Hi David, whilst I’ve been on the forum I have read of people always feeling tired long after 11 months after SCT – sometimes years – but I do wonder if we attribute everything to SCt when you may have felt tired anyway from often 6 months of enduring chemo and the effect that has on the body/mind. Lots of cancer literature speak of “fatigue” from chemo which can last years and they are not meaning only those who have had the high dose SCT. I have pushed myself as hard as I can through recovery,the more exercise I have done the better and less fatigued I became until I am back to normal levels. I also think exercising and feeling normal lifted me up an awful lot mentally. But I am relatively young and not hampered by bone pain. I spoke to one gentleman pre SCT and he felt if you only got 18 months or less from the SCt it wasn’t worth going through such a procedure and recovery – another opinion – as he felt it took a year to properly recover from it. SCT is emotionally draining and I found this to be the hardest part of all because afterwards, without any energy, it is easy to go downwards mentally and become depressed. They talk to you about this in hospital as it is recognised that after SCT depression can easily set in. For a year I struggled treatment/kidney probs to get to SCT as tho’ everything would go away after it – I never thought of anything but a total success but unfortunately you just go onto a different twist of the rollercoaster – having bloods done every 2 months and “watching and waiting” which I think is equally hard as you are not being proactive with treatment – just waiting. Whilst maintenance is only a “randomised” process for those trials (I was excluded from a trial as they didn’t think my kidneys would recover sufficiently for an SCT) it is worth remembering that as your numbers rise you will go through the treatments which will eventually put you on “maintenance” drugs until they stop working. It is a lot to think about – for me it wasn’t as I am too young – would I ask one of my own parents to go through with it with all the new drugs? probably not unless they had poor cytogenics (which I have also and may explain my disappointing results). Take care and find peace with whatever you decide.
Rebecca
Hi, I had my SCT at Xmas and was told SCT deepens the response and therefore gives a longer remission – but no figures quoted – my consultant gave me a strange spiel of “I am sat here like a bookmaker…some people we think will do well and don’t and some people we think will do badly do well!” – we came out with the feeling that like with all things myeloma it’s always a lottery as to how each of us respond and we must learn to be gamblers. It deepens the response merely by being able to kill more MM cells and reduce the minimal residual disease left (if any) after your treatment. It does this by the sheer high dose and toxicity of the melphalan to the extent that it destroys your immune system hence why we have stem cells harvested and put back in. I have kidney impairment and was told my risk of dying from it actually increased to 1 in 20 (in case infections wiped the kidneys out). My initial treatment was velcade/dex which is not known for long remissions (unlike CDT) so SCt was the right choice for me despite the risks – and I am 52. There are some studies now comparing if you get complete remission from intial treatment to hold off SCT until 1st relapse. Unfortunately everyone is different and it will be difficult to get accurate data on how mush longer remission you personally would get from SCT as we are all so different. I know people who have got equally long remission after CDT alone than those who had SCT. The aim of my SCt was to get try and eradicate the minimal residual disease which was .3% before SCT and is still .3% after SCT. My light chains were at 50ish pre SCT and now down to 7 (but still an active ratio unfortunately) but I believe this could have been achieved by adding another agent to my treatment like cyclosophomide but this was deemed unnecessary as I was proceeding to SCT. I am glad I did the SCt as anything that could give you a longer drug free period is worth exploring – 18 months extra drug free sounds good to me. Also, I would always be plagued by “what if” had I not had it done – would my relapse have been longer had I had it done? would I be one of the lucky ones who got 7 yrs? etc. At 71yrs I guess this may be your last shot at SCT so waiting to do it further down the line may not be an option. I believe we have limited treatment options with MM and to me SCT counts as one so, for me, I did not want to miss out on an option and had to fight to get it done with my kidney function. I am totally back to normal now, no fatigue, fitness levels restored. For me it was worth the time/risks although my results are disappointing – I am satisfied that I tried all I could and that gives me a lot of peace of mind. Good luck with your decision and do make sure you know exactly what type of response you have got after CDT is complete eg plasma cells left in bone marrow, paraprotein, light chains – if they are all not classed as stringent complete remission then Sct may get you to that point? Good luck,
Rebecca
Hi Sharon, just wanted to say hi and don’t worry unduly about the SCT, I had an SCT over Xmas with a kidney function at the time of 28% egfr. SCt was not pleasant but doable, was worried about infections re kidneys but all went ok – a few ups and downs – and am now back to normal in all aspects with a slightly better kidney function after it (around 32%). I’d read a lot about the SCt, everyones experiences etc and to be honest it’s a bit different for each and everyone of us so read up but recognise it might not be like that for you. I was so terrified of the “runs” and dirty washing I bought about 150 pairs of knickers from Primark with a view to throwing them all away – needless to say I have nearly them all stashed away at home still – and as I bought the cheapest and a slightly too small size don’t want to use them! I didn’t use ice in the mouth as everyone recommends so as not to get mouth problems and I didn’t get any at all – so when you read that people sucked ice for 20 minutes (and that takes some doing, I lasted 1 minute!)and they didn’t get mouth problems well neither did I? The unpleasantness is relatively for a short period of time so you will come out of the other end and say as we all do “it’s doable” because it is and soon forgotten when you start to recover. Good luck
Rebecca
Hi Helen, Just wanted to say love your latest 2 fabbie photo’s, is 60 the new 30? Is dex the hidden beauty treatment that nicely plumps up and smooths out skin? if so, let’s keep it to ourselves eh?
