Hi all. This forum has been very helpful as it is filled with many knowledgeable people, so I thought I would ask a tough question.
Does anyone have any thoughts on an alternative to radiation? This will be the second time radiation will be applied to the same area in 18 months.
I had radiation to my lower spine (sacrum) in 7/2019. The symptom being resolved was severe nerve pain down my right leg.
Currently I’m experiencing numbness in both feet and nerve pain down the back of both legs.
Radiation is the recommended method to resolve. My last MRI (1/29/2021) impression stated :
“Extensive osseous metastatic disease involving the L2, L4, L5-S4, and coccygeal vertebral bodies and visualized portions of the sacrum and iliac bones, similar to 12/10/2020 MRI. Persistent extensive extraosseous involvement of the spinal canal from
L5-S2 characterized by circumferential involvement of the epidural space by metastatic soft tissue which severely narrows the spinal canal and encases the exiting bilateral S1, bilateral S2, and right S3 nerve roots as they traverse the neural foramen.”
I’m reaching out to an orthopedic oncologist to see if they have any alternatives to radiation.
My oncologist does not want to proceed with any new therapy until I have radiation. I started BAT treatment in October 2020 and only received 1 shot. We held off on the second shot due to an increase in pain and the fear that another shot would make me worse. I have been living with metastatic prostate cancer since 11/2010 and have gone though most FDA products, and currently looking for a suitable trial. I feel that having radiation a second time to the same area with about 18 months may not be worth the risk and entering a trial, assuming a good outcome, would eliminate the need for radiation. Also, I think I would still have the option of radiation if I my symptoms worsened. Currently I’m on Eligard and Enzalutamide. The thought is that the BAT treatment may have made the PC cells sensitive to these two drugs again. I do not and never believed PC would kill me, so I'm concerned with my longterm outlook.
Thank you in advance for taking the time to read.
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How much radiation was applied the first time? Sometimes two shots are required for complete local control. I don't understand why you are concerned - please explain.
My concern is radiating the same nerve again within 18 months. First time was 30 GY/10 fx L1-S4 RT. I'm told by the radiologist oncologist that that second time around poses increased risk of nerve damage. Also, some of the long term side effects (not stated as rare) are permanent damage to spinal cord/nerves. If I read the article provided above correctly, which was not related to radiation to the spine, less radiation may be more effective than more radiation. I currently do not have the plan for this upcoming radiation treatment, but will call to get it. I consulted with two spine surgeons, one said there was nothing he could do, and the other said he did not see anything that needed surgery at this time. that was January 2021. Thank you for responding
I’m not sure how directly relevant this is .... but my friend Mark ( a 22 year survivor) had a Metastasis on his lower spine that became so painful that 100 mg of morphine or high dose fentanyl wouldn’t touch it. He had pain relieving radiation to kill the met. It was very close to his spinal chord and the next day he was paralyzed from the waist down. He went to rehab and in about two weeks was up and walking fine again. He has so much stainless steel screwed to his spine , he looks ( x-rays ) like a jewelry store. He’s a trooper.
No, you got it backwards. 16 Gy in a single fraction than than twice as much radiation as 30 Gy in 10 fractions - fractionation has a big impact on the dose absorbed. More radiation provided more local control than less radiation, and it does with better pain palliation. In other words, even if you got another set of 10 treatments at 3 Gy apiece, you would not have had as much radiation as the 16 Gy in a single fraction (a dose that was found to be safe and effective).
Prior to 2020 I was able to keep my PSA under 50, then it rose to 256 prior to my first Docetaxel treatment. Prior to the first Docetaxel treatment I was on Eligard and Zytiga. I only did 3 treatments because my PSA kept rising after each treatment, PSA, 506, 552, & 641. During this time my alkaline phosphate remained at 80 or slightly below. After my first and only BAT treatment (10/30/2020) my PSA jumped to 1782 and alkaline phosphate to 125 (11/30). Most recent PSA (1/22/21) was 641 and alkaline phosphate (12/31/2020) was 134. Currently on Eligard and Xtandi. in 2016 I was on Xtandi and it worked well for a while. I'm on it again because my oncologist thought the testosterone shot would make the cancer cells once again sensitive to Xtandi, but I do not feel that to be the case. Thanks for responding
The Johns Hopkins guys (Demeade et al) who did some early BAT trials screened their subjects for bone pain but accepted as subjects those with arthritic pain. It turned out later that some of the arthritic ones really had bone pain and mets. They had pain from the BAT injection that subsided as T levels dropped. Some of those who had pain elected to continue in the trial. Second and subsequent shots of T produced significantly less pain. Small sample. It appears the pain is a result of inflammation. If your onc will do BAT it may be worth it to extend the usefulness of enza, using anti inflammatories and painkillers as necessary. I favour ibuprofen+paracetamol+cannabis oil (50/50 CBD and THC). I don't like opiates. I think 3 shots of BAT are needed to determine if it is effective and if it resensitizes to enza.
