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 wait til 1000 before treatment has started but I am also sure there are others who have started earlier and later than this. My lambda was only at 1120 and I was at 5% kidney function when diagnosed but no bone damage – everyone is different. The important thing is you are being monitored. No M spike detected is because it is non-secretery.
Do make sure you ask your consultant everything you want to know – in the early days I took in a concealed tape recorder and a list of questions to ask. When I listened to it later I realised I had retained very little from the meeting – so this was a godsend to me. I also didn’t want to be writing everything down as it was hard enough asking all the questions. You will also find this helpline very good for answering everything or pointing you in the right direction, they are very friendly.
Good luck and stay strong,
Rebecca
Rebecc
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 you 9 weeks on no tiredness whatsoever up at 7am doing my daughters paper round and going to bed at 11ish fitness levels all but restored – power walking a few miles a day etc and am going back to playing tennis in a couple of weeks. I don’t know if it has worked yet ( I have poor cytogenics) but for a few weeks “out of the norm” regardless it was worth the gamble and I won’t be plagued with “what ifs”. I read a post today and the guy said if you act ill you will feel ill and I believe this to be true you need a positive mental attitude and huge desire to get back to normal ASAP – I’m sure most of us has this tho’ as it impacts on the whole family when you don’t act well and you can almost feel the relief when you take the steps to get back to normality – that’s why I’m back helping on the paper round etc so we all all get back to normal – or as normal as it will ever be again.
Good luck and go in fighting, Rebecca
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 and considering changing venues o one where they do not have dialysis on the same site and am not sure how important that is really for SCT as after harvesting kidney function increased to 27 – 28 e-gfr.
Regards
Rebecca
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 tell me of huge waiting list! I was told in August at my referral I needed to be done ASAP! Then I heard they have diverted some to other transplant hospitals because they had been waiting so long. Saw my own consultant when having my line flushed and he phoned them and am now the next available bed as my consultant was so concerned that I have not had treatment and no-one is testing me presumably because they see no point as they are now waiting for the SCT? My consultant did ask if I wanted to get a date from another hospital but when you are told your next it seems I may make matters worse jumping ship. Been the most testing of time of all now and am hoping its the next few days.Leeds has a very large unit doing many transplants and the most critical get the bed.
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 all fours to relieve the pressure – again like labour – but it was too late for me to try this out as I had the collection that day. Might be worth trying if it does get very painful. I felt the pain was excruciating but, like labour pains, it’s a pain quickly forgotten! Good luck
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 considerable kidney damage so have been told to expect a rough ride but I am fit so that may counteract that – fingers crossed. Good luck and let’s hope for a fabulous New Year drug free!
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 kidneys). I expected the tests to be more than they were – lungs – blowing in and out at various speeds and intervals and the heart laid down having like an ultrasound check – think just ensuring the blood is flowing round as well as it should be. I expected to be on a treadmill with heart monitors on etc to test fitness! but it was all a bit of a non event. You will have to have the tests done prior to SCT but obviously they feel you are fit enough for it to not hinder the collection. Good luck, Rebecca
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 me tired but not debilitatingly so – played in the tennis league, went to the gym, brisk walked 4 miles most days (this may sound excessive but exercise to me was like an anti depressant (newly diagnosed then) and the more I exercised the better I felt all round – determined not to alter my life etc).Had to go to bed at 9 – 10pm and the moment I closed my eyes I was out for the night. Had some signs of PN in last 2 cycles which went a while after treatment. Finished this July and waiting to SCT at Leeds when a beds available (been waiting 5 weeks now!) but not had any rises in light chains since end of treatment tho’ only got a 95% drop. Met a woman who had 2 yrs remission on this and was trying it for a second time. If it suits you I think it’s quite a “kind” treatment with just fatigue and PN to watch out for – tho’ think you are so mentally strong you could probably push through the fatigue. Good luck, Rebecca
Hi,
Harvesting done – very easy – no sickness at all so hope that's a good sign for SCT. Know you had it bad. I've had no after effects of it all so am busy xmas shopping but whenever you're up for a coffee we could meet at Xscape.
Rebecca
Hi,
Harvest was a breeze – how are you doing now don't see many postings from you, everything still on the up?
Rebecca
Hi Tom, thought I was at least 1 injection short and on 1st day count was 0 so wasted trip but the 2nd day – 5 injections same as you – got 4.4 million so all OK!
Hi Eve,in hospital I started hiccuping during treatment and after 2 hrs a Dr came and gave me CHLORPROMAZINE 25mg tablets (says on packet to take 1 tablet 3 times a day when required – can make you sleepy/no alcohol). I only had 1 tablet and it did the trick. This is what the standard treatment for hiccups is at my hospital.
Hi Scott – going to Jimmys in Leeds for the harvest but treated at Scunthorpe first. So how many days did you have the jabs? more than 4 days pre harvesting? How are your kidneys this week any noticeable improvement
yet? Did you find the pre harvest chemo affected them? worry…worry…worry…
Rebecca
