Sarah, Thank you for letting us know in such an eloquent way and taking the trouble to do so. I am just so very sorry your time together has been cut short.
Rebecca
Hi there Sarah, I had my SCT at Xmas – I am 52 – now fully recovered from it all with no issues ensuing. The process you can find in the docs in the information section and you can search under SCT I think “buddies wanted” will give you postings from some who were going through it earlier this year. There are lots of postings on this subject. MM is very individual and so is how you/your body will react to SCT – I have heard someone who had CDT say this seemed worse than the SCT process and the “high dose” chemo, for me/many, was an anti climax as I didn’t feel any different/effects until all bone marrow had been wiped out. SCT is, I guess, major and mentally we see it as a huge hurdle/burden also so you have 2 things to contend with – the physical side effects and a real mental low – not a good combo. Until your stem cells graft I think it’s a given that everyone gets S&D – to what extent is individual – you will be weak and have the added anxieties of worrying about catching an infection – most of us are told its not the SCT that will kill you it’ll be an infection. Someone once told me SCT was a mindset and you really do have to overcome that, for instance, I am a very strong person but was gradually crushed by lots of nausea and S & D that seemed constant throughout my waking hours as I recovered. I felt too weak to keep trying to drink/move/get up and get a drink yet when the need arose I ran to the toilet like a whippet out of a trap! – so was I too weak to do things myself etc or was I mentally too weak due to sustained illness? as I could sprint like a good un and it was only when this was mentioned that I thought about it and knew I could do more but mentally had been worn down. I thought I would sail through SCT with a strong, no nonsense mental attitude but I didn’t until I could feel a bit better. I’m not knocking me as I had to have units of blood after as I was severely anaemic, very low blood pressure then I got a chest condition and really bad S & D but mentally it wore me down as there was little respite – this so surprised me. In all honesty I wouldn’t read too much about SCT except tips on what to take in with you/what to do with the time and just wait and see what happens – some sail through it I guess due to little side effects and some get bogged down with one thing after another – it is highly unpredictable. I started recovering well after being out about 6 – 7 weeks and never looked back. I think it is like childbirth soon forgotten by the patient when you start to recover – the rest of the family, however, appear to stay mentally scarred for very much longer as it is very harrowing watching/the thought of a loved one undergoing such a process. What everyone says, and it is so true, is that its not pleasant but it is doable and it is for a short period of time. All the family should have lots of treats pre SCT and pre the slog of it all and it should be all back to normal by Xmas – although you will then be very mindful of winter germs/bugs – another worry. From a patient point of view I would say the family MUST always hide their worries and concerns and be forever positive about everything and.. not play nurse maid too much when back home and assist your mums recovery – like every recovery – by helping her help herself. It is not going to be easy but then nothing to do with MM is but you will come through this and then put it behind you all and get back to normal living for, hopefully, a very long time . Good luck with it all and do try not to worry remember when it all begins that “worrying does not empty tomorrow of its troubles, it empties today of its strength” – something you will all need. Best wishes
Rebecca
Hi, no-one ever told me not to dye my hair whilst on chemo so I continued as normal with lots of highlights throughout and it was ok – my hair was in very bad condition throughout the chemo but seemed to look ok with regular trims and….. anything about hair is not in the slightest bit trivial – 7 months post SCT with strange, alien unruly hair of a total opposite colour to my own takes up so much of my thoughts – much more than MM now!
Rebecca
Wow Carole – that looks long how long actuallyis it? – I’m quite sure you’ve measured it! Think you’re an A* on that regrowth – had my SCT as a Xmas present and it started sprouting in March after 9 weeks but I have only 1 1/2″ and 2″ in some places – my hair always was thick but this is wavy and trying to curl and is so dark. Not taking my wig off til XMas as I couldn’t bear to look at this unruly mess on a full time basis. Did go for a long walk in the countryside without it and that was fantastic – so I’m choosing my places carefully to be liberated.It sounds very trivial but losing my hair was the worst thing of it all – everyday I look at this strange dark thing on my head and am reminded until I pop my wig on and I feel normal again. Love a wig for work I just pick it up from the floor where I tossed it the night before and I’m good to go in a style I like! Have you tried straighteners on it? my hairs not enough to go in the straiteners yet but I’ll be frizzling it as soon as I can
Rebecca
Rebecca
Yes, unfortunately I think it is. It takes a while for bloods to recover so he may be anaemic and need a couple of units, or plasma may be low, or most likely he will be having antibiotics infused if he has a slight high temp and starting with an infection – all easily sorted and he is in the best place. After SCT I had all sorts like your dad but once at the hospital it was all soon rectified. Try not to worry as the worst bits over with just see this as a “snagging” problem. Took me about 7 weeks out of hospital to feel that I wouldn’t be having to go back in again.
Rebecca
Hi Sarah, My harvest took 2 days in that I went the 1st day had a blood test told 1hr later sc’c not ready. Next day I went and the harvest was done in about 3 – 4 hrs. I think it’s the timing of the injections that will have you done and dusted in 1 day or waiting around – I certainly didn’t have many – not as many as it says in the booklet – about half that – had I started a day earlier with them I would have been done in 1 day. Totally a non-event and in the great scheme of thing probably the most pleasant procedure I’ve had. Would add you can get really bad pains in chest/back – large bone areas which is a good sign that the little critters are jam packed and ready to come out. I only experienced it the night before I had sufficient for harvesting. Pains were horrible, pulsating, a bit labour pains. Paracatemol did take the edge off, was told at harvesting that some people only got relief from them by being on all fours – again like labour! That was the worst bit about it and am told some people, if they weren’t forewarned – thought they were having a heart attack with the chest pains. I was told not to worry if I didn’t get any pain as you don’t have to experience it but when I did get them they said that’s a good sign that you are ready – so just be forewarned of it. I never had it passing through both arms but had a femoral line put in for it – tube in the groin – so arms were free. Felt really good when I finished it as tho’ I’d passed an exam and got a decent grade and it was one step closer. Happy harvesting!
