This topic contains 49 replies, has 11 voices, and was last updated by 
tom 10 years, 6 months ago.
Thanks Jane, I’ve sent my wife out for ice-pops as I’ve woken with a slightly swollen mouth. I thinks she’s pleased to get out of the house and the smell of the jolly green giant, ho ho ho. Strange, I can’t smell it at all.
So, the transplant seemed to go well yesterday and I had a good solid nights sleep. Hiccups were a problems yesterday (Thanks Dex!) but these are slowly subsiding. They even gave me a pill for them in hospital (not the one someone mentioned in another post) but it had no effect.
Anyway, as well all say, one day at a time and keep an eye on the end game.
Thanks for all the kind and useful feedback. Let us know your results from your blood/marrow tests davidbr
Keith
Hi Helen
Ye the Dex has it’s bad bits also lol, ye but I can’t knid of later in the day as I am at work and what will my gaffer think lol.
Yes it would be good to have SCT over and done with and recoupe in the warmth of the summer, mine was winter in 2009 and it weren’t good cos I really do feel the cold now.
Do the race is now on and we are off
Hi Tom
My Consultant didn’t have results from BM or blood tests. But he said my SCT has not been a complete success but it is early days and may improve. He says I need to go onto maintenance and go back on the trial with lenithimide and dexamethasone. I need to start Zometa infusions, calcium and aspirin.
David
Three days post S cT and feeling pretty low at the moment with a swollen mouth and throat (not sore), zero appetite (Carole’s right, can’t stand the look of food at the moment), very tired as well and occasional tummy troubles.
I took the option of staying home during the first of my 3 weeks post SCT and I’m trying to avoid giving in and turning up at Royal Marsden before Sunday when I’m due in for 2 weeks.
Keith
Hi David
Sorry your SCT hasn’t been the success you/ we wanted but I have heard that it can get there in time ?!, good luck with the Maintansnce regime and hope your soon into remission.
Hi Keith
Well hope the throat gets no worse ??, gosh you are brave staying at home I was pleased I was in hospital during all mine and am pleased I will be in for this next one due this year.
Fingers crossed for you both .
Tom onwards and upwards xx
Hi
off to meet my consultant at Christies next week and wondered how long between then and being treated I had to look forward too. Currently finding as many small things to do to keep my mi d active as I can. July would be good for me as can cram some small jobs and little break in to give my wife q treat as guessing its been no bed of roses these last few months for her.
would like to get thru my birthday fit and well too which is at the end of june. Or am I just being stupid and should do as I am told by the consultants?
Hi – Have you had your stem cell collection yet? I found that once I’d seen the SCT consultant I was more or less booked in for stem cell collection – the hospital gives you a slot for harvesting and then your hospital works back from this date to get you ready for the harvest collection (sounds like a body snatchers movie here!)- can’t remember now how may days that was – about a week I think for the primer chemo and growth jabs. This process took 3 weeks or so from consult. Only once successfully harvested will you get a either a time slot – actual date to go in – or be put on a waiting list. At Leeds I went on a waiting list – harvestd October, hickman line in 1 November (couldn’t go on waiting list until all prepared) then got a call 10pm 12th December to go in so was in over Xmas) – my consultant had also been badgering the hospital to get me up the list as I had stopped treatment in the July. Others I believe have been given an actual date – dependant on bed availability. Leeds are very busy with transplants.Anyway came out after Xmas and can say I am totally back to normal/fitness levels now (played 12hours tennis last week!). I have had to push through the tiredness to get to this stage but feel as tho’ I’ve never had it done now – very strange. I think all unpleasant things are forgotten quickly when you start to recover – its your family who keeps the memories more readily, unfortunately. I had the option to delay until after xmas but chose not to – cancelled my 52nd birthday as I was in hospital and having it exactly 6 months later with my husbands! SCt/recovery is a slog for all the family, it will basically wipe out the summer for you, so if you want a break etc beforehand I’d just run it by the consultant as it could take some time to get harvested anyway. I think others have delayed for weddings/events. Remember it’s your decision – your levels must be stable at this stage if you going down this route anyway.
Best of luck, Rebecca
Hi just at the end of my 6 month chemo so meeting the stem cell team next. Just not sure who you ask these questions too without looking like an idiot lol. When first found out asked if i could delay treatment till after christmas as had a big job on my consultant basically went mad at me. Can see his point now but at the time was unsure and my first thought was making sure my family had bread on the table.
Glad your doing well and playing Tennis it gives me a lot of hope for me reading all these things and enjoying going to what my wife calls cancer club having my zumatra and bloods taken.everyone is so cheerful its great.
Obviously I want to get to the point where i can do normal stuff and not be wrapped in cotton wool by everyone. So have followed the doctors rules too the letter not drunk alcohol fizzy drinks, i swear i can now tell the diference between bottled water brands, the lot. I havent driven either since i found out.
Keep up the tennis and thank you for answering my dilema so quickly.
regards
anthony
Hi RebeccaR Hi Keith sorry I am high-jacking your original post.
I am having my treatment in parallel with you. I had my SCT on 8th Dec, 2013 but it went we ll and I was out on Christmas Eve. I am also a similar age 59 so am very interested in your mail and how you are getting on.
I am getting better very slowly and am doing more each day. But I still have aches and pains especially my back and if I walk to our local shops and back about 1.5 miles that is it for the day. There is no way I could play tennis. I have been advised by my consultant that the SCT wasn’t 100% successful but it is early days. Because of this he has advised me I need maintenance treatment on a lenithimide and dexamethasone.
My question is have you been advised you need maintenance treatment? What is next for you.
