decision points to image and treat in the future.
thanks Kevin, have other guys on this site done the strategy that you are trying and what were there results? I remember a few guys saying this helped them, even one guy saying he gets radiation every year in a targeted manner (whack a mole). MOs seem to think this is not conclusive in providing longer life. I often ponder how to extend the life of the ADT effectiveness vs. Just doing it solo until it stops working, then start piling on the harsher drugs. That's what you are trying and it kind of appeals to me, but the unknown is whether my cancer is the radiation resistant kind so it's a crap shoot. I'll have to decide to roll the dice at the craps table or just go watch the broadway show instead and hope for the best.
Have you had any pain or other issues as a results of the lymph node radiation? I've heard that there can be side effects like fluid buildup, effects on cbc tests/immune system etc. Have any of the CBC results changed after getting the lymph node radiation?
No issues with the radiation treatment either to the prostate bed or lymph nodes. I think that is a function of advances in the technology, the planning software and the skills of the radiologist and supporting team.
My radiologist sat down with my wife and I and showed us on her laptop the 3D planning software for the PLN. When I was being treated she brought my wife in to see the technology used to deliver the treatment, again, amazing!
It was the video of Kwon that got me thinking of my approach...rather than linear and sequential with each treatment destined to fail and moving to the next one, knowing the end state, resistance, progression and death, bring those treatments forward in the disease and combine them when the disease may be more responsive to treatment and you get long progression free results.
The changes in treatment for advanced PCa in the last 5-10 years to include castrate resistant have been exponential rather than linear. My urologist told me in our last meeting it is challenging to keep up.
That’s good and bad news...good in that plenty of options to choose from, bad in that there is disagreement in the community, patients and medical about which treatment to do and what measures of effectiveness to use in deciding - overall survival, progression free survival, radiographic progression free survival...intermittent ADT or continuous, sequencing...
So, I chose an approach that favors aggressiveness and combining regimens over the traditional linear, sequential and SOC. Another thing I have done is shrunk my horizon, when I was diagnosed at age 57 my medical team talked in 15-20 years. I let my radiologist talk me out of adding ADT to SRT based on emerging data because she said there was no long term data...SRT by itself failed and I was left to wonder had I stuck to my intuition would I have had to travel the path of taxotere, PLN radiation and 18 months of ADT.
So, now my horizon is 3-5 years, will this treatment work for that time, if so, it moves up on my decision list because I believe that after 3-5 years there will be new options.
Another factor though I have more or less always done that is to maintain a reasonable diet, exercise and lifestyle which I believe are additive to treatment. I also monitor my general health with annual physicals, consultations with my cardiologist, having my colonoscopy...
PCa is more or less unique to many men, heterogeneous not homogeneous. Each of us must decide our treatment based on our specific clinical data, our research, the input of our medical team, co-decision factors such as our health, balancing quality vs quantity of life, our lifestyles - I like to ski, bike, hike in the mountains, travel...and of course insurance and finances.
It is overwhelming trying to decide but I have confidence in my decisions and look back only through the lens of learning what I can apply to my next decision when it comes.
My medical team has often said I’m an easy patient since our decision making is shared.
Thanks for your logical and thoughtful message Kevin. I had the same experience when i was presented with options for initial treatment. probably made it sound like you're going to be in a torture chamber it was so bad so you don't need to do it with the radiation. So I went along with his advice but then when the radiation treatment failed I was the one who had to live with the results the rest of my life not the doctor. To add a tenfold insult to injury the ADT that he said was so horrible and I should not do and conjunction with the radiation, I now use ADT indefinitely for the 4 and 1/2 years and who knows how much longer I would rather just use the back then for a 1-year period and had good results.
I think the rest of what you say is logical I think the key is to find a radiologist that knows what they're doing and isn't just winging it. My original treatment radiologist I think was inexperienced and not very good at what he was doing and I won't explain how I got into that situation it's a long story but I trusted and it was a mistake.
I'm in the decision making process last week this week and the week after that kill this conversation is timely. I've got some calls and messages to send out today and tomorrow to better inform my decision but I'm leaning in the direction of what you did as long as they say that it's safe and recommended to do it after they do the axiom.
Forgive any spelling your grammar mistakes I voice dictated.
Kevin, what type of scan machine did you use to get your imaging? I don't recall. Was it conventional, Axumin or was it PSMA PET (only 7 nationwide) My new doc who is arrogant and controlling should have told me three months ago about his desire to do this scan and possible radiation so I could have gotten a PSMA PET. Now I'm limited on time and probably will have to go with Axumin, which isn't quite as sensitive as the PSMA PET.
I agree that we all must make our own decisions based on our situations but I would think that numerous other people on this site must have done similar treatments like you, so we can hear what they have to say. I have talked to two people who had a series of lymph nodes radiated and both of them complained about some level 2-3 side effects, without any slowing of their cancer. I realize this is a subset of only two people but it's usually good to hear people's stories about treatments.
There are other treatments that guys get very supportive of, like LU 177 but I've heard just as many negative outcomes on this site as I have positive outcomes.
Is there a post or two on this site that you know of, which discusses this type of spot/targeted radiation? Maybe I'm using the wrong terminology.
Next time it’s necessary it will most likely be the Aximun scan here in Kansas City, if not that then the recently approved PMSA though that requires a trip to California, the C11 Choline would be my 3rd choice.
My research says sensitivity it goes PMSA, Aximun then C11 Choline unless the PSA starts to get two or higher then all three start to do pretty well.
I can’t point to any specific threads about radiation only or surgery only to the lymph nodes. I do recall some doing one or the other though results have been mixed. My urologist here in KC did but want to do surgery, said too hard to identify all lymph nodes with PCa.
At the time I made my decision the CHAARTED and STAMPEDE studies had just been released with evidence about combining therapies.
There have been a number of studies about ADT and radiation., here’s a link to a presentation - urotoday.com/video-lectures...
I recall TA discussing radiation only to the lymph nodes in advanced PCa, I believe he said because of systemic disease which has micro-metastatic PCa which imaging cannot detect. I believe he generally favors a combined regimen.
thanks Kevin, I'll check them out. I spoke to the dr at the VA where they have a PSMA PET scan and I can do that if I want. I just need to decide if I can get it done and get a radiologist to put together a treatment plan, and do the treatment before my PSA spirals out of control because I'm at the end of my intermittent lupron break and I think I only have about 3-4 weeks before something is done. Did it take your radiation team a long time to develop a 3D plan and actually do the treatments? How many sessions were there?
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