Follow up on RILP

[Kentucky1]

Just wanted to share my situation dealing with consequences of an adverse reaction to some pallative radiation treatment I received. I posted a while back that I had been diagnosed with radiation induced lumbar sacral paraplexy that had affected my left leg to the point of no longer being able to walk. It progressed to being very painful with my left quad remaining in contraction 24/7. Physical therapy treatment reduced the pain but I was still unable to walk. What happened next really through me for a loop. Once the leg pressure was released the pressure went into my intestinal tract and I ended up with a perforated sigmoid colon that required surgery ending up with a colostomy. Also developed a fistula that continues to be an issue. So to recap, the neurologist diagnosed me with RILP which has fried my quad and the surgeon says I have radiation enteritis which resulted in the perforated bowel. I spent 22 days in the hospital after surgery and am currently on my 3rd week of rehab trying to get back to normal as far as weight loss and ambulation. I'm weak as a kitten but slowly improving. I'm told that it may be months before I get back to my old self barring any other complications. So although very rare, less than 3% keep in mind that radiation therapy has some potential for really adverse side effects.. Strangely enough my RO that did the radiation treatment said he doesn't think his treatment was the cause, but could offer no other explanation,

[Scout4answers]

Hard to know the source. I had a similar problem with my leg but not as severe as yours.

Hope you get a complete recovery.

[Bkraus1]

Hope the nerve symptoms improve over time, you could benefit with Neurontin or Lyrica to help reduce some of the nerve pain.

[Kentucky1 in reply to Bkraus1]

The Neuro has me on Trileptal to help with the quad.

[Kaliber]

sorry to hear of your danged issues brother , I’m having some locked up ( in hard spasms) in my calves at night too. Comes and goes. Hurts like hell tho yayahahahaya, I know yours is at least as painful and probably more.

The good news is that you are recovering and have hopes of return to , more or less, normal. Thanks for this useful “ heads up “ about some SEs no one talks about much.

Hope you get back to your comfortable self in no time at all buddy.

💪💪💪❤️❤️❤️

[msnik]

Dear Kentucky1,

first, thank you for educating us about the possibility of this rare but possible side effect.

I am sorry to hear about all of your pain and suffering.

I looked at your profile and see that you are a retired Pharmacist.

Regarding the RO saying he had no other explanation, do you think getting a second opinion would be helpful?

best of luck to you for continuing recovery.

[Kentucky1 in reply to msnik]

I think he was worried about being sued and wanted to plant the idea of doubt in my mind. I have no intention of suing him. If the surgeon says it's from the radiation and the neuro does also, I have to think that's the cause.

[treedown]

How long ago did you have radiation?

[Kentucky1 in reply to treedown]

I had 2 rounds the first was in January 2001 it was 5x5 and the second was in May 2022, it was just 2 but higher intensity. The leg problems started shortly after the second round with the leg drawing up and across my body. It progressed over time until by September I was in a wheelchair, unable to sleep for more than 2 hours at a time without waking to physically straighten the leg. I did massage therapy which provided temporary relief and dry needling which also helped for a short period of time.What released the quad and reduced the pain were 2 sessions of NDM done by a PT, that's when all hell broke loose. Literature on RILP says it can occur days,months, or even years after radiation treatment.

[treedown in reply to Kentucky1]

Thanks for posting. Always good to know what lurks beside the beast. By now the amt of radiation I have had has me wondering whats will get me first but if its 21 years from now I will feel lucky.Hope it all clears up for you and your QOL gets back to where you want it.

[carbide]

So sorry. I am also a member of a 3% adverse reaction Club. My issue was osteonecrosis of the jaw caused by xgiva (a bone medication) given as a protocol to prostrate cancer patients.3-1/2 years of pain. I guess shit just happens.

[j-o-h-n]

As the elephant said to the zoo keeper who was cleaning up his cage "Trust me Howard, Shit does Happen"........

Good Luck, Good Health and Good Humor,

j-o-h-n Monday 05/15/2023 11:34 AM DST

[Rev214]

Very sad that proton beam radiation is not recomended more often. Proton does the least collateral damage of anyform of radiation. They can control to the mm its depth of penetration. IMRT etc, radiation enters one side of body and exits the other damaging all healthy tissues in line with the target. Less than 1% sideffects. I've done mine twice at Procure.com in NJ. Couldn't be happier with the results!

[Jim53]

My radiation induced lumbar plexopathy began about 5 months after my 10 radiation therapy treatments. It progressed rapidly so i was unable to walk more than 4 to 5 steps without severe cramping pain in my quadraceps. An EMG showed almost complete denervation of the qudracepts , the gluteus medius and the sartorius. All muscle groups did show some evidance of nerve regeneration on the EMG. The neurologist put me on gabipentin which didnt seem to help much. My oncologist started me on ms contin which helped greatly with the pain, and as the pain was controlled i was able to walk more while using a walker. No one was able to tell me how long the radiation lumbar neuropathy would last, or whether the damage would be perminant. Like you the radiation oncologist didnt think their radiation treatments were the cause of my lumbar plexopathy. My radiation plexopthy was associated temporaly with the onset of severe lymphedema in the same leg. My own research found that it is not uncommon for lymphedema to present at the same time as the plexopathy. I found that the muscle cramping is greatest at the times of denervation and again with reinervation. One reference that said radiation plexopathy that presents early after the radiation has a greater chance for significant recovery. It has been 10 months since the onset of my lumbar plexopathy, and 7 to 8 months since its greatest severity. About 2 to 3 months ago i had rapid return of quadracepts strength. The recovery has progressed to where i can walk about 200 yards now using a cane primarily for balance. I am still dependant on the ms contin for pain controll to facilitate my walking, but i am only taking 30 mg once a day in the morning. I hope this gives you some encouragement that there is a significant chance of near complete recovery of motor function within a 8 to 10 month time period in my case. I wish you well.

[Kentucky1 in reply to Jim53]

Thanks for sharing your experience, it does give me hope that I can get back to a more normal life. What did your RO think was the cause, if it wasn't the radiation treatments? I'm getting by with Percocet for the pain, interesting that the pain is pronounced at deinervation and again at reinervation. Hoping in time to walk again.

[Jim53]

My RA did not offer an alternative cause for the lumbar plexus neuropathy. Just said that based upon the window used and the total radiation dose given it was highly unlikely to be caused by the radiation. On the other hand the neurologist who is the head of the peripheral neuropathy clinic at the university of Michigan, had no doubt that it was caused by the radiation therapy. My radiation therapy was not delivered to the prostate bed. I had a fractured hip due to tumor invasion of my hip and pelvis. I had a total hip arthroplasty, followed by radiation to the implant to kill tumor cells that might have spread to the soft tissues around the implant when it was hammered on place. I'm improving enough that I'm considering coming off the ms contin in the next few months. My daily dose has been low but the 9 month duration should have created a physiologic dependance probably leading to a difficult withdrawl.

[Kentucky1 in reply to Jim53]

Interesting that both our RO's have said it wasn't from their treatment based on their overlays of the treated areas. Mine was to the pelvic bed and to the head of both femurs. Both my neuro who did the EMG and the surgeon have said it was radiation induced. I've got to agree with them since the RO can't give me any other reason. I wonder if they are taught to deflect responsibilty. Best of luck in your weaning off of the morphine, I'm hoping that I can reduce my Percocet soon to avoid the same issue.