Has anybody here had radiation to spine mets as treatment only? Not for pain relief necessarily. I am waiting for approval from insurance to radiate 4 smalls spots only seen on Pylarify PET. I had the risks explained to me and my concern is that maybe I should let the ADT and 2nd gen do its work and hopefully hold the growth down for as long as I remain hormone sensitive, whatever that might be. The 2 biggest risks is a met in T6 that is about 20% of the vertebrae that I guess will leave a cavity when the cancer dies. And the met in C6 that close to my esophagus.
I am still plenty active and in no pain that I can say for sure is the mets, just sore muscles I think. I am concerned that damage to my spine by radiation might make my QOL much less than it is now, and will be, if I tolerate ADT like I did the first time.
Or do I do this now, be aggressive and get rid of them when their small. My MO told me in great detail where he feels the risks are but that h¹e thinks he can mitigate them.
Anyway, I was gung-ho and getting swept away with putting some action into the scan results. Now that things have slowed down I am rethinking my options a little.
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treedown
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Odd. I opened it once and closed it to reply but it was definitely there. Went back to read it and its blank. A note on top said it does not exist. I'll try again tomorrow.
I read it and while not a apples to apples comparison if I am not mistaken its does not appear to offer any benefit. My RO rattled off the trials he used to justify the radiation now but I do not remember them. Convi ced me at the time. Now I am thinking the reason for the delay of the insurance approving might have something to do with its validity.
I would not let them cut me open now, assuming thats what you mean. However, my previous experience with radiation may be leading me to a false sense of security.Thanks for the input.
Treedown, Yes I had Image guided SABR/SBRT to the T 5 in my spine. 3 days only. Went to MSKCC in NY-Manhatten upper East side near the Queens Bridge. Dr Sean McBride. I was Oligometastatic with Prostate that 7 surgeons said NO to, and 1 met in T5, 2 mets in pelvic lymph nodes, and one lymph nod in retropertoneal (stmach area).
Had a warm body cast made, which when cinched down allows no movement-important. Then 6 tattoo’s (little dots/freckles) that line up with 6 laser lights on ceiling so you are in exact placement each time. I easily walked 7 blocks to and from the hospital, from our Hotel. No reason for my wife to walk with me, but she did anyway.
Whole process is about 20 minutes of setting up, lining up, reviewing scans, then about 10 minutes of the machine circling around and underneath the bed. Zero pain during or after. I did feel a dull pain in the T5 location as if I had lifted too much the day before, but nothing really, and within 4 or 5 days was gone. I went ice skating in Central Park one afternoon, in the middle of it.
Had 5 days of SABR to my Prostate the same week, which also went well. Waited 3 months to let the PCa to die off, then had my first PSA test which was a new low. That was last January 2022. Each 3 month PSA since then has been lower. My latest PSA 2 wks ago .008 my low nadir. Pylarify PSMA PET 3 mos ago shows NO PCa in T5. NO PCa in Prostate. NO PCa in any organ. 3 small lymph nodes I am working on a solution for now. I am glad I took care of it. Not a cure, but allows our ADT2 to work on the micro mets.
I believe they are learning to do more for Stage4 Metastatic patients like me, as we live longer, and hopefully ADT lasts longer with less burden to work on. I’m now playing Pickleball 5x per week. Played 4 hours yesterday. Burned 1800 calories with 7,000 steps.
Good Luck to you in which ever direction you choose, Mike
at that time CT and Bone scan lit up like a lightbulb. They said it was quite large, and yes, bone does re-grow. Sometime to much, but that can be dealt with, and in comparison will not kill you. Mike
I'm back. I had radiation to remove a large tumor in one of my lumbar vertebral bodies and was warned that there was a chance of fracture if I wasn't kind to my back. I tried to be kind and not create any shock but I did manage to create a compression fracture--probably moving snow with a shovel, and I wasn't thinking about the radiated spine, just mad at my old snow blower that would not start when it was about 0 degrees F (-18 C). So the take-away is the more active you are the more you are in danger. I have no regrets. This was a big tumor and it had to go. Other take away is that snow blowers are cheap compared to injuries. Buy the new snow blower!
Got it, thanks. Any idea how big the tumor was as far as percentage of the vertabrae? Also how did you handle the fracture? Is it healed now, that you know of?
