Hi Keith, wow what a good collection you got – hope all went well today – have you noticed the smell of sweetcorn permeating from your pores? bet your wife has! – take care, eat well and brace yourself for a little bit of a dip in the ride over the next few days but then you’ll be back on the up again – they don’t call this a rollercoaster ride for nothing and there’s no stopping if you want to get off! so go with the flow and it’ll soon be a distant memory.
Rebecca
Thanks for sharing Helen, gives me better idea, hoping I don’t go curly as I was prone to when it went long and have not yet met anyone with cancer who hasn’t gone curly – chemo sure screws the body up (as well as the mind of course!). The blonde certainly suits you best.
Hi John, my husband only came once a week at weekends due to the travel, work and daughter. Even then after about 40 minutes it was too much for me – not enough energy to talk much etc and so I found it just as good, if not better, to keep in touch by phone each day for short spells when I felt up to it/awake. You can also Skype but I never bothered. It’s quite a trek for your wife and often phone calls can put their minds at rest just as well. I felt much happier that way because no matter how grotty you feel its instinctive to put a brave face on it and this is often very tiring, was happy to stay curled up in bed. Unlike Richard I felt too nauseous to move most of the time so only moved from bed to bathroom back to bed for the whole of my stay!
Rebecca
Hi John,
Good luck with it, it’s a strange time now this waiting to go in it’s almost like the excitement and trepidation of going on holiday somewhere new. I was more excited, than anxious, hoping that the SCT would do the trick and I’d be drug free – concentrate on the end goal. When I was in I had in mind I’d be in 16 days (was in 18)and each day I would cross another day off my pad and think one day closer to home. I think I saw it as a short stay in jail and no matter how crappy I felt I knew that when I crossed that day off my calendar I was 1 step closer to feeling better and going home. Nothing is that bad when you focus on it being for a short period of time and when you start picking up and know you’re over the worse it’s so much easier. When home I quickly forgot about it as soon as I felt a bit better, I never dwelled on it as far as I’m concerned it was done and dusted, but unfortunately, my poor husband still talks about that time and I think is/was quite traumatised by the whole experience. I think it is very hard for family, I only allowed my husband to visit and I spoke to my family on the phone with cheery updates. Make sure your wife is well supported as she will need it as much, if not more, than you!
good luck,
Rebecca
Hi, the ultimate goal is to get down to 0 pre SCT, 1.9, I believe, is a very good achievement and know some go to SCT with this level but would go with the consultant on no. of cycles pre SCT – I had 8 cycles of a different treatment and levels didn’t budge much at all after 5th cycle but continued with maximum to reinforce the treatment I’d had. I’m sure you’ve not much further to go be it 4 or 6 cycles pre SCT.
Rebecca
Hi Helen,
Just wondering how long did it take to get your hair to the length on your photo please? Think MM has made me obsessive about things – stopped obsessing so much about MM (for now anyway) – but transferred this to hair! Want to wear a wig until its about your length in the picture but its probably not doable. Always had shoulder length hair and don’t seem to have the bone structure to make short look good.
Rebecca
I’m sure growth is imminent, literature says anything upto 3 months to start growing. wouldn’t shave off your hair – every bit of length is precious. Will say that once I noticed it coming back seems to grow/thicken up quite quickly – or that’s the illusion when you’ve had none. I have read of a couple of others on here who didn’t lose their hair in the process (men).Strange.
Hi Carole, I went totally bald again when in for SCT and it started sprouting 8 weeks from cells returned but I think I only noticed it because I was bald, has come back a total different colour, very dark but no grey heirs in it! Only a handful of people know I have cancer and my wig is more or less the same as my “natural colour/style” so no-one has noticed the transition but don’t know how I’m gonna explain the new colour!hoping it won’t go curly also as it grows. I’m keeping a wig on until its of a normal short length style but find the cost v. expensive as the wig I have looks very natural but doesn’t seem to last long ( I wear it all the time except in bed). My regrowth now is not bad (was my 100 days BMB yesterday) but now have to wear what looks like a pair of American tan types on under my wig to stop it slipping with my new hair! Trials and tribulations of vanity eh?
