I have not posted lately because my cancer has been relatively stable. As you can see from my background, I've been in this fight for 20 years. God has blessed me with A longer life that then probably was to be expected.
Yesterday, I had my second PSMA scan. The scan showed that the cancer is still in my bones and is mildly expanding in the same areas. I have significant spots on some of my ribs and on my hip bones. My question for all of you is have you been in the same situation and had your spots radiated with any success?
My MO at Mayo Phoenix, does not want to radiate any areas unless I have severe pain in those areas and says that we can only do it once. It would seem to me that if you radiated these significant spots that a lot of the cancer would be eliminated. please let me know your thoughts.
I'm no expert but am inclined to agree with your MO. Your Gleason is quite low at 7 so I would wait until you start getting pain from mets before you radiate - it could be several more years. Good luck.
Some believe Mets can spawn more micro metastices. I was denovo metastatic with Mets in 3rd and 6th right side ribs, iliac bone and, later revealed by a GA68 PSMA scan. para aortic lymph node string. Always asymptomatic. Initially had my whole prostate radiated and, a year or so later all Mets zapped. Two years later no recurrence and still hormone sensitive. Currently on a medication holiday for 5 months and PSA undetectable. Go for bi-monthly labs tomorrow 🤞
If I read this link correctly, it says prophylactic radiation may help BECAUSE it seems to prevent future problems related to pain….which is great. But-unfortunately, it doesn’t appear to indicate a slowdown in the progression of the cancer itself.
We have a few similarities in diagnosis and treatment. I decided after RP at age 55 to be as proactive with additional treatments as possible whenever my PSA starts rising. Two of my oncologists say they've seen good success with radiating whatever tumors can be seen. My radiation oncologist said he had never seen cancer return to any areas he radiated.
There is no evidence that radiation of the bones has any benefit, especially if they are numerous. It doesn't "eliminate a lot of the cancer" as you suppose, it only eliminates the cancer you can see (which is the tip of the iceberg). If there were just a few, and they were in safe places, why not?
Have you tried re-challenging with a second-line hormonal since you had chemo?
TA, assuming identifiable Mets took some amount of time to grow to the size where they can be identified don’t you think that eliminating them would at least set the clock back the amount of time it will take new Mets to grow to that size?
There's a concept in oncology called "seed and soil." The idea is that when metastasic cancer cells are released from the source (e.g., the prostate), there are thousands of them. These are the seeds. They find the kind of "soil" they grow best in. For PCa, the best soil are lymph nodes and bones. Then, they can spend years preparing the "soil" so that it sustains their growth. Once the soil is prepared, growth is very quick, doubling in hours. When the metastases get big enough, they shed more seeds, perpetuating the cycle.
It's been found that when there are 1-3 metastases found on a bone scan/CT, treating the prostate (the originator of the seeds) can slow the spread. But it has not yet been found that treating the most noticeable metastases has any benefit. Maybe it does - we just don't have the data yet. (We do have the data from a large trial in women with Breast Cancer, which proved futile) Treating metastases reduces PSA (PSA is mostly generated by the largest metastases), but there is no evidence that it slows progression of new metastases.
Radiation is not innocuous, and radiation in the mediastinum can be particularly damaging. So it is important that if the patient wants to try it anyway, that it be in a safe place. It is also important that patients not get seduced by the lower PSA into thinking that they can forgo systemic treatment.
I had a somewhat similar situation. After RT on my prostate and hip/pelvic bones, then 18 months of ADT, and then a 12 month ADT vacation a subsequent PSMA scan showed 4 small spots on my ilium. My MO consulted with my RO to see if he thought additional RT would be helpful. He said no, citing the studies the TA referenced. While he thought it might be palliative if there was pain, he didn’t feel it would be curative based on current knowledge. So we settled on resuming ADT (Lupron), which I did. Four months later my PSA as fallen to 0.3 and I feel good. This is my third round of ADT and the side effects this time are minimal.
Your comments are also relevent to my situation. My PSMA scan found 2 large PSMA expression in the lower
retroperitoneum/para-aortic region. Unfortunately, this area (or nearby) had been previously SBRTed. The Umich radiologist (William Jackson) was VERY hesitant to radiate. He said he could be "agressive" if I so requested but it is clear he is not advocating that. My PSADT is now at 3+ months (now 4.02) so I will be starting HT again next week (this time, Orgovyx). Dr. Jackson is worried about bowel SEs if he radiates. Would it make sense to get a 2nd opinion on radiation? So far, my PC has been very castrate sensitive. Is it possible that this HT can eliminate those 2 spots without SBRT?
