Hi Deborah, I had mine at xmas (just 52) and can assure you I am totally back to normal in every way including fitness now. As a woman I think you will have covered all bases – unlike David my room was freezing (they kept telling me it was because it was sucking all the germs out? but I wasn’t convinced – one thing I would have loved to have had was a little snuggly fleece to wrap myself in – for both warmth and comfort. I researched everyones advice and took little pots of jelly, rice pudding, custard in the event of sore mouth or not being able to eat and brought them all home as didn’t need them – in hindsight a stash of chocolate would have been much better. Hearing the horror stories of the dreaded runs I decided to buy lots of cheap knickers to throw away ( planned to be in 18 days and took way over 100+ (must be a womans thing and not wanting men to do dirty washing!) hasten to say that bit wasn’t too bad and probably needed just 3 packs to throw away! Now have a load of primark knickers that were a tad too small anyway and very cheap that I can’t off load to anyone!. I was never tired or sleepy but very bored with TV and couldn’t settle to books but did enjoy books on CD – listened to the whole of the Twilight sage which lifted me and wasn’t too taxing – you may prefer something a little more intellectual but I wanted something easy to follow with a feel good factor. Think I would have also liked knitting or something crafty to do as it’s a long, tedious time if it doesn’t make you sleepy. I also took in a kind of count-down board to mark off each day. They tell you to expect to be in 3 weeks but later told me this was so people didn’t get disappointed and they said most people go home after 2 1/2 weeks. I decided to choose 18 as my count down calendar (thought 16 may be pushing it and I was actually in 18). I can’t tell you how good it was to cross a day off and know there was only X left, when I had a rubbish day it was great to tick the day off and know I was 1 day closer to home. Measuring time in days felt good, achievable goals, guess I treated it as a jail sentence hoping for a shorter stay for good behaviour – but seriously it was a great psychological boost to visibly tick off days and count down to home. Nothing seems unbearable broken down into bite sized chunks. Good luck with it all and trust me it’s nowhere near as bad as you think it will be. Wouldn’t hesitate to do it again if necessary.
Rebecca
Hi David, My understanding is that by going onto a trial you have access to newer and potentially more effective drugs (not readily available on the NHS until results are proven by trials – even tho they will have been trialled in other countries/used by them) and by going on a trial you are randomised for maintenance therapy following SCT – something that you cannot get in the UK unless you are on a trial (for now anyway). When you are on a trial you are closely monitored – which is a good thing also. I was ineligible for trials due to extent of kidney damage at diagnosis and felt robbed of opportunity/maintenance option. Back to back SCT could mean 2 sct’s within 6 months using your own stem cells or could mean 1 SCT using your own cells followed by a mini allo (i.e. using a donors) which I guess has more risk but more chance of it being curative. I mention the latter because the under 50s seem to be given this option. Stem cells can still be collected from you after an SCT – many have gone on to a 2nd SCT via a new collection. Sometimes, it is harder to collect after many more treatments but they have drugs to help/boost the process in these scenarios. Are they trying to get you to do a trial involving a double transplant because your levels have risen so quickly and they want to treat it more aggressively? if this is the reasoning I’d think carefully about not going down the trial route and accessing newer treatment options. You need to be well informed before making such a decision and I suggest you phone the helpline and talk to Ellen – you can ask her anything and she will explain everything you want to know with no time limits imposed – and no question is too trivial to ask. Consults are often difficult as you have limited time and tend to come out thinking why didn’t I ask that. Best wishes
Rebecca
Hi Tom, seems like yesterday when I was following your journey. Great news, hope you are celebrating.
Rebecca
Hi Treakle, I hope you have gleaned from the above posts that life does go on, as normally as possible, once the initial treatment has sunk in and when you manage to get your head round it all – it is, however, a slow process to get to that stage. For me, (diagnosed at 51) the first few months were spent grieving for the loss of my old life, dreams and my future but you do become settled, take it in your stride, and start planning ahead. You will note on here that couples tend to go to all appointments, treatments etc and it seems all consuming and you take on their journey as well. For me, I went to all appointments, treatment alone, when I had my hickman line in I drove there in the morning and drove back later – I do have a supportive husband but he had work and why share the misery of it all? I felt. I tried to make it just part of a routine and shield my family as best I could – your dad may choose to do the same. I much preferred going to consults on my own, I bought a discrete Dictaphone off ebay so I could play it back later and not miss things (which I did a lot of) and my husband could listen if he wanted but I just filled him in. If I’d had him, or close family with me, I would not have concentrated on the consult as much, asked the “hard” questions which I wanted to know but not necessarily my family did. Guess I’m saying doing things on your own felt easier, for me, as I just focussed 100% on me without worrying about what the other person was thinking/feeling. So don’t insist that his illness is your illness because it isn’t, it’s your dads and you must respect how he chooses to deal with it, whichever way he turns. He will need your support but remember you are his daughter and dads try and protect daughters – just give him time and allow him to run his own race. My greatest desire from diagnosis was, and still is, to live a normal life and I have achieved this. I am 6 months post SCT – which I am sure your dad will go through – (and you will need to move in with him for a couple of weeks on discharge of SCT) and living life normally. My advice would be to don’t overly crowd your dad, let him get his head round it all, but do spend more time together dong normal things, nothing special, just time taking his mind off things for a while. Your mind, for a long time, is inevitably swamped by it all so diversions are nice. You will both get through this but remember this is a marathon not a sprint.
