My stage IV prostate cancer has gone castrate resistant ... I've been taking androgen blockers (Eligard injections 90 days plus daily 1gm of abiraterone) for five years. The primary treatment in summer 2018 was external beam radiation. In 2021 I had cyberknife radiation to new lesions in spinal vertebrae L3 and T9, which knocked the cancer back but also weakened the bone and led to compression fractures, to harden the bone I'm now also getting an Xgeva (bisphospehante) injection every 90 days, along with a ton of calcium every day.
Now after two years of undetectable PSA, my numbers are rising. A recent prostate-specific PET scan shows a new hotspot in C3, the cervical vertebrae, and they are proposing another round of radiation.
I got two years from the last round of radiation, though with significant side effects. If the cancer is castrate resistant, how likely is it that more new lesions will appear elsewhere soon? If I am about to play radiation whack-a-mole, it might be better to go straight to chemotherapy and skip the collateral damage. I know there are no firm answers, so I am seeking the experience of you all.
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Johnkelsey
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I recall taking either enzaleutamide or apaleutamide early in treatment, then being taken off it with the explanation that "we may need it later on..." I didn't understand at the time but now I think I do...
Tall John, in response to your reply to Johnkelsey: what would you suggest if you had already had doxetaxel as a first treatment on diagnosis, followed by Zytiga and Radium 223? Also castrate resistant. Enzalutimide paired with...? Or some other treatment?
It almost has to drop, at least slightly, following radiation. If one is oligometastatic, it can become undetectable. That's because radiation is very good a local control (which is sometimes the only goal; e.g., painful bone metastases )- but probably provides small systemic benefit (from the abscopal effect). It is a mistake to confuse PSA with your cancer. Read this:
I can think of a circumstance where “ whack-a-mole “ is necessary but this is the “ last resort “ type.
Group member Urang ( now passed after 23+ years of fighting ) had a significant number of whack-a-mole radiation treatments over his long tenure., most all up and down his spine, but a couple on the pelvic bone and legs … a hand etc. He was paralyzed a couple of times in the spine from collapsing discs…each time the V.A. radiated the offending met and installed steel rods , and restored him. One time out driving in the rural setting he lived in, with his wife in the car , his head fell over to the right …. vertebrae in his neck collapsed. She drove him to the V.A. and a couple rods and brackets later he was as good as new. They surgically removed that diseased vertebrae. In one instance the V.A. radiated one of his lower spinal vertebrae and it left him paralyzed from the waist down. Mark ( Urang ) was back up and had learned to walk again in 3 months.
Mark got sick 🤒 n an earlier era before drugs like Xtandi existed. The “ plant radioactive seeds in the prostrate “ or harsh chemos were popular treatment back then. He had them all several times.
My opinion is that TA says is clearly right …. Mark’s many radiations always addressed an urgent specific need that had a high likelihood of resolving immediate disasters. Usually major untreatable pain was central but restorative intent figured in as well. I think Mark had between 9 and 11 sites of stainless steel installed when he passed , including a major one in his mandible where radiation and surgical cancer removal were both involved when part of his mandible was totally eaten away by cancer. I think that kind of whack-a-mole added substantial extension to his life and well being. Mark was the poster boy for being that aPCa warrior . It took “ a man “ to accomplish what he did. It doesn’t seem like we hear about this type of treatment much anymore.
Truly an amazing warrior on so many levels. The VA gets some bad press but when you hear stories like this they really worked to help him. Thanks for sharing this story.
I Worked at the V.A. medical center in Fresno , director of biomedical engineering, for nearly 32 years. We provided excellent medical care , but all government bureaucracies suffer from being bureaucracies. I’ve heard it improved in the decades since I left tho.
