Pain
I am in so much pain (ribs, spine, jaw, hip) right now I don’t know what to do with myself. I’ve loaded up on morphine, ibuprofen, paracetamol, codeine, and nothing is even scratching it. How do we get through moments like this?
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Do you have a palliative care doctor? The causes of pain are very individualized and these specialists have the training to figure out their sources and an arsenal of treatments.
I was in a different situation (just discharged from a burn unit and developing rare SEs from radiation.) My palliative care doctor who was also an anesthesiologist initially put me inpatient on IV fentanyl and hydrocodone. Laser surgery to destroy nerves and a transition to oral painkillers followed while keeping the lowered pain level steady. Thankfully I don’t need him now.
The meds you have are all useful but the combinations and timing as determined by a pc specialist make a big difference in effectiveness. Sometimes you have to choose between pain and being zoned out. I hope you can find a doctor to manage your pain.
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Emiliamarty - I am so very sorry for the situation you are in. Unfortunately I don't have anything to offer but sympathy and hugs, as I really know nothing about pain management. I am real glad to see that Maggie has come along with some good ideas.
Maggie - Wow, I had no idea that you had had that sort of issue with radiation, or that that was even possible - the burn unit?! I am so sorry for that, but glad to hear that at least you've had some sort of positive treatment and are doing somewhat better. Sending good thoughts your way and wishes for continuing improvement.
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Thank you both, very very much. Finally got through to someone this morning. Palliative are visiting on Wednesday. It just feels like whack a mole at the moment. Today’s leading source of pain is the left cheekbone and eye socket! It’s not that the other sites aren’t hurting. It’s just that this one has pushed to the front.
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Emiliamarty - Are you taking any sort of anti-estrogen drugs? I'm asking because of the cheekbone/eye socket issue. My last CT scan showed a lit up "zygomatic" bone, i.e. cheekbone, and I wasn't surprised, because I can feel sore in that area; including up into my eye socket. Both my oncologist and I however were quite sure it was actually due to osteoporosis in my jaw joint; exacerbated by the anti-estrogen. Mine comes and goes and even the radiologist noted that that area is "very rare" for metastases, so I'm just wondering if you are absolutely certain that it is mets there that is causing the pain. Anti-estrogen drugs can really cause a lot of aches and pains.
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Emiliamarty, Have them check your trigeminal nerve (might require a referral to a neurologist.) My burn surgeon cut my left one with a laser. I have no feeling in that part of my face but that is preferable to the horrible pain. I'm glad that palliative is in the picture and hope they can help.
Threetree, The burn unit was thanks to my catching fire while cooking due to a fall when an arthritic knee buckled (had been told to "wait and see" before treatment ) which happened 6 weeks after finishing rads. The 20% of my body affected included my face, hands and front torso including the radiation field. There were signs then of radiation damage to my thyroid and esophagus but that didn't really blow up until six months later when I ended up back in the hospital on IV steroids and O2 with progressive radiation induced pulmonary fibrosis. It was touch and go for a while but I made it with one lung still working. That annus horribilis had started with osteomyelitis in my left jawbone after an abcessed tooth extraction leading my oral surgeon to figure I had cancer. He was right: breast cancer missed on three mammograms after a callback. It ended with me tearing the meniscus in my other knee which was treated immediately. The palliative care doc was a godsend during all this.
The burn surgeon treated my face so that I don't have visible scars with makeup and lasered nerves for pain relief (except in the radiation field which is off limits.) While I have to take steroids and live like I'm immunocompromised I'm managing OK. Precancerous cells were ablated from my esophagus and I'm having RFA to shrink my regrown previously excised thyroid which is deviating my trachea. I have a bone lesion in my acetabulum that can't be biopsied so is being monitored. I'm under all kinds of surveillance but that is way better than an unfavorable diagnosis. I consider myself fortunate.
There is a big difference between pain and PAIN. I still have pain but it is manageable with gabapentin and other meds. When things hit the PAIN level it is time to call in palliative care or visit a dedicated pain clinic. It doesn't mean that the end is nigh but even if that is so nobody should suffer. MOs and PCPs prescribe pain meds but the specialists have the training and experience to help when general pain relief fails. Wishing everybody here less pain and medical professionals who can help when pain escalates.
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Interesting. Yes! Exemestane. I do know there’s a met in the clivus though, also very rare, and I wondered if it could be related to that. Perhaps today’s MRI will illuminate.
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Good grief, Maggie! What a terrible experience. And yes, there is pain and PAIN.
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Oh Maggie - I had no idea you had been through all of that! I can't begin to fathom what that would be like. I am just so sorry. I'm just so glad that you are here and such a knowledgeable and welcome presence on this BCO site. I've always appreciated your contributions, and wish you continued healing and luck.
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