I agree with you-second RT on spine can go very wrong. I have a met on L3, and because it has some prior physical damage I asked my onc if I could still use my chiropracter and he said it could be dangerous doing manipulations there. I think systemic treatment is the way to go.
Thank you for responding. I'm under the care of the oncologist you mentioned and he refuses to continue BAT until after radiation. I had some bone pain and nerve pain prior to the first shot. He thinks the elevated T caused my current symptoms. I'm not even sure if he will continue BAT after radiation since we are also discussing trials. I'm not a fan of FDA approved treatments although some have been very effective. I like the idea of the BAT treatment it is low/no toxicity. I did talk to the radiologist oncologist yesterday. Of course she was confident that the radiation was low risk compared to doing nothing. Since my OC will not move forward on a treatment/trial I feel that I need to have the radiation. I'm in Virginia and trying to get an appointment this coming week with an oncologist at UVA medical center and an orthopedic surgeon to determine if there is an alternative treatment. Radiation tentatively schedule for 2/15. Thanks again.
I might have a met on the pedicle of my T8 vertebrae. I may have a biopsy soon. If positive, I will try to get proton beam treatment. It seems it is more accurate and does not deliver an exit dose going all the way through the body. You might look into it. Also, if you have a PSMA scan and your mets are PSMA avid, you might look into Lu177 treatment.
I'm going to get a PSMA scan in the near future. All my PC is in the bones. I looked into the proton beam treatment and thought I did not fit, maybe I have to much PC or I got the impression it was for only soft tissue. I think I'll look into that tomorrow. Thank you for responding :-).
It is doubtful whether just 1 shot of BAT would affect anything either way. With BAT, the first shot usually causes a PSA spike. (as do many treatments). It's a general rule: don't do a PSA test in the first month after the first shot. But I am not a doctor, let alone an oncologist. Good luck and best wishes. Stereotactic radiation is very accurate and minimises damage to nearby tissues.
They prefer not to treat patients with BAT who are symptomatic. They made an exception for me, and now they are fearful that another shot will cause the tumors in my spine to grow more. My oncologist said the same thing about a PSA test after the first shot. I learned to listen to my body and not get upset over numbers. Thank you for your reply.
I had some spread this past summer , went into my spine and caused me incredible pain on my right side and arm , I had 5 targeted treatments that caused some significant pain , but now there is no pain in the area that was targeted , and the pain was a lot less during radiation than before I got it
Have you got Pca in lymph nodes or organs? If not, and you only have Pca in bones you could consider Xofigo. ie, Ra223. There is also Lu177, but that has become hard to get in USA because you cannot easily travel to Germany but there was a couple who went to India for it and gave good report on what happened.
What you get done depends on just where your Pca is located, and how many mets you have. If you have very few mets, EBRT is a bit old fashioned, and better would be IMRT where X-ray beam path ways are aimed to cause least side effects.
In 2010 I had EBRT as original treatment for my inoperable PG and that was 70Grey over 35 days, and in 2016 I had an an additional 31Grey IMRT as "salvation RT" and pathways were different to EBRT. I still had radiation colitis for 2 months, but that went away, and despite all the RT I have good urinary continence, but if I need to pass solids I have to go straightaway. It seems nerves can take quit a bit of RT, and your radiation doc should know just how much is OK. There are tables for how much radiation can be tolerated by any area of body without damaging healthy tissue very much.
Tall Allen mentions that RT for pain relief is done a bit differently to RT to damage Pca DNA, and I found that the limits on X-rays prevent it killing Pca, and that the only really good RT was Lu177, but then my Pca in bones began to mutate to stop Lu177 working so I am going for Ra223 instead.
I asked my oncologist to send an order to UCLA because the PC is only in my bones. However, he is stalling because he thinks Johns Hopkins will get approval in May to do the scan and he is insistent that I first have the radiation done. One thing he mentioned, and I may have in wrong, is that JH has a less expensive/complicated radioactive traced, whereby the PSMA scan can be adopted all over the world. Again, I may have misunderstood him. All that said I'm thinking my next step is a PSMA scan.
I believe my sacrum and pelvic bones are consumed with mets. My oncologist did not think Ra 233 would be of much benefit (1/2020). I did not ask why, probably because of the listed side effects and avoiding the treatment sounded good to me at the time.
ADT alone, 0.3 (11/2011), 0.73 (8/2013), then added Xtandi (4/2016) and went from PSA of 76 to 10.6 in about 30 days. When ever I brought my PSA as low as it would go I would take a vacation. Stopped Xtandi and did IPT June/July of 2016, then went back on Xtandi and had one reading of undetectable 8/2017. Of course, I took a vacation. Everyone is different and responds differently to different protocols. Good Luck :-).