I’ve been battling metastatic PCa for nearly 10 years now. Part of my initial treatment was IMRT of my prostate and several nodes. I also have/had numerous bone Mets which became undetectable for around 6 years after early aggressive treatment which included early chemo per CHAARTED trial. I’ve been on Lupron, Xtandi and Avodart for this entire time per Snuffy Myers. A little over a year ago my undetectable cancer became castrate resistant. My current MO Dr. Sartor ordered a PSMA scan when my PSA reached close to 0.2. It detected a suspicious spot on a rib that I had radiated using SBRT. PSA has retreated to less than 0.1 but not undetectable. Sartor told me in my recent visit up at Mayo that we can keep doing whack a mole provided it’s not too many areas or in a bad place. As someone who’s had chemo (taxotere) I can tell you that for me it was one of the most difficult treatments that I’ve had, and there are still some lasting effects including neuropathy. It also took a long time for my immune system to fully recover, and I was fairly young - age 55 when I had chemo. Other’s experience may be different but I would ask those who’ve actually been through it before deciding.
Meanwhile my plan is to keep kicking the can down the road while trying to delay treatments like BAT or Lutetium. Trying to keep those bullets in my holster as long as I can.
Hey!!! Wait a moment!!! I'm the guy who posts the humor around here..... Gee Willikers.......(teach a man to fish and sure enough he starts stealing yours, this ain't no NYC Bodega ya know).......
Ah Brother CB, you know me well It's gonna be 73 there, so gonna go down on Sat pm and come back up Sunday. Did a lil seafood grillin over Labor Day weekend💙
I think the exact role of selective radiation in oligometastatic prostate cancer is still unresolved. As for the term "whack a mole" that was, and probably still is, a favorite term of Evan Yu, one of the stupidest people IMO that I have interacted with during the course of my disease. Remember this is a disease that very much is defined by the fact that what helps one person may very well not help another. This characteristic profoundly affects every study out there. We very much need the individualized care plan that everyone likes to talk about but is rarely applied.
I am about to start a Radiation Phase I Clinical Trial called “START-STOP” at Dana Farber for my recurrent Lymph Nodes PCa.
Stereotactic Magnetic Resonance Guided Adaptive Radiation Therapy (START) : 1 or 3 Fraction Oligometastatc/Nodal Cohort (STOP)
Cohorts R - 1 or 3 Fraction Nodal and Soft Tissue Metastases
This is high-dose radiation fraction protocol for a few sessions, using simultaneous MRI during treatments to adjust the treatment field in real-time for internal organ/structure movement such as bladder or bowel filling, breathing during treatment.
They expect about 76 people whose cancer has spread into their abdomen or abdominal wall to be enrolled in the study
(I have both - two lymph nodes and the abdominal wall). Other types of cancer may be included in the trial. They have apparently been having good results with cancer control while minimizing QOL issues. Will be tightly monitored, rescanned and frequently tested during the trial. PSA watched very closely. Hormonal therapy in waiting based on various benchmarks.
Sounded good to me. I am one of their unique cases - recurrent nine years after Open RRP, (No other treatment to date) SLOW PSA climb over TWENTY FIVE YEARS or so (last PSA 0.90, to now 1.14 in a month).
Should be interesting! High dosimetry with fewer fractions. I will let you know how this goes. Could be the right choice for my case!
Your 72, you're trying to live a full life and die a "regular" death, not one from prostate cancer.
Being castrate resistant doesn't speak to the amount of cancer, just the state of your cancer.
I'm using SBRT in my plan to get to that "regular" death. I have been using it to stay off ADT as long as possible to prevent castrate resistance.
But you're there, so get all the options available, whether your condition currently allows for it under us medical rules. And determine the effectiveness of each, and formulate a loose plan that may change for your condition, and as new treatments become available.
Meaning is pluvicto of interest to you, not having had chemo yet might mean you can't get pluvicto yet unless there is a clinical trial which will bring that treatment forward of chemo. can you get it in a clinical trial?
Of course you could get pluvicto overseas for considerably smaller self pay outlay. India in particular.
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It's gonna be 73 there, so gonna go down on Sat pm and come back up Sunday. Did a lil seafood grillin over Labor Day weekend💙
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