[clairesParticipant]

hi all.. my brother has just been diagnosed with multiple myeloma this week and in so much pain even on the morphine he’s still in agony round his ribs , back, chest and sleeping all the time, he’s lost so much weight over 3 stone since Jan this year. Just wondering if this much pain is normal for this or could this be advanced? He’s not started any treatment as yet. Seems to be taking forever, he got marrow  biopsy done two weeks ago and an MRI, nothing showed up in MRI just on biopsy and raised calcium levels. We’re all just worried and he’s not back until next week to talk to consultants about it but his pain level is through the roof and he looks awful, we’re all worried sick.   Anyone experienced the same?   Thanks

[louishenryParticipant]

I’m surprised at this much delay. Time to pester and ask what’s happening I think. When I was diagnosed they wouldn’t even let me go home and started treatment straight away. The good news is that when treatment does start he will feel a lot better quite quickly.

[taffdParticipant]

Hi Claires,

How much morphine is he on and what kind?

I started on 2 tabs of slow release per day and 6 doses of oramorph. Was well spaced out but the pain became manageable and changed to stiffness. There was some breakthrough pain when in certain positions but it wasn’t too bad.

[clairesParticipant]

Yeh seems to be taking weeks to diagnose and start any treatment, he’s so ill with it and can’t get out his bed today now and can’t even walk. Sleeping constantly too. He’s got an apt tomorrow, hope they keep him in to see what’s happening. He’s on MST 20mg morning and night and sevredol 10mg for breakthrough pain. He’s had cancer before last year in the head/neck and never been this ill even with the radiotherapy. We all feel so helpless and don’t know what to do to help. He’s not even talking to anyone now in the past two days.  Did you get something to take your calcium level down if it was raised?  Thank you all x

[louishenryParticipant]

When I was first diagnosed, nearly two and a half years ago now, I was in full panic mode at the unexpected diagnosis so I’ve no idea what the initial treatment was but there was something to bring down the calcium levels. There should be a specialist nurse at the hospital haematology who can talk all this through with you and your brother or if that’s tricky to arrange try the helpline on this site.

[clairesParticipant]

Will do. Thank you

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