My 2nd response to this post. I forgot to mention that my hip was first radiated in 2014. It was radiated a 2nd time this past June, and as I indicated in my previous post, my PSA dropped from .32 to <.05.
BTW- there are many medications that slow and sometimes reduce bone Mets that almost all of us were taking and/or are still taking: Lupron, Zytiga are the ones I have been taking.
I think each person is different based on how much radiation you got originally. I had a ton. I remember the guys in my group all had different amounts. We all had the same number of days but some only got 1 or 2 different locations where I had 4 locations hit every day.
my doctor says about the same thing, he was afraid that with the radiation the danger of hitting other vital spots was to high for now. Good luck warrior 🙏🙏🙏
I was happy when Dr. Singh decided to not even radiate my two lymph nodes during initial imrt . They do wish to limit RT as much as possible . RT can have side effects .. my uro told us 6 months chemo and I’d die in 36 months .Dr Singh changed that . I was very happy no ports .
I am in a similar situation, but I am 14 years into it so I am six years behind you. I guess you are kind of a demonstration of what I might be going through six years from now. I have a sore rib which has been sore for about six years. I have gone through many other mets, mostly lymph nodes on my back, neck, and behind my left ear. I am on Lupron which probably keeps the mets from growing, and allows my self treatment to reduce them. I self-treat my suspected mets with heat and I consume a lot of lycopene-rich foods which I am convinced are both helping to reduce my mets, in conjunction with Lupron. I see it as a sort of three-pronged attack, with the Lupron cutting my testosterone, the heat directly killing the met cells, and the lycopenes increasing T-cells which also kill the met cells and reduce their reproduction rate. I have never really gotten scans that verify my mets but I can feel them, which is different from your situation where you say you cannot feel them. Generally I feel them moderately when I put pressure on them, but not otherwise. Maybe yours are different from mine. I get the impression that we all have different situations.
Furthermore, I am under the impression that scans cannot see mets under roughly 6 mm. I think the small tumors can be eliminated by heat it they are near the surface. Mine, fortunately, have been small and near the surface. Also, i get the impression that all of my mets started in lymph nodes, then some grew to invade nearby bones. They grew but were subsequently shrank and disappeared, all but one rib met that I am focusing on lately with daily hot-hot showers locally, 110F for 30 seconds.
I came across it in internet wanderings. Can't seem to find now. A scientist discovered in the 1920's that cancer cells die at 106 degrees F. I started to use hot showers a few years ago, 2018, eliminated skull mets. Since then I use on suspected mets often. I measure temperatures with a thermometer, have tried many methods. It works for me. I'll try to find the article again. Will post here similar articles.
In clinical trials, researchers found that temperatures of 106°F to 111°F (41°C to 44°CTrusted Source) were not toxic to healthy cells but were toxic to cancer cells.
The idea of using heat to treat cancer isn’t new. Historic recordsTrusted Source have found evidence that ancient people in Egypt, India, and China used heat to cauterize tumors. They also used volcanic steam and mud baths for general well-being.
The modern history of using heat to treat cancer dates back to the 1850sTrusted Source when surgeons William B. Coley and Carl D.W. Busch observed that fevers were associated with the regression of tumors.
I used several methods, not just hot showers. I used a 2.5 lb weight that I heated in boiling water and then let it cool to 140F, put it on the floor and lay down on it with it located on back lymph nodes, years ago. Electric heating pads work. The shower concept has proven to be least amount of trouble. I tried hot coffee cup for awhile. I bought a portable sauna and used it religiously biweekly at 125 degrees for half hour for a couple of years. There is not much to do but to experiment. Just be careful not to scald yourself.
At wife's suggestion, I tried writing a book, "Defeating Stage 4 Prostate Cancer". I never finished it. But the act of researching led me to actually defeating my aPC. ..so far.
I have an appointment this morning with an RO to discuss the same thing. After having undetectable PSA for about 6 years, my PSA has started to slowly tick up over the past year. It’s still extremely low, 0.17 but my MO, Dr. Sartor recommended a PSMA since I am so heavily treated (triple ADT since 2014). It showed a single spot on a rib, unless the RO advises against it I plan on having it radiated. Sartor is ok with that plan (he recommended it) as is my local MO.