Best wishes, Rebecca
Hi Craig, sounds like you are finally getting sorted and you are young enough to sail through SCT – had mine at XMas and totally back to normal now, for now!, you will get there too and it will move more to the back of your mind and I guess you may even have the allo option to mull over at your age. It’s quite a bummer getting it younger than the average age of 70 (they quote). Much harder to get your head round it, but with time we all do. Good luck with it all Craig and please use this forum if you have any questions
Best wishes, Rebecca
Hi Jane, I remember your original postings, you worked in a hospice?, I think you were diagnosed after me but was racing ahead. I had my SCT at Xmas and came through, thankfully, unscathed. Wish I could swap hair as I hate the start of my new curls! I am so sorry to hear how tough it’s been but am glad you are still smiling and getting on with life. I know what you mean about enjoying every minute – before all this happened I was one of the ones who would say “I’d rather die than have to live like…” but now I hold life so precious I’ll cling to it/adapt to it whatever may happen. When things like this strike there are only two ways to go – down or up – I’m glad you’ve chosen the latter as I know how hard it is to get there but as someone said “it’s miserable being miserable” and a waste of precious time. I hope you continue to go from strength to strength Jane and live life large. So nice to hear from you again.
Best wishes, Rebecca
Hi, this is a real blow when you have mentally prepared the route to take. My understanding, from my consultant only, is you must be in a stable position before you SCT ie. not rising numbers. Numbers vary from person to person as it tends the be the best numbers they can get you in but the one thing that doesn’t vary is the stability factor. I had quite a wait from harvest to SCT and this was the main worry we all had and was about to go on treatment to ensure stability when I was called in. It seemed irrelevant that my harvest had been taken in a stable period. SCT is a big step and you need to go into it at the best possible time to ensure you get the best possible outcome – I would phone the helpline 1st thing on Monday to get their understanding of the situation to see if that matches with whatever they decide to do – could be postponed and a bit more treatment to get your numbers stable again? Whatever, make sure you know what should happen for the best result possible so that you can insist it happens. Remember this is your life, not theirs, don’t put up with any “make do” options.Good luck
Rebecca
Hi Stanley, I am quite sure once your SCT is over and you are feeling well, living life normally, forgetting what the hospital looks like, that you will revert back to normal also and start planning long term – it is impossible not to. You will feel so well and feel as tho you have your life back why wouldn’t you? I found after sct to be unsettling with the 2 monthly visit but now my results have normalised and am in CR I have settled down. I guess it’s just getting used to a new “phase” and, as in every phase, repeatedly disciplining your mind to just not go there. Without sounding melodramatic I do feel that death sits on my shoulder, but like an old companion, and mostly silent and asleep now. I feel so well and am so busy now that I love planning ahead. Unlike you I don’t want to know when it will return as that way I can remain in denial and believe it will be 10 yrs. They say 90% of cancer patients live in denial and I don’t see what’s wrong with that it’s a happy, comfortable place! Even cytogenics can just give a “probable” because they react differently to each individual disease and I read of a guy who was very high risk but has remained in remission for 9 years- crazy eh? We must all be disciplined in mindfulness and not “going there”. I know a lady who has survived breast cancer for 10 years now but has worried so much over these years about it coming back, and still does now after 10 years, that she attributes her IBS to the worry etc (don’t know if this could be medically true but she has certainly made hard work of a wonderfully long remission!). I have never had counselling as I believe I use exercise to the same affect but would seriously worry they’d burst my denial bubble! It all takes time to get back to normal and plan normally but I guarantee you will naturally slip into it. My consultant has always tried to advise me to gauge myself/mm on how well I feel and not to worry about numbers – whilst I still ask for everything I do try and remember this as I feel so well it makes me very hopeful for the future.
