Radiation as Palliative Care

Hello everyone. I hope it's ok that I'm starting this thread because I did a search and couldn't find anything specific to this topic.
I'm looking for feedback from anyone who has received Radiation treatment for palliative purposes only. What was your experience with it? Did it actually help ease the pain or did it aggravate it? Have you read any studies for or against it?
My background: I have bone MBC affecting cranium, bilateral ribs, femur, bilateral hips. When scanned last year they also found a substantial mass growing off my R Iliac bone. I'm on monthly (lunar, 28 days) Faslodex, only one infusion of Zometa so far, and almost a month of Verzenio. On and off Prednisone 10 mg daily, and 7.5 mg morphine nightly. Cannot take NSAIDs. My MO offered a referral to the Radiation Oncologist. After much Insurance negotiations & scheduling conflicts, I was finally able to complete my first ever 5-day round of Radiation on 1/24/25.
My experience: The RO tailored my treatment for a 5-day round, low level radiation (not for reduction of the mass,) focused on ribs & hips (the most affected and painful areas.) Day 1 already felt uncomfortable. By day 3 I was screaming in pain. The RO and team kept insisting that it was "just the hard, uncomfortable treatment table" and the length of time I was required to lie down on it without moving. The RO finally agreed to temporarily switch me to Dexamethasone 2 mg (from my Prednisone) and prescribed me 8 tablets. The first 3 days I was on Dexa, it felt like heaven. I'd forgotten what it felt like to be pain-free! Unfortunately, 5 days after my last radiation treatment and 1 day after finishing off the Dexa Rx, I've already been having twinges of pain again, in both hips, tailbone, ribs, and now the addition of my left scapula. I was assured that the treatment would actually have a "long-lasting pain-reduction effect." I'm not experiencing that. On the contrary, I'm concerned about the increasingly returning pain, the additional pain, and being told by my MO's CRNP to NOT resume taking my Prednisone, because they want to have an "assessment of my pain level," I guess???
Hope to hear from others experiencing similar situations, and TIA!
Blessings and Best Wishes.
Comments
-
I'm sorry that your palliative radiation led to increased pain. According to the first reference it is helpful in 70% of cases but not so for 30% of them. The second reference discusses how genetic makeup causes some people to have more serious reactions to radiation. Current meds can also influence radiosensitivity. The third article discusses observations about radiotherapy reactions in about 10% of people taking CDK 4/6 inhibitors. All of these things may be relevant to how you responded to radiation. It's possible you are experiencing a temporary pain flare and eventually will have a reduction in pain.
https://www.ctro.science/article/S2405-6308(20)30099-9/pdf
My background: I ended up with grade 4 toxicity after whole breast and axillary radiation for stage 2 IDC. Radiation injured my lungs, esophagus, thyroid, brachial plexus nerve, nerves in the radiation field and caused breast LE. IV steroids saved my life. I now have an indeterminate bone tumor in my acetabulum which looks like a met but can't be biopsied due to a >70% chance of breaking the hip. The pain wakes me at night despite gabapentin/steroids so the bone tumor radiologist thought it would be a helpful to treat it with palliative radiation. My MO thought this would be OK since the radiation would be more focused, lower dose and far from my lungs but my pulmonologist was of the opinion I have a genetic predisposition to radiation overreaction. I decided not to do it and put up with less/broken sleep. That is where this research originated.
Hopefully you are experiencing a pain flare and you will be among the 70% for whom palliative radiation is beneficial. Otherwise maybe dexa could be added to your steroid/opiod routine. I hope something helpful will come out of this.
0