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 light chains went right down for a while but are slowly increasing now – I go to Marsden every 8 weeks and they are have gone from 11 to 32 to 67 in the last 3 visits. Last time they started talking about treatment when they reached 500 although they’d got to 850 by the time I started the velcade. I think they are more worried about the amyloidosis as if it gets into the heart or other organs it’s very serious. All my other results are ok and I feel physically fine – but obviously something’s going on inside!
im sorry that you are starting treatment again- it seems so harsh when you feel ok! These free light chains have a mind of their own!
i wish you all the best with the treatment- good luck.
jane x
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 like the dreaded light chains are rising again already after only a year of remission – am monitored by both Marsden and royal free but both say it’s a question of ‘watch and wait’.
xx
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 the amyloid at the NAC at Royal Free Hospial – both of which have been brilliant – no one expected me to last long in 1996 – and that’s 19 years ago! I hope that gives you some hope and confidence!
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 slowly but surely – when they reached 850 in April 2012 I started on velcade dex and cyclophosphamide – then after a few months thalidomide instead of cyclophosphamide – which brought the light chains right down – I stopped treatment in August 2014- and am in remission at the moment- fingers crossed as I have check up next week! But have had the disease nearly 20 years – and going strong at the moment! Good luck with it all xx
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 thalidomide and in remission again. As far as I’m concerned – they are brilliant!
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 10 years remission when I ALMOST forgot I was ill! Free light chains started rising again and I started velcade in 2012 – and have been having various combinations until last month – fingers crossed now that bone marrow biopsy last week is ok and PET scan etc tomorrow ok – and then I may be drug free again – obviously there have been bad times over the years but I feel very lucky that I’m here and able to lead a normal life- I still go to the gym 5 times a week if I can, and try to fit in as much as possible in the way of holidays etc! When I was diagnosed I found my blood group is B positive – so I feel that’s a sign and should be my mantra! There always seems to be something on the horizon that I need to be ok for – in the early days it was my children’s GCSEs then a levels then Uni -and now it’s their weddings! This myeloma organisation didn’t exist when I was diagnosed – but over the years I have found it very useful, reading other peoples stories, and also bring able to phone for advice.
Good luck to all of you
jane
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 when I was finally diagnosed in 1996 after a long time when no one seemed to be able to find what was wrong, I was referred to the Marsden and had an SCT straight away- but the ‘median survival’ was 2 years. That was 18 years ago! Obviously it hasn’t been a smooth ride and with both SCTs there were apparently times when it didnt look as if I’d make it – but I’m here- and still fighting! It’s always a bit daunting when people say a positive attitude helps, when a lot of the time you feel far from positive, but I think I was very angry too and determined not to let it get me! It was on,y when I was diagnosed and needed a blood transfusion that I found out what my blood group is – B positive- so that’s my mantra! Be positive- and dont let it get the better if you!
jane xxxx
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 fortnight eventually with dex 2days a fortnight – even on that low dose, I find I’m full of energy for 2/3 days then very low as it wears off. Have to adjust life to fit in with dex! I keep a kettle in my bedroom so I can make camomile tea at 3a.m. if necessary! Can be expensive too- I spend a lot of time online during the sleepless hours- shopping is very therapeutic! In the early days of dex I bought an exercise bike online in the middle of the night – well worth it as I often feel unable to drive as the dex seems to affect my vision, so instead of going to the gym, I get on my bike! But as others have said, the dex dose can easily be adjusted and I think lower doses are still effective.
jane
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 also convinced the hair would never come back as it seemed so saw to grow and I put the wig on every day, hating anyone to see me without it. I was a teacher at the time and when I went back for the new term after Christmas I stopped wearing the wig – just in case any observant year 9 boys spotted it! Very short hair then but enough to be seen! The second time I had a transplant I was far more relaxed , knowing the hair would eventually come back. I was happy to wear a baseball cap or scarf and even go ‘au naturel’ at home . Both times I had wigs which were similar to my own hair, blonde and shoulder length, but I think it would be better to have a short wig so it’s not such a contrast when you stop wearing it- if there’s a next time, that’s what I’d do. Both times the hair came back darker, coarser and curly at first, but once it settled down it was the same as ever. I kept going to the hairdresser and asking for highlights as it looked so dark but she kept telling me there wasn’t enough hair to pull through a cap or put the foil on! harassed her every week until I had enough!
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 advises me against the gym because of risk of infection – so I have to ignore him on that point as its one of the best things for me!
I’ve also discovered that both echinacea and high doses of vitamin c are not advisable for myeloma and amyloidosis.
jane