Rebecca
Congratulations, looks like your last course could get you in complete remission – the best starting point for SCT. Think you’ll walk the SCT – now I’ve done it I’ve come to the conclusion that it’s treated as some really huge stage but I think it’s just another treatment – none are pleasant and some better than others but we all just grit our teeth and get through it. 6 months after SCT I find it a really distant memory as I have regained fitness and energy levels and it’s like I’ve never had it done – very strange. (would add tho’ it’s firmly imprinted on my family’s brain and not forgotten by them at all) I don’t want to belittle the process because it is tough, as are all of them, but I think when you are young you recover so quickly. So I guess I would say make the most of the time beforehand – all the family – cos I think it seems to be tougher on them to watch. One more hurdle….
Rebecca
Hi Nikki, that’s great news – had my SCT at Xmas and I never got sepsis either – guess they just try and forewarn you but I think in this game it’s better to just get on with it and see what happens as we are all different.
Hi Simon, Don’t worry about SCT – had mine at Xmas ( stem cells returned on my actual 52nd birthday!) back to normal, all Ok, no long term after effects at all – cept the hair loss!. I think the younger you are the easier it is on your body and whilst I won’t say it’ll be a walk in a park but I do think you’ll go through it and wonder what all the fuss was about. If you have had CDT I think some have said this a tougher regime – I think a lot is made of SCT but really it’s just another treatment and you’re young enough to shrug it off quite quickly. SCT is not nice – neither are any of the treatments but it’s doable and forgettable. After SCT and being drug free and the prospect of a longer remission makes it all worthwhile. Stay strong and focussed.
Rebecca
Hi Keith, Great news hope you are planning lots of celebrating. Take care,
Rebecca
Thanks Jill, This is so amazing that she has managed with such high light chains – my kidneys got killed on just 1120! I think it highlights to us all that we all have a unique and individual disease and we must remember this when reading literature. Everyone is so different – and sometimes in a good way. If I were the consultants I’d be researching your mum to try and ascertain how she’s managed to cope with such numbers without damage – and then bottle it for the rest of us! It’s always nice to get periodic updates as you remember the original stories but then never hear from many again and wonder what happened. Best wishes
Rebecca
Hi Vikki, so sorry to hear your news – I believe remission is over when the numbers more or less doubles each time over 2 consecutive results – treatment starting when it needs to. I believe Jan had her levels rising well over a year+ without treatment so you can still perhaps get a long drug free time. Not sure what Colin had pre SCT but presume it wasn’t velcade which is what is usually offered on 1st relapse. I found velcade to be both kind and effective with just tiredness as a side effect but very manageable. No hair loss, a little jab a week, only downside being the dex, can work all the way through it. As you know there are lots of options to stamp it down again and look at Davids recent post – gone onto revlimid and is in excellent remission for the first time in 5 years!( believe standard route is velcade then thalidomide the revlimid – unless you look at a second SCT?) Take this opportunity to treat yourselves and plan to do lots on the assumption treatment is lurking ahead – I believe “treats” not only occupies the mind but lifts the mind/body. Remember also no treatment can be as bad as going through an SCT so physically he should sail through it, concentrate both your efforts on working on the mind – MM to me is a huge mind game and that’s what we have to tackle. Stay strong and take care.
Rebecca
Hi Rachel. Glad to hear you are transferring him to Nottingham – this is an excellent hospital for MM – I don’t go there but have read of others on here who do and get access to really good treatment and trials – think Prof Jackson? is the man to see. I went to Leeds for a second opinion and treatment there but Nottingham was on my list but further to travel. Even I know following velcade tends to come thalidomide and revlimid and other new things, or combinations of drugs etc. Your consultant or GP can refer you, my consultant was happy to send me. I would phone Ellen on the Helpline and arm yourself with knowledge of what can/should be done and how to get it done quickly. Good luck and glad to see you’re taking control. It is shame that you have to fight both MM and inadequate care but I’m sure you’ll get there. Stay strong and focussed.
Rebecca
Would say thanks Kay but a bit disheartened that what I want is out of reach. I have spent far too long trying to research – and inevitably researching a lot of negative stuff in the process. Yes I would like access to this information though would probably read some it through closed eyes like watching a horror film! Annoys me as much as when my consultant just says he’s “happy” and trying to end the consult without giving any details at all (not an unfamiliar story). I so want this info now and yet am aware that, like my lovely consultant, depending on where you are in your journey some information could have a negative impact. I have poor cytogenics and this was withheld from me until I found out accidentally – it was only then that I was very grateful not have known for the previous few months when I could have spiralled further down – but was in a better place when I found out and was then glad to know. I guess my researching skills aren’t that clever because I know others have managed to find so much more depth than me but I would love the opportunity to access such info easily and be allowed to judge for myself when I am ready to “look”. How do you think we can change this?
Can what you/or others have accessed be shared or is this contravening professional codes.
Rebecca