I don't know how to quantify the size of the tumor other than it looked pretty ominous on the PET. This thread talks a lot about bone damage post-radiation. But do we know that the damage is worse with radiation vs. after cancer leaves due to successful chemo?
I understand chemo and radiation has its effects but as I have not had Chemo yet I am primarily concerned about the effects of radiation and maybe calculate my risk better. Thats said I am also establishing some new questions for the RO for prior to treatment and should the insurance company approve the treatment.
i used to ride twice per week with 26 guys in Santa Barbara. My unit was always going to sleep. I would stand up on all the hills to make it wake up. Turns out, that was an enlarged prostate causing the issue. I think its possible that squishing of the prostate by my Trek Madone racing seat may have assisted in squeeaing the horses out of the barn and causing this whole metastisis journey. Have you ever noticed how many cyclists are on this site?
Maybe there are just a lot of cyclists. In my group of 26, 8 had prostetechtomies. If you picture a Tangerinee with a straw thru it, that is an enlarged prostate. Now place it between your saddle and your crotch. If it squeezes out any juice, that is metastaic PCa. I just sold my Trek Madone to my neighbor. My days of road biking are over. I kept a cruiser with a big fat saddle to cruise the neighborhood. Miss the intense cardio, good friendships, beautiful scenic rides in the Santa Ynez Mountains. You mention 22 degree climbs…lthat is for the Pros. 12% grades used to kick my butt. I would go from the front of the echelon, to the back as we slowed from 20 to 6mph. Climb on brother. Whatever makes you happy and keeps you healthy. Mike
Hi Treedown, Tough question and I'm no expert but I had a similar question and decided to go heavy on treatment after consultations and consideration of the PEACE and ARASENS trials. It may still be years before we know from the data the best path , although there is more data out now from the trials. I don't regret it now, but it was a pain. I don't seem to have any material side effects, but I'm probably more beat down than I would have been otherwise had I only done ADT+Xtandi. I'm still surfing on my shortboard most days if there are waves FWIW.
As for me, it was a year ago. I had PSA recurrence and the Pylarify PSMA PET identified possible hot spots on the ribs and C5 vertebrae. My PSA was low but short doubling rate, around 0.7 at the scan. I then had the SBRT to the spots about 2 months after starting ADT+Nubeqa+Docetaxel.
I was just listening to Dr Sholtz and a recent PCRI video on youtube about early treatment intensification. Sounds like it's really a personal call, no one size fits all, and depends a lot on the unique situation - age, aggressiveness of PCa history, one's appetite for the tradeoffs, etc. Wish the decision was more clear though...
Me too. The insurance taking longer than expected made me think maybe there wasn't enough justification for it but when I got approved late Friday it answered that question. I feel like if I do it now I may avoid a bigger issue in the future with the same spots. If they had said chemo I am not sure if doing it would have been easier or harder. The NCCN lists it where I am in the guideline but my MO said I am not ready for it. My cancer is low volume Oligometastatic and I am hormone sensitive. This could turn out really good or bad if it zaps my QOL. But if I lose QOL ans gain time with my family that's a win as well in my book. QOL was concern the first time around and it stayed the same as before dx. I have reason to hope this time it will be similar or only slightly worse. The RO said this is nothing compared to the first time. He doesn't seem like a liar or a fool.
If you are hormone sensitive and your mets disappear on the PSMA PET scan than they will heal that is what my first MO said to me. He also said not to use local treatment for cancer but only global treatment. Local treatment is for down the road. He said that for Xofigo. To do Xofigo last as Xofigo is a local treatment only for the bones and not for the cancer.
I would not do operation or radiation to my bone mets mainly because all disappeared on the PSMA PET scan. I am polimetastatic.
If I were oligometastatic I would probably do parallel radiation and intensifying global treatment in order to get cured.
With my polimetastatic disease it is not likely therefore I will only radiate if I will see that the global treatment is not effective (failing).
I am lucky that my scans did not show any visible mets and I did radiate my prostate as it looks like that it is more difficult to kill the cancer in the prostate with global treatments.
Keep an open mind and do not rush with radiation except if your MO and RO are in agreement about it. My MO and RO agreed that the radiation of my Prostate is indicated after 5 years on ADT and early chemotherapy.
I posted this before my RO decided against radiating the mets found by Pylarify scan. Right now I am back on ADT and will get conventional scans maybe every 6 months now. I guess the plan is to wait until something gets big enough to be seen on conventional imaging.
