Hi Jane,
Was surprised to hear you have been allowed velcade for such a length of time – has this been through private insurance? I haven’t heard of anyone on this site on it for so long but if you want to trawl through the Myeloma beacon site – and the bloggers on there – I have read a few who have been on it for a considerable time as part of maintenance tho’ I believe they all had the PN from it. I had it for the max 8 cycles allowed and was told would then have to move on to something different. Velcade as maintenance is growing in the US and no doubt will be trialled, as such, here at some point. Must say I applaud you for coping with it I had the max 8 cycles (taken weekly and no break) and thought I coped really well – denial of treatment effects! – but once I came off it it was as though a veil had been lifted and loads of energy released.
Good luck, Rebecca
Hi Izzie, Sorry to hear about your predicament at the moment. I used to think SCT was a massive step but having had one in December and more or less back to normal now I wouldn’t hesitate to do it again altho’ I had about 6/7 horrible weeks with the process/side effects – but soon forgotten. I believe there are trials now where people have been harvested and will SCT on 1st relapse but it is the norm to go in early in the hope of a deeper, longer remission. I have very low kidney function and my designated hospital did not want to risk them with SCT and I sought a 2nd opinion and went elsewhere – because of the risks to me I asked about postponing til 1st relapse (as I felt so well at the time)but still they thought it best to SCT me then. I am not being told/having my results discussed until 100 days and I think my light chains have not moved – tho’ we will see as I could still be a “work in progress” – but I am glad I tried SCT and do not have any “what ifs” to torture my mind. You have come so far with the harvest that SCT is just the last hurdle. If you postpone it til relapse remember you will still feel awful pre SCT following the chemo cycles you’ll inevitably have. From a personal point of view one of the worst things of the process was losing my hair at harvesting and it takes so long to grow back to a normal length that I’m glad I had the SCT now so it can grow back and I can keep it (hopefully!) – would hate to have it grow back (ever soooo slowly) then lose it again in SCT process. If you don’t have it now will it hang over you? – knowing that you’ll have it in the future and will you worry that your remission may be shorter because you delayed SCT? Regardless of my final result I am glad I did it as it doesn’t enter my thoughts any more – I find myeloma is equally a mental torture instrument so anything to minimise this is a big plus in my eyes. Remember, you will turn the corner and not feel as tired etc it will just take time. I was harvested after velcade/dex regime so I had the primer cyclo-something for harvesting and I think that dose makes you quite neutroprenic (as well as bald) which you will be recovering from still.
I read your previous posts and note you are being treated, in part, at Doncaster – I originate from there and am there quite a lot (whilst on sick leave) if you ever want to hook up for a chat just sent me a private message.
Good luck with whatever you decide, Rebecca
Carol, This is just brilliant news, congratulations and long may it continue. My 100 days is the end of the month and my Dr doesn’t do an FLC test until 100 days – just to add to the tension!
Rebecca
I think it is very difficult to comment as everyone is so different in MM and how they react to treatment. I had velcade/dex and the 1st cycle reduced my light chains 1120 at starting) by about 80% the biggest hit and then it was very gradual and eventually got 94% reduction from it. Velcade is known to be very good for light chains and my consultant said it worked on me as expected and that the biggest drop is generally at the beginning. It is considered an effective drug for most and believe if you do not achieve a 90% reduction in 6 cycles the NHS gets there money back.
Regards Rebecca
I was admitted mid November to a general ward – they couldn’t understand what had happened – they thought I had AIDS at one point! then 1 night as my kidneys were decreasing I was told I was going to the Renal centre at another hospital but then the haematologist got involved and I was duly diagnosed. I was in hospital for about 2 weeks on the oncology ward – I was severely ill and severely anaemic at diagnosis but I guess as they saw my kidneys improve a little and stabilise I went home returning for my treatment on a weekly basis. At this point we were shell shocked and knew very little otherwise I would have been very alarmed going home with such a low kidney function but I didn’t know any better and I guess as they weren’t treating my kidneys in hospital that I may as well be at home? Can’t say how I was treated makes sense when comparing to literature but I think it was the right decision. I believe liquid will be restricted to put less strain on the kidneys and make sure he/she doesn’t start swelling etc due to low kidney function – I did an input/output chart each day — even after discharge – I was pretty much balanced.
