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: - 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. - never be without a warm toilet seat cover ... packet of reusable 2 for under £10 on Amazon - 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.
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