Yes technically, currently at recurrence and looking like I may hit chemical remission soon and yes hormone sensitive. The cure ship has sailed unless something miraculous happens. I am on ADT for life now.
Read this post from Australia and see what my MO suggested. We are all different that is why we need good doctors. Where are you, in which hospital? Can you ask for second opinion? I am not saying that you are not doing fine just to see what other doctors would suggest.
In the PNW near Seattle. A smallish local hospital so nothing to impressive and not a center of excellence. I could pay out of pocket for a second opinion at SCCA University of WA but don't think it worth the money at this point. My insurance sticks to SOC/NCCN so my options are to do what I am doing or push for triplet therapy. My MO thinks its too soon for triplet therapy. I suspect until something shows up on conventional imaging.
I have seen that but recently stopped enzultamide and tried for Daralutamide but was denied so will restart Zytiga in the next week or 2. I assumed I would have a similarly poor response to apalutamide as I did to enzalutamide
OK, you may be correct about pure possible response to apalutamide. Yes, you could definitely try abiraterone and see your response. Some people have bought apalutamide and abiraterone in the same time but it is experimental and not standard of care.
Thank you for your question! Apalutamide and abiraterone are two different medications that are commonly used in the treatment of prostate cancer.
Apalutamide is a medication that belongs to a class of drugs called androgen receptor inhibitors. It is used in the treatment of metastatic castration-sensitive prostate cancer, which means that the cancer has spread to other parts of the body and is still responsive to hormone therapy. Apalutamide works by blocking the action of androgens (male hormones), which can fuel the growth of prostate cancer cells.
Abiraterone, on the other hand, is a medication that belongs to a class called androgen biosynthesis inhibitors. It is used in the treatment of metastatic castration-resistant prostate cancer, which means that the cancer has spread to other parts of the body and is no longer responding to hormone therapy. Abiraterone works by blocking an enzyme called CYP17, which is involved in the production of androgens.
While both medications are used in the treatment of prostate cancer, they have different mechanisms of action and are typically used in different stages of the disease. Apalutamide is used in the earlier stages, when the cancer is still responsive to hormone therapy, while abiraterone is used in the later stages, when the cancer is no longer responding to hormone therapy.
It's important to note that the specific treatment approach for prostate cancer can vary depending on various factors, such as the stage and aggressiveness of the cancer, as well as the patient's overall health and preferences. Therefore, it's always best to consult with your healthcare provider for personalized recommendations.
I have been on Zytiga in the past and tolerated it very well which is why after my poor tolerance of Xtandi and denial of Daralutamide that my Healthcare provider decided I should restart Zytiga. My only real concern is the steroids that I would have liked to avoid.
Agree, same here. Brysonal said that his Finland MO wanted him on Apalutamide. He was the only one in his London MO office picking up anything else than Abiraterone.
He could not get prescribed in NHS setting Nubeqa (darolutamide). We all believe that Nubeqa is the best. Developed by the Finland pharmaceutical company Orion Pharma and the licensing sold to Bayer for marketing and manufacturing.
I am a bit afraid that the cancer from my spine could spread to my brain, therefore I keep an open mind about Apalutamide. Later maybe I could add Abiraterone plus Prednisolone and even later dexamethason instead of Prednisone.
I have that same fear. This experience with radiation per post and Xtandi was my first real QOL decision time since this started for me. That said most if not all of the negative physical or mental issues that I have experienced since dx have come from the treatments.
Thank you for your question! Apalutamide and abiraterone are both medications that are used to treat advanced prostate cancer. Apalutamide is a type of medication called an androgen receptor inhibitor, while abiraterone is an androgen synthesis inhibitor.
The use of apalutamide and abiraterone together is actually a common treatment approach for certain patients with advanced prostate cancer. This combination has been shown to provide additional benefit and improve outcomes for some patients.
However, it is important to note that the decision to use these medications together should always be made in consultation with your healthcare team. They will consider your specific medical situation, including factors such as the stage of your cancer, response to previous treatments, and any other health conditions you may have.
If you are considering the concurrent use of apalutamide and abiraterone, I would strongly encourage you to discuss this with your healthcare provider. They will be able to provide you with personalized advice based on your individual circumstances and help you make an informed decision.
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