Hya Andrea Ian and Peter  Iv just completed my 4th cycle of the CDT . My para proteins are down to 4 . Have had an appt at sheffield hallamhire to discuss stem cell transplant. The harvest is pencilled in for around early August and the transplant around early sept. All being well. Not looking forward to it as you can imagine but now on this…[Read more]

hi Helen, jan and andy have been reading your posts it all sounds very daunting. I have just started cdt treatment into my second cycle. my paraproteins have gone down to 8 from 29 already but I am not taking anything for granted as they will probably go up and down over the next few months.  I have been diagnosed for a year now.  first s…[Read more]

hi andrea,  ian and peter.  hope you are all well and coping I have just completed my 2nd cycle of cdt and my paraproteins have gone down from 29 to 8 already.  hope they stay down fingers x.  but im not taking anything for granted.  havnt got the light chain results back yet so im hoping they have gone down as well.  I can cope with the thali…[Read more]

hi mike how are you doing have you started your treatment yet.  I am just completing my second cycle and my paraproteins have gone down from 29 to 8 already.  fingers x they stay down . havnt got the latest light chain results but they had fallen before I started treatment from 7000 to 5000.  good luck.

hi peter glad things are improving for you, feeling fine except I feel really shaky and dizzy mainly until lunchtime not sure if its the thalidomide which I take at night or the days off when I don’t have the dex.  Its just my first week so im not sure what to expect.

Hi Ian and Andrea hope you are both doing ok have been watching your posts as I have just started treatment as have gone from asymptomatic myeloma to active myloma my paraprotein in 26 and my free light chains have jumped to 7,000 which is high risk for kidney damage.  everything else is stable.  I have just gone into the myeloma x1 trial and r…[Read more]

It’s good to hear positive comments . I’m just about to embark on my first treatment after being. Asymptomatic for a year. Stem cell transplant in about 6 mths if all goes well with the initial treatment. Good luck guys  dawn x

Hi mike good luck I don’t think il be far behind u x

My name is dawn Cartlidge  god knows y I put my username as cart daw lol

Hi Andrea hope all goes well for u. I may be going down the same route so please let me know how u get on. My para proteins are up to 24 so bloods to be rptd in 1 month.  If light chains r high May start treatment due to new guidelines although I’m well with no bone damage

Hi Michael I wish u well. Iv been to see cons today and para proteins have gone up to 24 . So all bloods have to be rptd in 3 weeks. If anything else raised then ie light chains may have to start treatment also   due to new guidelines. Otherwise I’m well . MRI ok

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 sm…[Read more]

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 .

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.

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 wee…[Read more]

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…[Read more]

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