[cartdawParticipant]

hi all my friend has a friend who has had myloma for 20 yrs and is now in her 70s.  started with smouldering myloma but now myloma.  She apparently hasn’t always been well but has treatments and remission etc. and is still here. so I try to keep as positive as possible.  Most of the time myloma is at the back of my mind ( I was diagnosed as a smoulderer in June this year) apart from my 8 week hosp appts, then I get a little bit anxious.  – Dawn xxx

 

[cartdawParticipant]

Hi Michael it’s dawn I received ur message thank u .   Ur  post is interesting my plasma cells from the biopsy were 70% so  does this mean I may be offered treatment in light of this  new criteria .

[cartdawParticipant]

hi its dawn. does anyone else feel tired with smouldering myloma although my iron  blood count is normal i feel extremely tired.  I work two twelve hour shifts per week as a midwife so busy but more tired than usual.

[cartdawParticipant]

hi chrissie, im dawn. I too become anxious around hospital visits and I have to be seen every 8 weeks as although im smouldering my abnormal cell count from my bone biopsy was high. 70%.  although im well with no effects so far.  I would be interested how you get on with the aloe vera etc.  will try anything.  i feel im living my life in 8 week blocks although im trying to be positive and just getting on with it.

[cartdawParticipant]

hi brian  my name is dawn I think iv mentioned earlier that I was diagnosed with smouldering myloma in april im 57. I am with what appears to be a very good team of haematologists at chesterfield royal. and appear to be quite knowledgeable re myloma.   I asked multi-vits and they said it wouldn’t hurt re iron count and well=being etc. but water is the one that seems to be mentioned all the time for kidney function. I would be interested if anyone has any proven alternative therapy at this stage.     I notice that some people don’t appear very happy with their consultant but I think all hospitals share knowledge re all their myloma patients via video link with other hospitals. asking advice re treatments etc.  I know chesterfield does.

[cartdawParticipant]

hi brian  I have also been diagnosed with smouldering myloma i am 57 yrs and feel healthy at the moment.  I have blood tests every 8 weeks and so far all still stable.  my paraproteins are 21,   Iv had the bone marrow biopsy which was quite high apparantley but the skeletal survey was normal thank goodness.   I hope to have a few years yet just smouldering

[cartdawParticipant]

thank you for your messages of support all of you , I am just getting my head around it.  Im 57yrs old and work part-time as a midwife so Im happy to smoulder  for a few years yet but hopefully will be better prepared if I have to have treatment.  I have to have my bloods taken every 2 – 3 months at the moment.

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