HI Andy – thank goodness you are getting back to normal – we missed you!

Jane

Welcome back Andy – thank goodness you are ok – we’ve all been worried about you xx

jane xx

Thanks Jan.  My first SCT was in 1996 when my light chains were 5,500- and I had 5 years of partial stable remission- then another SCT in 2001 and my light chains were ‘normal’ for years, but gradually but steadly increased from 2010 and I started velcade with cyclophosphamide and dex in 2012 and later thalidomide replaced cyclophosphamide. The…[Read more]

Hi Jan,

what level did your free light chains reach before they said you needed treatment again? Ive had Amyloidosis as well as myeloma for years now – nearly twenty in fact – had 2 stem cell transplants but last time it came back in 2012 had velcade mixed with various other drugs which got me into remission again  without SCT – but it looks…[Read more]

What lovely news! Congratulations! Very uplifting to read xx

Hi there – I have both myeloma and Amyloidosis – both diagnosed in 1996- I’ve had 2 stem cell transplants – one in 1996 and one in 2001- and then velcade with dexamethosone and cyclophosphamide from April 2012 until last year- in remission again now and leading a perfectly normal drug free life – I’m treated for the myeloma at the Marsden and for…[Read more]

Hi again-that SCT put me into partial stable remission – I have amyloidosis too – and 5 years later was in a lot of pain – and although the free light chains hadn’t gone up, I  had a second SCT in 2001- not sure if it was really necessary but it put me into full remission which lasted for 10 years – then the light chains started to increase…[Read more]

Hi there – when I had my first SCT in 1996 my kappa free light chains were 5500! Way above normal!

Hi there- I was originally diagnosed and treated at my local Hospital  in Bromley but was soon referred to the Marsden in Sutton – and I’ve been treated there for the last 18 years – 2 stem cell transplants there – first gave me 5years remission and second gave me 10 years.  Recently had further treatment with velcade dexamethasone and t…[Read more]

Hi there Nikki – and other newcomers- just to give you hope- I was diagnosed at the age of 45 with both myeloma and Amyloidosis – but that was 18 years ago! In those days the prognosis was not good – median survival of 2 years they said – but I’m still here! Had a stem cell transplant in 1996 – 5 years remission – then another in 2001- with over…[Read more]

Hi Mandy,

so sorry to hear your news – but I must re iterate what others have said – dont give up! And you really cannot always  go with what the statistics tell us – there are always exceptions- myeloma is such a complicated disease and everyone seems to have different stories and reactions.  I can only give you my personal experience – but w…[Read more]

Dex seems to affect different people in different ways – but I think insomnia is common to all! When I started my velcade, cyclophosphamide and dex treatment it was twice a week velcade, so four times a week dex- and i got very little sleep! Also hyperactive on dex days and into a slump in between. It was reduced to once a week, then once a…[Read more]

Hi Keith

i was in the Marsden for both my SCTs and when my mouth was sore they gave me ice pops to suck on which were very soothing!

jane x

Hi ladies – yes I remember how upsetting the bald head was when I had my transplants – it’s the last straw after everything else- although you save a fortune on shampoo! I’ve had two SCTs and both times my head was shaved in hospital once the hair started to fall out.  The first time I had the transplant in the June and hated the baldness and was…[Read more]

I’m on velcade so couldn’t try it anyway but there are a lot of ‘alternative’ remedies out there and some doctors are more open to them than others. My doctor at the Marsden prescribes me vitamin B and folic acid to help with the PN – and a couple of years ago when I had terrible shoulder pain he organised acupuncture for me. On the other hand, he…[Read more]

Hi there – I also had bad attack of shingles a few years ago and was immediately given aciclovir 3times a day – an antiviral medication – and now I am on velcade, I have to take it again every day as velcade makes one susceptible to shingles.

jane x

Hi again to you all and thanks for your comments.  I find there is always something on the horizon that I have to work towards and try to be ok for! As I’ve said my big goal at the moment is my sons wedding in may – in Slovenia! Where they fell in love apparently! But before I have to be fit for the hen weekend in Barcelona! Surrounded by young…[Read more]