Just wanted to share my recent experience in case it’s of any help to anyone.
I have widespread bone mets (left hip/thigh, pelvis, up and down spine, rib, skull) diagnosed 13 wks ago. On letrozole, Ibrance (Palbociclib), Zometa infusions (Zolendronic acid - bone strenthening), had metal rod hammered into left thigh 7 wks ago to reduce risk ifca fracture and 5 rads to left thigh.
Recently had terrible pain in my left hip / thigh / leg (onc said due to zometa but surgery and rads probably added to the mix).
I was already taking 2 paracetamol four times/day; 1 diclofenac three times/day; 100mg Gabapentin three times/day, 5mg longtec 12 hourly and 3ml shortec for occasional breakthrough pain.
Cold made the pain worse … dreaded getting up to toilet … heat pack and toilet seat covers helped a tiny bit.
I increased longtec to 10mg and needed more shortec but still waking at 430am in 9/10 pain which lasted for a few hours. I tried all kinds uf diversion tactics to get me through it. I upped the longtec from 5 to 10mg in desperation over a weekend. GP added ondansetron three tines a day after a visit to A&E for nausea/vomiting on the mon night!. This caused horrific constipation and pain no better. GP wanted to up the longtec but that wasn’t going to help the constipation aaaaaaargh.
I asked for referral to Palliative Care team and seen straight away. Stopped ondansetron, started laxido (quick relief from constipation … hoorah!), reduced longtec to 5mg and doubled the gabapentin.
Gabapentin is my new best friend!!! Instant pain relief … woke next day with alarm … minor pain! OMG it was fantastic!!! Obviously nerve pain had been a big component of my pain. OK so I had to get through a few days uf side effects but needing to sleep 18 hrs out of 24 for a few days was a fair swop for the pain.
Whst I have learnt:
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although my husband and I were in despair there was a way through. Use your local palliative care nurse/doc. Knowing they will always support me in the future makes me feel a HUGE amount better in itself. They are the pain experts and all I had to do was ask my GP to refer me.
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never be without a warm toilet seat cover … packet of reusable 2 for under £10 on Amazon
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bone met pain might be helped by gabapentin
- there are many different laxatives … do your research! Laxido is a ‘softener and mover’ and was perfect for severe meds induced constipation … easy to control dose yourself.