[claireyParticipant]

Hi everyone, I’m 35 and currently going through blood tests and awaiting haematology appt mid April, everything I have found so far is from drabs and drabs from gp and google.
I have paraproteins in my blood and just got the serum test done today. Can anyone please advise me if they have been in this ‘unknown’ position and what to expect?
Thanks in advance

[shaun3Participant]

Hi Claire,

sorry to hear that you’re undergoing tests which might detect Myeloma. Really hope they’re wrong. But just two thoughts spring to mind:

1. Waiting until mid-Apr for a haematology appointment feels like a long time to me. Early diagnosis and treatment is key so I’d be pushing for an earlier appointment.

2. There’s a really good booklet for newly diagnosed Myeloma patients which helped me:

https://www.myeloma.org.uk/documents/infopack-for-newly-diagnosed-patients/

Sending all positive vibes your way.

Shaun

[leicsladParticipant]

hello claire i was diagnosed with myeloma at the age of 61 paraprotein count of 36 after diagnosis i had a bone marrow sample took no problem gas and air did the trick. blood tests every 8 week then hospital visit to go over figures. told to just carry on with normal life. do get a bit tired, fortunately i am retired so easy to rest when tired. i play golf regular and do everything i have always done, i am not on any meds for myeloma, i was diagnosed 4 years ago and i have annual pet-scans to check for any bone lesions. which i have done at a local hospital. sorry i cannot do anything about the waiting, it drives you mad but you learn to rise above it. just keep thinking of the benefits of early diagnosis, believe me there are some. i am on my hospital visit next week. hope ypu get support from family don,t forget it isn’t easy for them. hope this helps a bit. don,t be afraid to ask questions.
steve ( leicslad)

[hflanParticipant]

The above post has given me so much hope after my dads recent diagnosis. I have everything crossed that he can live a normal life and also enjoy his retirement and golfing as normal. Thanks, lovely to read.

[zsazsaParticipant]

Hi Steve,

Feeling positive after reading your journey so far. Very interested to enquire what your results were after you last hospital visit you’ve mentioned if you don’t mind sharing. I have recently been diagnosed with Myeloma and my parAproteins were sitting at 32.9. Hat my Full body scan and my CT Thorax Abdomen abs Pelvis and tomorrow my Bone Marrow Biopsy but just trying to remain positive about it all…

Thanks,
ZsaZsa

• This reply was modified 5 years, 1 month ago by  zsazsa.

[zsazsaParticipant]

Hi Steve,

Feeling positive after reading your journey so far. Very interested to enquire what your results were after you last hospital visit you’ve mentioned if you don’t mind sharing. I have recently been diagnosed with Myeloma and my parAproteins were sitting at 32.9. Hat my Full body scan and my CT Thorax Abdomen abs Pelvis and tomorrow my Bone Marrow Biopsy but just trying to remain positive about it all…

Thanks,
ZsaZsa

[leicsladParticipant]

hello zsa zsa don’t worry about the bone marrow biopsy just keep sucking on the gas and air and enjoy the tea and biscuits after. just to re-cap i was diagnosed 4 yr ago my paraproteins then where 31 since then they have fluctuated a small amount going as high as 36. my last visit to hospital was in april 2019 they told me then because my readings had been stable for a while they didn’t want me at the hoapital till april next year pending blood test results that i have done at the doctors 3 monthly any problems hospital will ring me. my latest paraproteins where 31. hope this as been of help and reassurance. i also have once a year a pet scan no problem just time consuming. good luck for tomorrow keep in touch
regards steve

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