[bijouParticipant]

Thank you Andy, I guess I’ll just have to wait. Apparently I’ll be going into hospital on Tuesday for more tests ( biopsy ? ) . How long am I likely to be in for ? , It is my daughter’s wedding on the following Saturday and I need to be out of hospital by Friday so that I can travel to the hotel prior to the wedding. My head is spinning with it all  !

[andygParticipant]

Morning Bijou.

Have they told you that you’ll be staying in? I’m not sure why you’d need to. I’ve never needed to stay in overnight for tests. A BMB( bone marrow biopsy) doesn’t take long. It’s just a big needle into the hip bone. It’s uncomfortable some say painful it all depends on your pain threshold. I only have a local some have gas and air whilst a few get sedated for it.

I know there’s a 24 hour urine test for Free Light Chains(FLC) but that’s usually done as an outpatient. That could explain why the results aren’t forthcoming. The measure of PPs (paraproteins) is a simple blood test but in some patients the PPs don’t show. So they measure your FLC instead to see how active the myeloma is.

With your daughter getting married a week on Saturday I would mention it to your consultant and they will work round your wishes. IE. starting treatment after the wedding and making appointments to fit in with you being away. If you feel a bit intimidated by the consultant have a word with your specialist nurse first. It’s your life your body don’t get pushed into doing something that interferes with a big day in your life.

Of course I don’t think you’ve been officially told you have myeloma yet or have you?

Every day is a gift.

Andy xx

 

[caroledParticipant]

Hello Bijou – with regard to your blood tests it could be that the initial tests showed some abnormality and they wanted a 2nd test to test for these “light chains”. I don’t think the light chains are routinely checked in initial blood tests but I believe that there are only a couple of centres where the testing of light chains is done so the blood sample has to be sent to one of these which is why it will take a bit longer. Like Andy says, a 24 hour urine test can be undertaken which can show up various factors. Keep smiling!! (I know – easier said than done!)

[bijouParticipant]

Thank you – this has been the longest week of my life and it’s only Wednesday !! I don’t understand how I can be told I may have cancer and then just left in limbo like this. I know from the cat scan that I have lesions on my ribs , my breast bone, my hip, my shoulder blades and in several places in my spine. That does’nt sound like first stage! – and surely I should be having some treatment as a matter of urgency. Sending me home for 10 days in limbo like this is just agony. I cannot believe that it takes 7 days to analyse a blood sample 🙁

[andygParticipant]

Hi Bijou.

The lesions by themselves don’t necessarily indicate you have myeloma. That’s why other tests are required to confirm it’s myeloma.

Treatment, if you have myeloma, will be given if you fulfill certain criteria it’s called CRAB I think it stands for Calcium, Renal, Anaemia and Bones. If you don’t fulfill the criteria you may not need to have treatment and you may be classed as having smouldering myeloma which means though you have myeloma it’s not causing any problems and can be left untreated until it starts causing problems if it ever does. Some smoulder for years without ever needing treatment.

The lesions could be Plasmacytoma and will probably be treated with radiotherapy.

They can’t treat you till they get the diagnosis right. I can understand your frustration but getting the right treatment, if it’s necessary, is key.

By the way we don’t stage myeloma in the UK.

Every day is a gift.

Andy xx

[cygnetParticipant]

Hi Bijou

How are you?

Sending love & hugs
C x

[Author]

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