Rebecca
I’m at a very small hospital but it was done as standard so am surprised hospitals differ so much. Are you having the SCT at another hospital? as my understanding is it is done again on the 100 day BMB. I have not asked for my results of this (the SCt did not remove my MRD which remains at 0.3%) as I am not eligible for maintenance so it will only be useful to me on 1st relapse to see the route I go. I would clarify with him that it will be done after SCT. In reality nothing much will be gained knowng now except peace of mind – and I doubt if even good news really give us peace of mind.
Rebecca
Well my understanding is the FISH analysis is done at the initial BMB so the results are there and you could ask for a print or ask your consultant to explain the results – and he would. As you know my consultant wasn’t particularly truthful about it but to be fair not many people seem to ask/know their cytogenics in the UK. Did your consultant evade a very specific question about it? MM is such a huge mind game and you need to gauge how important it is for you to know and what you could do, that would be helpful, with the information – you have had fantastic results and perhaps should take this as a positive that your MM is not aggressive. Remember cytogenics of a BMB sample is a snapshot of that particular fluid only and not necessarily representative of the whole body and cytogenics do change over time – perhaps that is why Drs don’t automatically tell us the results. Another reason why focus is placed elsewhere, I guess, is that we don’t receive individualised treatment based on cytogenics (yet) so how useful to us is the actual information? As you are on a trial you will be randomised for maintenance and you will then have to decide if you want to take maintenance – this would be the time to definitely know your cytogenic status and perhaps that is time enough. It is annoying that Drs don’t go out of their way to tell us if it is “normal” as a bit of good news, but they don’t, so by not telling us you cannot assume you it isn’t normal. Your treatment has worked incredibly well and perhaps that’s your greatest indicator. In fact, I would say don’t look for a stick to beat yourself with, listen to your Dr.
Rebecca
Hi Stanley, That’s great news – congratulations – with these results all bodes well for SCT. You must be well chuffed. Enjoy.
Rebecca
Congratulations, knowing you’ve a date makes everything go so much quicker. I think it is wise to wait a bit longer and go home with less chance of going back in. I have never spoken about it but did a very stupid thing when I left hospital. The day after going home I had a temperature and was hell bent on not going back in – I hated absolutely everything about my time in Leeds – especially the extremely cold room, how catering used to forget my food and then give me a sandwich etc – I was adamant I wouldn’t go back, cried etc and my hubby – not aware, as I, about the importance of temperature pacified and agreed. Had the temperature for nearly 2 days but then became very ill, bad chest etc and had to go to my local hospital for antibiotics etc.etc. Was incredibly ill for a while and when I went back to Leeds for my only check before I insisted on going back to my usual hospital they were staggered at what I’d done, told me I could have died, and had I gone in straightaway the ensuing illness would have been stopped in its tracks. I made myself very ill and put my family through a very worrying time and were I ever, ever, to do it again I would go straight away to the hospital if my temperature rose. I was very lucky to have got away with it but it hampered my recovery for quite a while. So do listen to everything the hospital tells you on discharge – I am shame faced that I didn’t but in fairness did, at the time, feel I left hospital with post traumatic stress! So enjoy the last weekend of not having to be responsible for your health and leaving it in the hands of experts as it can feel a little daunting when you’re home without the safety net around you. You sound in good spirits Izzie and this can only get better when you get home. Well done you, give yourself a pat on the back because you certainly deserve it. It does make you feel stronger knowing what you’ve managed to get through “relatively” unscathed.