Rebecca
Hi, I was initially admitted with 5% kidney function and light chain myloema put on fluids and dex/velcade which raised it to 12% quickly then after 2/3 months I was at the dizzy heights of 16 function and told not to expect anymore improvement. Throughout this dialysis was never mentioned and I was subsequently told that as I could pee ok the renal dept. were on a wait and watch – I was told that if my kidneys started shutting down i.e. could not produce pee then dialysis would have been instigated but as I could drink a lot and pee a lot it wasn’t necessary. I believe in the Uk dialysis is normally instigated at 18 gfr but then MM and everything about it is not normal. I am currently at 28 gfr so I did improve over time ( 1yr)which has surprised them. I have recently had an SCT at Leeds and queried with them at my consult about not being put on dialysis initially due to such low gfr and they said my hospital had, in hindsight, done the best thing as they did improve. I am not sure but I think if you have a dialysis for any length of time it may make your kidneys less susceptible to improving. I suspect the kidney drop is only temporary until your relative feels better – mine dropped after SCT when I had an infection and once it was over it went back to normal – well my normal anyway. From what I’ve gleaned about dialysis its something I want to avoid at all costs. I would also add that with a grf of 16 I was still managing to play tennis/exercise and lead a normal life ( again as normal as it gets whilst on chemo!) but got tired at night and BP rose at night also – this could have equally been the chemo as the kidneys. I was given velcade as first line treatment as it is kidney friendly and at the time they didn’t think I’d get to SCT with my kidneys.
Regards,
Rebecca
Hi Ann, Congratulations on your results and going back to work – normal life resumes hopefully for you! Hope you have fantastically well deserved long remission and manage to shut myeloma away in a box.
I should be going back to work in March after SCT but am hoping to spin it out so I can enjoy a bit of nice weather – think I deserve it (I obviously do not have a very satisfying job!)
Rebecca
Hi Jane,
Thanks for posting it’s really great to hear your story and although I am sure your are an exception to the rule who’s to say anyone coming into this myloema world is not also a similar exception? Without hope life seems a little bleak. I have just had SCT and on a bit of a downer as all last year the focus/goal was to get to SCT and I never thought ahead of that but now it’s a bit of a “what happens next and has it worked? – will it have been worth it?” So all success stories -especially ones like yours – give me a huge boost in spirit and hope.
Thank you
Rebecca
Hi, even if you are lucky enough to get a complete response from your current treatment i.e. ALL evidence of m gone they will still, generally, want him to have an SCT as this is deemed to help give the best possible chance of a longer remission than without it and especially because he is so young. SCT is nothing to fear (had mine 10 weeks ago) it is just another treatment option.
Good luck
Rebecca
Sorry, don’t know much about this but have read there is a plexifor injection that can be used instead of the growth hormones – think it is very expensive for hospitals to use and therefore limited for those who have had a lot of chemo that is hindering the process. I would have thought they would want you in a stable condition and not rising pre harvest and SCT? My understanding of SCT is that it has to have stabilised to undergo the process – that’s what I was told. I would ring the helpline on Monday for more information. I’m sure some on this forum have had plexifor so you may get some more info.
Stay strong
Rebecca
Mmmm…sounds like you’re certainly doing a lot so soon – perhaps that’s why you’re tired and it should gradually improve. I was told not to overdo it to start with and be gentle but as it happens events took over and I wasn’t well enough to push myself.
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 knock about tennis the other day but was very slow at running for the ball tho I can brisk walk for a few miles now. I have only just stopped with the bouts of nausea etc and I do think this is exacerbated by the anti- viral etc pills ( I was told to stop some of the pills for a few days when I has severe S&D) From week 7 to week 10 I have just gone from strength to strength and in 3 weeks it is hard to imagine how weak and tired I was – I now feel perfectly normal and just need 6 – 7hrs sleep a night. Be patient I’m sure it won’t be long for you – I think age and fitness plays a big part in recovery and now I can exercise I honestly feel as though I am back to normal pre SCT (bar running for a ball – but am working on it!).
Rebecca
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