Don't be afraid to ask why. I've has to suffer a pile of outrageous side effects which nobody warned me about, and I got through all. I have a good QOL. The list of side effects for Zytiga make it look like it could easily cause heart failure, 3 of 10 items are about effect on heart. But Zytiga, and also I guess Xtandi muck about with adrenal gland which makes chemicals to regulate HR and vascular system. I now seem to have both hypertension, and hypotension, and docs are trying to figure out how to give pills to bring down high BP, and to stop be getting dizzy after standing up after being seated. I doubt there's a good fix. I won't die though from that because once on the bike all things change and the exercise seems to do much to make cardio vascular system work OK.But if I spent all day sitting down, man, that's a way to kill myself.
I try to walk a fine line between medication/procedures and not doing either. I have done well until recently. I was very active, like you, until October. I will go forth with the radiation in hope that it works and I can get back to skating, hiking and biking. I believe that exercise extends life. Glad to hear you have a good QOL and you are exercising.
I'd love to be able to ignore all procedures and medications. Unfortunately, the only way I've been able to stay alive with good QOL is to seek the best Pca treatments one after the other as protocol and availability allowed. The main thing is not to dither about, and when one thing stops working, get something else before Psa goes way up and out of control. I'm heading toward 74yo, but this am I cycled 77km at 24kph around urban routes, and I lost count of the number of other ppl 1/2 my age I overtook while riding to work or to university.
I think most young folks can't get fit because they are bossed into lazy habits by their mobile phones.
I have an I-Phone (haha) and I was very active until recently. I'm 62, until recently, younger people were amazed how good of shape I was in. Regarding when to start or stop meds, is a personal choice. Good luck on your journey and I hope the both of us are around many years from now
I don't have many options for treatment now, and I am trying to avoid more chemo, which is free from the local Govt hospital, but chemo of any kind is NOT likely to work. On the other hand, Ra223 seems like best idea I have at my stage where I have not had any skeletal breaks and while I have no Pca symptoms with Psa < 100.
There was a whisper of using Docetaxel with Ra223 but there's no approval yet of that and I see no point at all for chemo even while Pca is stressed out with Ra223, and I may also be stressed, with diarea and vomiting as short term side effects. From my previous 5 doses of Docetaxel in 2018, my white cells are a bit down, something that worries doc giving Ra223 just like he worried when he gave Lu177, but I sailed through Lu177 OK and am no worse, so I'll probably sail though Ra223.
If I did nothing, I can expect to lose QOL within months perhaps. I'd be just existing to avoid the pain, taking pain drugs, no cycling and so on. Might as well be dead.
But there is a possibility of surviving Ra223 therapy and then delaying Pca progression for much longer than if I do nothing.
There's always the feeling of dread when I think about it all.
My doc at Theranostics is willing to proceed with Ra223, so I'll grease the system with an initial payment tonight.
I amaze a few yungies with my condition, but really, I feel its very fragile and likely to collapse any time.
I'm at the same place you are. I'm not sure where you live, but I would check to see if there are any "mNRA - messenger ribonucleic acid" trials in your area. This is the method used to design the recent highly effective Covid-19 vaccines. To me it is the difference between treatments by trial and error, and treatments by design. I think this method will ultimately be the path to a cure. So, both of us need to hang in there. I go in for radiation this Monday for three to five days in a row. I hope it is successful so I can get back to skating and buy some time for a beneficial trial to come along.
For me, EBRT and IMRT didn't do much. Lu177 and Ra223 give nuclear particle radiation, much better at bombarding cancer DNA. I live in Canberra small capitol city of Australia, and we have had very few covid cases here, and our record nationally is very good compared to so many other nations who are in deep donga with this virus.
I have not heard about "mNRA - messenger ribonucleic acid" trials anywhere here.
My post RP psa was 31...similar to your...my pre RP was 12.3...a little higher than yours...My post RP pathology was worse than yours...but I'm on a much more aggressive treatment protocol from the start...RP then ADT + IMRT include pelvic lymph nodes. Hoping to get a good remission from this....time will tell.
Don't know if I asked you already...do you play ice hockey? I do. Back to playing 2X a week now.
My passion is inline skating. There are a number of clubs in the larger cities. The nearest one to me is DC. All have regularly schedules skates, and most hold special weekend events attended by skaters from all over the country. There are a few skaters that organize over sea skate trips which are real fun. If you play hockey, you may want to consider inline skating in the summer. I hope to get back to it after radiation. I hope you are able to reach remission, of course that is still my goal :-).
I did inline skating just before my 28 sessions of sbrt as I tried to get my cells in aerobic state as pc cells dislike oxygenated cells. I picked used missions and skated inline almost everyday as hickey rinks were closed due to covid. Stay strong brother!
I love skating because it requires skill and you can travel fast. I'm very competitive and practiced a lot. FYI: professionals can complete a marathon (26 miles) in less than an hour. I can't imagine how that must feel
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