Ouch!: Talking To An MBC Patient About Chronic Pain
Living with chronic pain isn't fun for anyone, but it is especially difficult when you are already living with a cancer diagnosis, too. Metastases can cause various degrees of pain, depending upon their size and location. Liver met pain can differ significantly from lung met pain, for example. In this interview, I sought out the experience and advice of fellow Metavivor, Alia McHugh, who has been living with chronic pain from bone metastases since her diagnosis. She shares with ABC information about her mets, pain, treatment, quality of life, pain management, and plans moving forward.
Chronic pain from bone mets
Alia, can you please share with our ABC Community a bit about your metastases?
"My last scan was in November, and I have mets in both of my iliac bones (back of my hips). I have a met in my T12 which was very small on my last scan. I also have a tiny spot on my skull (kind of near under my left eye area) and another on the back upper right side of my ribs (I forgot what it's called). I had a met in my T6 but had radiation a year ago because it was causing intense wrap-around type pain in my right front rib area."
How long have you had these mets?
"I was diagnosed with bone mets on August 5, 2019."
What does the pain feels like? (Chronic, sudden, certain times of day, triggers?)
"The pain I currently have is all in the right iliac bone. I would describe my bone met pain as feeling like someone basically kicked the crap out of that area. If I touch it it feels like I should have a gigantic blue and black bruise because it's so tender. That's usually how it feels, like a horrible bruise from being kicked super hard. When I bend over for more than about a minute (for example, if I'm trying to scrub the bathtub) it starts to just ache and throb on top of it all. This also happens if I do any sort of activity (mostly cleaning) for more than about ten minutes. I will have to sit down and take a fifteen-minute break. At night I cannot sleep on my right side anymore because it hurts too much and I have noticed that when there's a significant drop in temperature the pain flares up pretty badly."
What is your treatment?
"My treatment is Ibrance and Anastrozole plus an Xgeva bone shot every month."
What treatment/medicine has your doc given for pain reduction?
"For pain, I take extended-release Oxycontin every 12 hours and I also take instant release Oxycodone every 4 hours as needed for breakthrough pain. I'm also on Gabapentin 3 times a day as it helps with nerve pain. Unfortunately, even on all this medication I still have days where I have to listen to my body and just stay in bed. It recently snowed for example and I was in bed for two days (that temp drop trigger). Hot baths help a lot but I have to have a bath pillow to sit on which is fine. I use bath bombs and Epsom salts which seem to help a little. Although I live in Idaho, I do use cannabis (THC) when I visit my family in Seattle quite often. I find it helps me a lot, and it really sickens me that it's against the law in Idaho but I can legally be on an enormous amount of Oxycontin and Oxycodone. That will never make sense to me..."
What other things you find helpful for pain reduction?
"I'm really hoping that I will be able to have palliative radiation to that area for pain relief because I'm on heavy narcotics and they make my ADHD go into overdrive (forgetfulness especially, super scatter-brained... Basically I feel like I'm missing out on life because the opiate pain meds make me forget so much. My short term memory is horrible). My right iliac bone met is the only one that causes me pain even though the met in my left iliac is about twice the size. Unless my bone scan tomorrow shows progression. Either way, at my next appointment, when we go over my scan results we are most likely going to plan radiation to that area so I can hopefully at least go down to a lower dosage of pain medication. The side effects are really starting to mess with my quality of life. My oncologist has always told me from the very beginning that his number one goal is that they can provide me with the best possible quality of life while I'm still alive."
Share your experience with MBC bone pain
Do you have pain from bone metastases like Alia? Please share any other ideas for pain treatment and management of bone metastases with our ABC Community!
Do you have an MBC mentor/mentee?