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Sep 3, 2017 05:23PM
Thank you leapfrog! I wish we could add a separate pain introduction, as you did, to put at the bottom of our signature. Maybe I can think of some shorthand code, so we can quickly understand the other person's pain area and pain relief.
You have had unique pain challenges that I've never seen in anyone else. How do you keep your spirits up?
I have been on Fentanyl twice, for about 6 months at a time. My body quickly builds up a tolerance, so I have to rotate opiates. The patches here (not sure if they are the same as patches sold in Australia) are supposed to be for 72 hours, but that's never worked for me, only 48 hours for each patch. I think I was on 75 mcg, so yes, I'd say you have a high pain tolerance. ;-)
Can you tell me about skull mets? I don't have any mets in my femur or my skull. I was wondering if they are handled differently, since they are close to the brain.
I also find that distraction is helpful. I use crossword puzzles, Scrabble or Facebook to keep me occupied, particularly after I have taken breakthrough pain medicine.
I have had radiation in two places on my spine for pain alleviation. A side effect of the radiation was damage to my windpipe, so I can't do any aerobic exercise, because it's hard for me to catch my breath. I had just learned to run and was enjoying it, so I'm very bitter about no longer being able to run. I'm trying to get past it. My onc. has mentioned possibly radiating my left hip, but I'm hesitant because of my history. That's the area that hurts the most right now.
When I was first diagnosed with Stage IV in early 2012, no one warned me about building up a tolerance to pain meds, or needing a higher dose. I was quickly burning through my dose, then suffering from withdrawal ... every day. It was horrible. I'm thankful that I found a pain doctor who explains these things and now I can anticipate this and prepare for it.
I've been on each of these pain meds, in order: Oxycontin, Fentanyl, Morphine, Dilaudid, Oxycontin, Fentanyl, Methadone, Oxycontin.
Methadone was absolutely the best pain medicine, and it lasted a long time, I got almost 2 years out of it. Oxy messes up my breathing. I just learned about opiate resistance, which is when the body doesn't respond to opiates at all. The last time I was on Oxy., I was taking 30 mg 3x day. Right now, I'm taking 80 mg 3x a day with 20-30 mg for breakthrough. It's not helping the pain, and it hasn't since I started taking it. My doctor added 300 mg. of gabapentine 3x a day, yep 900 mg a day. I can't tell much difference, maybe my pain seems a little duller, but it's quite persistent. I've become frustrated with my present situation. My pain doctor is out on maternity leave, and the replacement, who is the medical director of the entire facility, encouraged me to "give it another week, and see if the gabapentin will work." I'm in too much pain for that. And my other pain doctor's office staff has been dragging its feet on making an appointment for me.
I'm trying to stay calm, but when I think about when it's my time to die, I want to make sure there are adequate pain supplies for me. This opiate intolerance has me a little scared, but I will just keep going, like I always do.
I hope others who have cancer pain will post a little about themselves, or a lot, like me.
Ronda -- Celebrating 5 years with Stage IV Dec. 2016, 5 years of marriage Nov. 2016. Extensive mets to lungs & bones. 9/13, subcutaneous skin mets. My life is Stage IV precious. Every day is a win! 5/16 Drug trial with DGC-0032 and Femara
2/14/2008, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
3/10/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel
12/19/2011, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2-
1/31/2012 Aromasin (exemestane)
12/19/2012 Faslodex (fulvestrant)
7/16/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
4/23/2014 Reconstruction (left)
11/21/2014 External: Bone
11/17/2015 Afinitor (everolimus)
6/1/2016 Femara (letrozole)