Regards David
Hi David, I actually get my results on Wednesday so will let you know but, like you, there have been indications that is has not fully worked but consultant would not discuss until after 100 days test etc. I was not on trial pre SCT so don’t think maintenance is an option until relapse – did ask SCT consultant about maintenance after but he said no – obviously may change dependant on results – not bothering to second guess at this stage. If I hadn’t SCTd I would have gone on to thalidomide so guess this will be my route at my hospital – just the usual choise thalidomide then revlimid when its stopped ets. I have never had bone damage (yet) my problem is kidneys gfr around 27, I have however suffered with nerve damage after the SCT – for weeks felt like I had walked 10 miles and pulled all my calf muscles and toes are uncomfortable but as time goes on that is getting easier. For say 1st 9 weeks could do very little then just threw myself into exercise and have regained fitness quite quickly – I do an hours paper round (for my daughter) each morning and this routine really helped me get better as I could tell each week how much easier it was to do, I walk probably another 2 hrs + a day and play tennis as much as I can – 2hrs double slots. I was struggling to stay awake past 8 when I first started getting fit but that just seems to have disappeared now. For me exercise helps me so much mentally but I really do think since I threw myself into it my recovery has gone from strength to strength. I am a bit of an “all or nothing” person and do think I’ve overdone the exercise but am staggered by how it’s helped my recovery. When I first started walking I had aches and a stiff back but I think it was because I was on my back for 1st 7 weeks and the more exercise I have done they have all gone.
Rebecca
Hi Rebecca, Apologizes to Keith again
My first signs of Myeloma were when I lifted a heavy table in Jan 2013 and my back gave way. Went to docs, 1st DR one gave me a exercise sheet and told me take Paracetamol. 2nd DR asked if I wanted a “sickie note” then he gave me Naproxen which caused kidney failure. Luckily 3rd DR a locum took me seriously and realised I had Myeloma and sent me for tests. Had X-rays which showed 2 crushed vertebrae. Myeloma confirmed after bone marrow test May 2013, then 4 cycles of CDT followed by SCT Dec 20013.
Saw Dr Kamat my consultant at Darenth Valley Hospital 01/04/2014 and he said SCT was not complete success and I should go back on trial with lenithimide and dexamethasone. No BM or blood tests results yet.
My wife was hoping the SCT would be a success and I would be fixed and drug free for a few years but she was disappointed and quite upset. I had to explain I thought Myeloma didn’t work like that and I would always need some form of treatment.
She would like me to refuse the maintenance and go drug free for a while as is seems the drugs make me ill not Myeloma. But I am worried Myeloma might get worse if I don’t.
Any opinions on whether to go back on the trial and have lenithimide and dexamethasone would be very appreciated.
Regards David
Hi David, I think if you look at the statistics of SCt very few reach stringent complete response or even a complete response – altho’ we all pin our hopes on it. Also some who have achieved SCR have found it back within the year. As I have never been on a trial – where the opportunity for maintenance is there – I won’t get it. I saw Prof Roger Cook at Leeds (a leading guy I am lead to believe) and when I asked about maintenance he didn’t seem too pro maintenance because he said it was using up an option sooner rather than later and you would get it when you need it anyway (it might, however, have seemed that way because he knew I wouldn’t get it tho’!). Research from US does give longer survival stats (but not that much more) with maintenance but do you have balance that with quality of life/side effects and the fact that MM is so individual who really knows how it will pan out for any individual? I hate taking drugs and felt so much better mentally/physically when I came off them pre SCT it was like being normal again – no dexy days, no tiredness etc. it was like a veil had been lifted and I dread going back on treatment – specially dex as I’m vain enough to hate the fat face syndrome! Maintenance now or at first relapse? those who are randomised and get no drugs seem to be very relieved as they have what they want (to be drug free) but the decision has been taken from them – unfortunately not for you. I would trawl through the Myeloma Beacon site as there is a lot of info on this subject in the News and the bloggers who seem to have taken various maintenance for years.
Good luck with whatever you choose.
Rebecca
Sorry to have dropped off the radar for a while. My time in hospital post-SCT was much harder than I had expected.
I felt very unwell at times with a swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. For reasons unknown I had my dreaded hiccups back (normally comes with steroids), my temperature went up to 37.7 and my blood pressure down to 90/60. The nurses dealt with all of my issues but we never got on top of diarrhoea.
I’ve been home 3 days now and although I still have no appetite, my sore throat is very gradually feeling better, hiccups have gone but diarrhoea is still an issue. I’m having a full review on Thursday so I’m hoping for some good news about my blood recovery.
Hi Keith
Sorry you have been unwell Keith, I went through that when I had mine in 2009, even post SCT i was near bedridden for about a month, the young bride used to make me a pack up and flask for me when she went to work (in case i wanted to eat ) it took its time Keith to be honest but one morning I just woke up and felt OK and i mean OK just like I turned a corner during the nite 🙂 the dog knew and when the young bride came home she knew just looking at me It were great.
The above will come to you Keith in time I took it one day at a time never put pressure on myself just went with the flow.
Keith the Diarrhoea is one that will be with you for the longest am afraid as and when I started to eat properly I could not go everywhere till I went to the Loo,it calms down but I do know its in charge ha ha.
small tip for eating at home :::small plates with just a little on I used to nearly be sick when Elaine brought the food in as I could not face it, so Elaine brought it in in small plates so as not to over face me with it.
Good Luck in your road to remission its not complete yet but well over 3/4 done
Tom Onwards and Upwards xx
I had my post SCT review 3 days ago and apparently the transplant has taken. Cells have grafted to my bones and have rebuilt my bone marrow. My neutrophils are already back to “normal” levels so I’m all set to climb out of the after effects of the Melphalan which can’t come quick enough. Still no appetite and feeling tired but each day I think I’m feeling a degree stronger.
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