Rebecca
Hi, When I was on treatment and recovering from SCT I have always been mindful that this is my disease and whilst it inevitably affects the family I have tried hard to minimise its impact. I always used to plan little treats for me – even a coffee with a friend – to brighten the day and I think partners should do the same. As soon as I recovered sufficiently from SCT my hubby went abroad doing his hobby – I know at diagnosis he felt his life and future, as he knew it, had ended and he would never do these things – but he does and is all the better for it. When I was on treatment and my daughter wanted to travel abroad doing stuff they went with my blessing and had a great time – life must not stop – do not let this disease take your life away without a fight. I have a friend who’s husband has had a terrible time with another cancer and she got so depressed she took an overdose – and she was the well one! You must find “your time” be it a new interest, craft work, coffees, pamper sessions, quiet time in the library even – anything away from the myeloma bubble. I am sure your husband can be left on his own for a little time at least. It is refreshing for both of you to have something separate, that’s yours, to do and I am sure your husband would welcome this as he no doubt carries a lot of guilt at the impact this has had on your life. I would suggest you actually write a list of things you would like to do that would brighten you life and reckon on how much time you feel comfortable leaving your husband alone. It is doable if you want it enough and would be good for both of you. Good luck
Rebecca
Hi Patricia, You have time to teach him the basics – and perhaps its time he learnt anyway! I know how you feel I was very rough after SCT and had to be looked after for a while after but it all worked out. I actually went to hospital with so many jimjams etc so I didn’t have to rely on washing for the whole of my stay. Stocked up on school uniforms so knew that would be Ok also. (In fact SCT was quite pricey!) A lot of people are on their own during the day when you come home – hubby would give me breakfast then go to work – it was fine. I did a deep clean of house before I went in and bought some new bedding etc so I’d have plenty changes without anyone having to wash during the week etc. I wasn’t mollycoddling hubby just being practical in making sure things ran smoothly without adding anymore undue pressure on him – he did have work as well. Just work round it – you can always get a cleaner in if you’re worried. Make soups and stock the freezer before you go in.It’s all doable, don’t worry.
Rebecca
Hi Robbo, Well now you have a plan to focus on and a future to look forward to after your SCT. I am quite sure you will sail through treatment/SCT as you are young and fit (presumably – if not..start now!) I am 6 months post SCT and back to normal and tho’ it is now a different mind game – getting used to check ups and being anxious about the results – it feels like normal again. I guess you will always be on a journey with this thing it will just take different twists and turns. You have the right attitude for this as you need to be strong, focussed and ever positive. Your head will be a shed for a long while yet but you do eventually reach a “calm” and acceptance. Someone on hear once said “worry does not empty tomorrow of its troubles; it empties today of its strength”. I always tried to remember this throughout my treatment and even now as it is so true. Someone else said “Turn that basket of worries into a basket of wishes” and at one stage I literally turned a negative into a positive wish and wrote it down and put it in a jar! when I did I actually stopped worrying as tho I had closed a door on it! I am not “new age” or anything but was willing to explore new ways of thinking and techniques to help get my head round this/new way of life. This is a huge mind game so concentrate as much, if not more, on your mind as well asyour body. Good luck
Rebecca
Hi to all you newcomers, welcome and good luck with it all. I have just read this thread and am so surprised that you are given a prognosis in years with all the new treatments coming up changing the game plan. I was diagnosed at 50 with kidney failure and was lucky to survive but I did/do. I wasn’t eligible for trails as they didn’t think I’d get to SCT and was given velcade. I did get to SCt at Xmas and am back to normal albeit the kidneys (but not on dialysis). My Dr always refused to give a prognosis as stats are based on older treatments and everyone is different. However, a few years ago without velcade (kidney friendly) I would not have lasted 4 months (actual stats) and here I am, well, working and as normal as I can be after all this! Everyone try and remember this is an individual disease that does not affect any 2 people the same – I have read of someone with aggressive myeloma who has been in remission for 9 years, met a lady at the hospital who’d at it for 12yrs and not had an SCT. It’s important to stay strong and be hopeful – the younger you are the stronger you are to fight it (tho that is not to say I wouldn’t trade up to getting it at 70yrs instead with more life behind me than on front of me!) My biggest personal advice, based on my own experience, is concentrate on your mind and let the Dr take care of your body. This is the biggest mind game you’ll ever have the unfortunate pleasure of playing – I have read lots of books on Cancer.If you read as many as I have you will come away with a clear message that your mind does affect your body and your healing. The more stressed you the more it can negatively impact your immune system. Breathing exercises, yoga, mindfulness, visualisation techniques can all help you through this difficult time. Sceptical or not – at this stage it’s all worth a punt – it has helped me immensely as I feel you need to be calm throughout this ordeal and that is very hard to achieve without seeking out something different to get there. Do stay strong and ever positive.
Rebecca
Congratulations, that’s fantastic news. You seem to racing ahead on the recovery front and as for hair – mine just started sprouting 9 weeks after. It’s great to hear posts where fatigue is not an issue as I read it’s often a big thing that lasts for a very long time. I hope you can put it all behind you for a very long time and so glad that it’s been worthwhile.
Rebecca
Hi Nick, I had velcade/dex for 8 months – weekly dose/jab. Wasn’t aware this combo caused nausea and I only felt a little dizzy which I attributed to low blood pressure at times. Most common effects from this combo is fatigue – which I had – and neuropathy. Sorry can’t be any help – why not ring Ellen on the helpline in the morning they are really knowledgeable/experienced.
Rebecca
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