I also had my prostate radiated early on along with several affected nodes despite having multiple skeletal mets together with the nodes and prostate of course. My urologist was against it saying “it’s too risky” but I felt debulking was a smart way to go. Later under the care of Snuffy Myers he said that it was one of the best things I’ve done regarding treatment. For me, I’m not going to let a met grow and fester, I’m going to eliminate it. Besides, the radiation should play well with the Provenge treatment I had a year ago.
Originally prescribed by Snuffy, been on it almost 9 years, he felt, and I agree that Xtandi is more effective than Zytiga. Can’t argue with the results, given my starting point. Sartor has been fine with it as well.
No I was given the option but didn’t want to mess with what was working, my docs were pretty frank about it too, given the success I was having they said why mess with it. I agreed.
od morning Ed. Your post caught me eye because you have had Provenge. I have been fighting this disease since 2005. I had radiation early on and have advanced to Lupron Darolutamide advodart. I recently had a PSMA scan as a result of rising PSA now at 1.19. I am concidering Provenge next BEFORE chemo. What can I expect? Would you do it all over again? Does it help? Thank you I appreciate your reply. Brad
Provenge was pretty easy, it’s done in three sessions, each required going through a 3 hour session where white blood cells are collected then 3 days later they are infused back into you after being primed to seek out prostate cancer cells. Trials have shown if you get Provenge with a PSA <5.0 it is the most effective and adds 14 months survival time. It doesn’t cause PSA to drop so you are just having to go with the belief that it is working. The only side effects that I had was after the 3rd infusion it felt like the after effects of a Covid vaccine, which I took as a good sign that my immune system was doing it’s thing. In hind sight I may have opted for a chest port which has its pros and cons, but it avoids the need for getting stabbed repeatedly with some pretty large needles at the collection center (Red Cross in my case). It also allows you to use your arms during the 3 hour collection. You can’t move during the collection process so I wore some pads in my briefs in case I had to relieve a little bladder pressure. It’s another tool in the fight, I’ve always taken the aggressive approach to treatment so once I became treatment resistant and qualified for it I went with it.
Since you're with the Mayo Clinic you might try a tele-visit consultation with Dr. Kwon at the Rochester location. I'm sure he has an informed opinion on your situation. Good luck tceinvestments
I have read a lot about Doctor Kwon and have watched his videos. I asked my MO and he said we should only do it when I have pain. I don't know what to believe at this stage. All I know is that I have been blessed with a very long life on this journey and I and I want to keep at it. I so appreciate your input......
A Retrospective study indicates serial SBRT may be beneficial in Oligometastatic Prostate Cancer
Graham49•
18 hours ago•1 Reply
From Renal and Urology News
Serial stereotactic body radiation therapy (SBRT) directed by positron emission tomography (PET) using novel radiotracers may offer clinical benefits in patients with oligometastatic prostate cancer, according to a recent retrospective study.
The study’s findings suggest that a second course of SBRT for men with recurrent oligometastatic prostate cancer following an initial course of SBRT is an important therapeutic strategy to consider, Daniel H. Kwon, MD, of the University of California, San Francisco, and colleagues reported in Urologic Oncology.
The study included 25 men with 1-5 prostate cancer metastases detected on PSMA (prostate-specific membrane antigen) or fluciclovine PET and who underwent 2 consecutive courses of SBRT. At the time of the second SBRT course, PSMA and fluciclovine PET detected oligorecurrent disease in 17 (68%) and 8 (32%) patients, respectively. Of the 25 patients, 15 (60%) had castration-sensitive disease and 10 (40%) had castration-resistant disease.
Following the second SBRT course, 16 patients (64%) achieved a 50% or greater decline in PSA level (PSA50), Dr Kwon’s team reported. The median progression-free survival (PFS) time was 11 months. The median survival time without initiation or intensification of androgen deprivation therapy (ADT) was 23.2 months. From the first SBRT course to the last follow-up (a median of 48 months), 7 patients (28%) remained ADT-free, Dr Kwon’s team reported.
A PSA50 response after the first SBRT course was significantly associated with a 64% decreased risk for disease progression and a 93% decreased risk for ADT initiation or intensification after the second SBRT course.
