[becki29Participant]

Hi everyone, hoping for a little information and advice please.
My dad was diagnosed 6 days ago with multiple myeloma he was told this by a go over the phone and had no idea the test he was having was for this.
The information I’m wanting is what’s going to happen next. He as already been told he as brittle bone in his spine and having a full bone scan in the morning and been referred to hematologist a few weeks ago but heard nothing.
At this moment in time all we know is what we have read online and we don’t even know what stage he is in.
As you can. All probably understand we are worried, confused and angry at not know anything and basically having a phone call saying you have cancer and nothing else explained.
Thank you in advance x

[robert0439Participant]

Hi Becki,
Sorry to hear that your father has been diagnosed with MM and also in the manner which he was informed, which was not very tactful to say the least. Where is bedside manner which should have been there?

May I ask what test did he have for him to be diagnosed with MM?

You also say that he has brittle bone issues. Again, may I ask what tests he has had to determine this?

Once the scan has been completed and the results obtained, then I would push to get to see the consultant as soon as you can.

Kind regards,
Robert

[becki29Participant]

Hi Robert,
He as had on going health issues which resulted in a hip replacement that got infected so had to be removed and 1 yr later a new one put back in but he could not shift the infection this was around 12 months ago. He as suffered ever since with pain in his back so he went to the gp and they sent him for xrays which showed fractures and lesions of the spine and crushed vertebrae. The doctor then did blood tests and Bence-Jones urine test which came back abnormal and the results online say something about a light chain, hope this helps. At the moment it’s like blind leading the blind. Been in touch with gp today and he wants to wait for the dexa scab then he will refer to the next set of specialists. X

[rosaryParticipant]

Becki

I was diagnosed 3 weeks ago so have been getting to grips with some of the key initial questions you are asking that cause so
Much confusion and and anxiety. As many have said Myeloma is very individual and all circumstances are different but If I can be of help with these first stage questions and what I did to get some answers including problems in my spine please email me to Stewartalastair@btinternet.com

[becki29Participant]

That’s great thank you. X

[iainf365Participant]

Hi Becki,
Very sorry to hear about your Dad’s diagnosis – and dismayed at the way this has been handled. My own diagnosis came about as a result of several tests over a period of weeks. At each stage I was talked through possibilities. I had blood tests and finally a bone marrow biopsy before it was confirmed. I’d suggest that is the minimum required for such a diagnosis. I’d caution you to not get too carried away by looking through forum’s or on Google to get advice. Your Dad is an individual and I’d suggest that you need to be much more questioning of the medics. Chase the haematologist. Blood tests are the key in all of this. I was fortunate in that I was guided through every step. Don’t be afraid to pester if you have to. What tests were done and what led them to conclude it was Myeloma? What treatment plan to they propose? Check out this page on this site – https://www.myeloma.org.uk/understanding-myeloma/diagnosis/
Hope it all works out.

Best wishes,

Iain

[becki29Participant]

We are all still disgusted in the way it’s been handled and I letter will be going to the practice manager once we are all over the shock.
Been told today that once his dexa scab as been done then the referral for haematologist will be done but to me this should already be getting done. It’s difficult not to look on sites because we have been left know the diagnosis and nothing else so wanted to get our head around it and not be left in the dark. Fingers crossed things start moving a little quicker now. X

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