Rebecca
Hi there Clover, sounds like you’re dad is at the “harvesting” stage to collect his stem cells prior to the SCT. The chemo given for this stage is generally cyclosphomide and this chemo drug is known for making you sick/nauseous and a common side effect is loss of appetite – so don’t worry. The hospital should have given him some anti sickness pills to use at home when necessary. I wasn’t in hospital for this stage either which I believe is common. The next stage should be some “growth” injections to over produce stem cells ready for your collection next Tuesday. Be warned when the body starts over producing stem cells your dad may experience bone pain, which is normal and often taken as a sign that it is working. Paracetomol generally does the trick. The pain came in waves for me and went instantly once harvested. This is the beginning and easiest part of the whole SCT process so your dad will need you to be strong and extremely positive throughout. It is as hard for those “around it” as much as it is for those going through it but it is so important those “around it” exude positivity because it’s a difficult time/recovery process with lots of ups and downs. Best of luck,
Rebecca
Thanks Izzie, but trust me it’s a constant fight to be positive and nnot get drawn into a black hole when you have a teenage daughter to think of. My positivity is up when I feel I live my old normal life which is why I am a little obsessed with pushing myself on the exercise front as that was my normality. When I posted how I’d got m y fitness back and playing lots of tennis – all very positive – I omitted to post about when I collapsed twice in the early post SCT days when I was trying to walk too much, do too much too soon to get my normality back. I was hell bent on getting it back because I could visibly feel and see the relief on mu familys faces when I started doing my daughters paper round (used it as a goal for walking/measured progress). Yes I am playing in the tennis league and back to normal now but it was my husband who pushed me to go for a “knock” when I could barely move to hit it. My coach saw and was so concerned he suggested I play with a soft sponge ball (for the under 5s) But I didn’t. I cried thinking I’d never play again but hubby took me every day for 15 minutes for a little knock then it soon got easier – he needed to me to do it, to reassure himself we could have normality. Recovery affects all the family – they anxiously wait to see signs of “normal” again as much, if not more, as we anxiously wait to see it. We are both of a “no pain no gain” attitude to fitness but would not recommend this approach to others after SCT – at one stage hubby thought he’d killed me! However, I think this dogged approach by me, and a lot of him, paid dividends because I went from strength to strength. Hope your hobbies are knitting etc as it eill be much easier on you! There is a lot of positivity on this site and achievements as that’s want we all need to hear – I never posted once during my SCT as I felt so traumatised and horrible with it, in fact I came home feeling convinced I had pose traumatic stress! I never think of it now, barely remember it as I move on quickly when I feel better but my husband talks of it a lot – well the when I was home bit of it. Stay focussed on home and your recovery and like childbirth it’ll be very forgettable.
Rebecca
Hi Izzie, sounds like you’re doing really well (in myelomaworld wellness scale of course!). I think now you’re at that tricky “tummy” stage once that subsides – mine took a few days but got easier- you’ll be well on the upside of it – that’s how it was for me. From going in to being on the upside say 14 – 15 days so you’re nearly there, finishing line just round the final bend. Well done you must be feeling pretty relieved, but pretty grotty at the same time. Best wishes
Rebecca
Thanks for that Mike – is the BP/oedema considered to be an effect of poor kidneys as I have read how poor kidneys can affect heart, BP etc but even in kidney failure my BP was totally normal but don’t know how long you have to have bad kidneys before effects start to show? that’s why I exercise a lot along with the fact that it keeps me sane. I think I worry more about kidneys than MM bit it’s hard to tell! a tough call. Thanx
Rebecca
Hi Mike, long may your remission continue and welcome. Now you’re here can I pick your brains a bit please? I have lambda LC with kidney failure (at 51yrs)- took a year to get to SCT with kidneys at 26ish but now they’re 32. They are heavily correlated with light chains numbers – 120 LC kidneys 14% 60 LC kidneys 26ish hit the dizzy heights of 32 after SCT with LC of 7. You mention your kidneys are 30ish can I ask please have they declined over the 7yr remission or remained the same and do you follow a kidney friendly diet or do anything different to try and preserve them? I ask because I have never been seen by a renal team only my haematologist who says there is no need as it is a multi disciplinary team, he tells me I do not need to follow/do anything differently except drink my 3 ltrs (the wonder drug of this day and age!) but when I google (which is often) it seems to point to everyone with low kidney function to eat differently etc to preserve them? I exercise an awful lot also ( which I think stops me being on anti depressants) but am told by the heamatolgist this is fine. As you are an hold hand at this (and I hope I can be an old hand at this in the future!) what are your experiences please re kidney health?
Rebecca
Hi Keith – talking about getting hung up on numbers -when you posted yours the other day ( which are absolutely fabulous by the way – especially white blood count) I had my prints so went to look at mine to compare – mine were 4 months post SCT neuts -just under 2, wbc at minimum, platelets at minimum. I know my bloods are always poor, presuming due to severe kidney damage, but comparing sent me off on a downer for a while! am I very prone to infection still? etc (which I am). I had to think hard to come out of it and that is I feel really fabulous, look a picture of health, never have a hair out of place! – tho I have rubbish bloods. Last week I played 2hrs doubles tennis in the morning and then in the evening played 2 doubles matches in a league which lasted 3 1/2 hrs! felt very tired next day but so did everyone else who played. My fitness levels are really good now and that’s what I/we need to judge ourselves on more – just how well we feel and the quality of life we have – the rest is just detail. Mind games – determined to win it – Take care
Rebecca
Hi, if you ask for your blood test results they will print them off you – but it is hard to gauge how much info you should have as trust me, if you have it in hard copy, you’ll try to analyse everything. In my 1st year of treatment I only asked for 3 no.s but when I had my SCT (at xmas) I started asking for the prints and quite honestly I think just knowing the main thing – heamaglobin, neutrophils, kidneys is all you need to know. At first diagnosis I chose not to know/ask too much but slowly started looking, followed by obessively looking (a habit I am still struggling to break). I thought after my SCt it would be different but my results were mixed and am now on a 2 monthly test/consult. Myeloma is an endless mind game, if you let it be, when on treatment you are focussing on remission when told in remission you are then wondering how long – this bits new to me and I hope I can manage to put it at the back of my mind more as time goes on – guess it will depend on my next results!The main thing is to live your life as you wish to live it and to remain very positive – as it’s miserable being miserable! Act as if what you do makes a difference. It does.
Rebecca
