Coping with pain

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Thank you everybody who shares on this forum, nice to know you are there.

Would really appreciate some guidance on improving matters for my husband, 64. Diagnosed with quite an aggressive PC in 2017, RP but unfortunately it had already spread to hip. HT controlled things for about 6 months, then docetaxel which worked for another 6 months; enzalutamide worked for another 4, then another 10 cycles of docetaxel, during which PSA continued to rise (though more slowly), until it fell slightly in the last cycle in Jan. Now at 56. Latest scan showed no new mets but one in hip is larger. Now on dexamethasone only.

Issue now is that having been able to live a normal life till Jan, my lovely husband has serious pain in his pelvis, and can now hardly walk. The onco (who is quite responsive) wasn’t worried because of reassuring scan, thought it could be a small fracture or the drugs, and just suggested co-codamol, but that only takes the edge off it. I understood (from a different onco when first diagnosed) that they could control the pain by radiotherapy but this onco is keeping that ‘for later’.

I’m beginning to think 'later’ is already here! Any ideas on questions to ask the onco when we see him next week, or possible treatment options?

  • Hi Happy camper

    Pain is a terrible thing, the oncologist likes to keep radiotherapy as late as possible, it’s one of my plan b/c treatments, I take co codormol but have a back up of tramadol, stronger and not for everyone, there are other medications out there, just depends how the oncologist or your doctor sees what your husband could be ok with. 
    I would definitely ask for a pain management see what they say.

    Stay safe

    Joe

  • Thanks Joe, very helpful and hope you are doing OK

  • Hi

    There are good days and bad, you hail the good ones and get through the bad ones, I presume he is on one of the hormone treatments which helps. I’ve been on mine for five and a half years now along with enzalutamide which I see he has had.

    Stay safe

    Joe

  • The thing about Radiotherapy is that they can only use it once, so they will delay so long as they can.

    Bone pain is pretty much the worst - partly because the cancer is growing in a tight space, so is applying maximum pressure, but also because the blood supply to bones is poor, so it's hard from the painkillers to get to the pain.

    Paracetamol-based painkillers like co-codamol work best if taken regularly - usually so that he gets 1g of paracetamol every six hours. If that isn't enough, they can add in another drug, but keep taking the 6hrly paracetamol, because it usually has no side effects at all at that strength, and it does 'take the edge off', so a smaller dose of stronger drugs  (which usually have side effects) will be enough.

    I hope that makes sense!

    Also, ask for a referral to the hospice team; most hospices do outreach, and they are the 'pain control experts'

    - - -

    Heinous

    If I can't beat this, I'm going for the draw.

    Meanwhile, my priority is to live while I have the option.

  • Very clear and helpful, thanks