“Degree of biochemical response to first SBRT warrants further study as a potential predictor of PSA response, PFS, and ADT initiation/intensification-free survival following a subsequent SBRT course,” they concluded.
After controlling for potential confounders, the degree of biochemical response after the first SBRT course and concurrent change in systemic therapy with the second SBRT course were significantly associated with a greater likelihood of a PSA50 response and longer PFS after the second SBRT course, according to the investigators.
“Our study adds to the limited but growing literature supporting the feasibility and potential clinical benefit of serial metastasis-directed SBRT guided by novel radiotracers and PET imaging,” the authors wrote.
The authors wrote that their preliminary findings provide a rationale for larger and prospective studies of serial SBRT.
Reference
Kwon DH, Shakhnazaryan N, Shui D, et al. Serial stereotactic body radiation therapy for oligometastatic prostate cancer detected by novel PET-based radiotracers. Urol Oncol. Published online November 24, 2022. doi:10.1016/j.urolonc.2022.10.025
Tom- I have had PC with a few Mets for 10 years. Last year, my PSA became measurable (above .05) and started rising for about 1 year til it reached .32. My M/O did a PSMA and decided the rise was likely due to my largest met, located in my left hip/ acetabulum. She recommended we radiate it, which was done in late June. PSA retreated back to below .05 (which is as low as MSKCC measures) since then- I hope it stays there. I hope this info helps and best of luck
Thanks so much for your input...........................
Hey Tom! 20 years and this never really leaves us alone? My Mo that saved me is now at Mayo Az. Dr Pariminder Singh! He was a light in an otherwise dark room . I’m almost 8 years in now . I have no illusions that pc is done with me . I’m skating in the eye of this storm . Good luck in this next round . Take care ..Mayo is the best around . Imho✌️
I had a round of radiation treatments in August to zap a few lymph nodes, 12 years after my surgery and first round of radiation. Nubeqa has kept my PSA down pretty well for nearly 3 years, but at the first PSA after my radiation, it's down a little more, 0.17 now. The RO hopes to see it even a little lower in a few months. These three lymph nodes are the only visible signs of mets on any scans I've had all along. BTW, the RO plans to keep an eye on things and if any additional hot spots show up, he plans to go after them as well.
Tom - who is your MO at Mayo - I've just starting to go to Mayo and will have my second appointment with Dr Moore in January. I'm just coming off of a ADT vaca - my PSA is climbing and as of a week ago is at 1.1 -Mayo has set a trigger at 2 for action - My PSMA/PET scan was clear in November and i was hoping that when i hit the trigger, they would do another scan to see if there was anything to radiate before another round of ADT. It sounds like this may not be possible if they reserve radiation for just pain management
I don’t know but I would think that would be exactly what proton radiation is for.
I had it done to my whole pelvis in 2019 and asked at the time if he could hit spots that flare up and he said yes. That was Dr Shaw at MD Anderson. I also see Dr Kwon at Mayo in Rochester and he definitely does radiation on Mets for not only pain but to try to stop the cancer.
Lots of things determine if it works but I’d go for it. I know MD just built a new building and added several new proton machines.
I am getting ready to talk to a radiation doc about radiation to mets in lumbar spine to help with pain. It would be great if it could reduce pain that seems to have really come on strong after first Lu177 treatment, but I will make the decision based on risk/benefit. Not sure yet what the risk of radiating the lumbar spine is, but seems like there are a lot of important things in that area one would not want to damage.
I have had a big uptick in pain in the lumbar area. Not sure if it’s from the Lu treatment or if its just coincidental. I just learned I even had bone Mets a couple months ago. It’s bad enough Advil and Tylenol dont keep it in check. Have started Hydrocodone once or twice a day
thanks, hoping it’s only temporary……… also going to start one of the bone targeting drugs like Prolia, so maybe between that, a little radiation, and more Lu, things will improve
Ask if HIFU for PC bone mets can be used, I believe MAYO uses this. Check with Dr Kwon in Rochester MN if your Scottsdale Dr does not offer this, see if this is a possibilty for you, what their protocol is for it
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My dad will start radiation to his bone Mets what should we expect?
Does ALP indicate bone mets?
Decided to start LU-177 in June
Prostate removal after radiation??
Surgery or Radiation?
