Hi, I am 10 weeks since stem cells returned – I was very ill for the first 7 weeks with one thing or another so don’t know if the tiredness was related to SCT or subsequent illnesses which floored me but now on week 10 I have no tiredness at all and am trying hard to rebuild my fitness levels – tho progress is slower than I would like – tried a…[Read more]

Hi Joe, as I originate from Doncaster and am there quite a lot during my time off recuperating I have sent you a private e-mail – which you will find when you go into Your Accouunt.

~Rebecca

Hi Kay,

I have IG lambda and have been told the normal ratio is between 0.26 -1.65 normal kappa 3.3 – 19.4 and lambda 5.7 – 26.3. As I am sure you have read this is a very individual disease and when it impacts on bones or kidneys is also individual but as you are being monitored rest assured it will start before damage is done. I have known some…[Read more]

Hi David – I have been told the normal ratio for kappa/lambda light chains is between 0.26 – 1.65.
Kappa from 3.3 – 19.4 and the lambda from 5.7 – 26.3 (mg/litre of blood). Your ratio 19/18 = 1.05 which is perfectly normal.Congratulations.
Regards,
Rebecca

Hi Joe,
don’t worry about the SCT it tends to not be as bad you imagined and perfectly do-able – as you know everyone will have different reactions but remember its only a short space of time in hospital. I had mine 9 weeks ago (am just 52) the SCt was OK but suffered 2 illnesses when I got home which floored me but thought I would post to tell…[Read more]

Hi Scott,
Just wondering (if it’s not too personal!) how are you kidneys after SCT last I heard from you they went up then were going down – have they now levelled and got a bit better after the procedure? And at any time in your SCT process was there talk of putting you on dialysis to assist the process? I’m waiting and waiting for an SCT date…[Read more]

Hi Richard – the delay in SCT has been because I asked to go to Leeds for a second opinion to see if they would take me (I have very poor kidney function) – slipped through the cracks of 2 hospitals doing bits and then told had to have a hickman line before I went on waiting list – so my little hospital did that straight away then Leeds failed to…[Read more]

Hi Angela, I was told you don’t necessarily get pain and still have a good harvest however, the pain I experienced the day before collection was a throbbing, pulsating pain throughout the chest and back mainly. At harvesting the lady said it’s like labour pains – and it was – and she had been told that a lot of people only get relief by being on…[Read more]

HI Dick – I have been off treatment since July but trying to get SCT organised has taken a while – harvested beginning of October and been waiting for a bed in Leeds for nearly 5 weeks – I am the next bed available so expect to be in next week so will most likely spend all Xmas and potentially New Year in hospital. Will post if able, I have…[Read more]

Hi carol, I was harvested in October and am awaiting a bed for SCT. I had the heart and lung function test after the collection and it seemed to be a “competing the paperwork” exercise before acceptance to SCT. Think it should have been done before the collection but the dates coincided so was done after. I’m 51 and am fit (despite damaged…[Read more]

Hi Tom, totally gutted to hear your news. I started 2nd round of treatment 1st due to kidney probs and had velcade and 40mg dex – had it once a week every week (no breaks) for 8 months – met another ladys doing this at Scunthorpe but on this site a lot seem to have it twice a week for 3 weeks then a weeks break? – think mine was more copable. Made…[Read more]

Thanks for that will now get a wig – good luck fingers crossed for you.

Hi Sarah, So sorry to hear about the failed harvesting and having to lose your hair in the process. I am hoping to be harvested and stored for a rainy day) as my kidneys are not great for an SCT (understatement). I am only on dex/velcase so have had no hair loss and my hopsital couldn;t tell me if I would lose all my hair at harvesting or it jusst…[Read more]

Congratulations, great news to hear – enjoy it to the max. Rebecca

Hi – thanks everyone for all your views – does put things into a better perspective – but would rather have been diagnosed at 70 than 51 regardless of fitness etc. Am currently on 5th cycle of dex/velcade with a view to SCT but now they are in doubt if this can happen as I only have 17% kidneys (but no bone damage) so options getting shorter if…[Read more]

Sorry to hear about your mum but as I'm sure you're aware everyone reacts differently to the disease and i have read posts where someone was diagnosed with aggressive stage 3 myloema and has achieved a 10yr + long remission – the individuality of it all means there is always hope but I know its difficult to remain positive when we literally face…[Read more]

Hi Debs, thanks for that – it was for me (51) and just soemthing an elderly lady on velcade said to me at the clinic – she'd never had SCT due to age but had chemo then 10 yrs in remission then abit of velcade which gave her 2 1/2yrs and now she's just starting another batch of velcade as its raised its head again.I wouldn't mind following her…[Read more]

Hi Martin, I hope you don't mind me asking but would love to hear more of how your kidneys have improved over time and what you did to assist this – I am new to myloema and have 15 – 17% kidney fuction after 4 months which the consultant says is all oermanent and won;t improve further so would like any information/strategy/glimmer of hope that…[Read more]

Hi John.
How did your 100 day test results go? hope you had good news and have been celebrating rather than posting?
Fingers crossed
Rebecca