Rebecca
Hi Keith,
Glad you are feeling so well, must say I felt great after stem cell collection almost immediately but I think it was like a “burden” had been taken away – what with the primer chemo then the bone pain following the jabs – never experienced anything like that pain not even labour pains, really drags you down, so once the collection was over felt really good – think its also quite a relief, mentally, knowing you’re one step closer.
Hi Mandy,
Glad to hear you are responding and putting up a championship fight. I have often thought of you and wondered what happened at your referral as you had really been through it then, let alone now. Keep it up Mandy – guess now you can say with authority that it can’t get any worse! Will they be looking at another SCT or allo donor for you as you have age on your side?
Stay strong
Rebecca
Hi Carol, I should have gone back to work 20/3 (3 months) but knew if I did I wouldn’t have the energy to exercise as well so I have chosen to stay off for now and just get fit/normal again. My employers don’t mind as they’re not paying me now and did say everyone still had lots of coughs/colds there so am glad I don’t have to risk it yet. Take care on your return.
Hi Keith, glad to hear your collection went well and your SCt is soon – its not pleasant but not much worse than being on treatment and you know its only for a short while and the goal of “drug free” is nearing your grasp.. Good luck and stay strong – I think attitude makes all the difference with the SCT process so am sure you’ll be fine
Best wishes Rebecca
PS I read a lot of posts about how much weight you lose during SCT so went on a binge and actually gained 10lbs (as I didn’t want to lose too much and look ill).Suffice to say I only lost 7lbs so am now having to lose the excess!
Great news David, it is always encouraging/uplifting to hear such good news and recognise that MM is so individual we cannot fully predict its path and acts as a reminder that really good things can happen too. Long may it last. Rebecca
Hi John, I would ask at your consult about whether they’ll use all, or store, some stem cells. I also got 4 million collection which is the bare minimum for 2 transplants but Prof Roger Cook of Leeds ( a leading guy in the MM world) used them all so it would be better for me than using the bare amount – which makes sense. I queried some research I’d read that collection the 2nd time round for a transplant wasn’t as good and he disputed that and had “yet to be revealed” research” that showed no difference in collecting again further down the line.
with regards work they say 3 months and I guess I could go back to work now but have taken another 2 months off as I work in a big centre where everyone seems to have coughs and colds at the moment so am going back 1st June when winter illnesses are out of the way. When you have spent a long time isolating yourself from germs, shopping centres etc, I find its quite scary to go back into an “uncontrolled” environment. I am using the time to get my fitness levels back and waiting to enjoy a bit of nice weather. Not enjoying getting paid tho’!
Best wishes
Rebecca
Hi John, If you go into the Information section, click on Initial Treatment and scroll down to downloads there is a comprehensive guide called High Dose Therapy and ASCt that will answer all your questions and more. But I will quickly run through your questions (had mine in December and am now, would say, fully recovered from the process.
– The HDT standard is melphalan and is administered via your hickman line – which you will have in place beforehand. Prior to the HDT you have extra fluids administered via your line to help protect the kidneys. The melphalan doesn’t take too long – not talking hours but can’t remember how long exactly.
– Some hospitals then give a days break before the stem cells are returned – I had mine the next day but 24hrs after the melphalan. They brought a machine into the room with your frozen stem cells in and warmed them up then gave them back via the hickman (or central) line – takes about an hour.
– After this you just lay back and wait for them to grow new blood cells in the bone marrow – say 10 -14 days. You may have some growth injections (G-CSF) to assist the process. This waiting period is the time you will have little resistance to infection – hence being in isolation and you will feel pretty crappy – you’ll take various tablets like ant-viral and antibiotics to help your body and everyone will be watching for temperature spikes which may indicate infection but they treat it very quickly. When your counts are up enough you go home! Expect a stay in hospital between 2 – 4 weeks. I was told most people tend to go home nearing the 3 week mark but it all depends on your reactions. The info guide will tell you much more. The whole process isn’t pleasant but remember its only for a short period of time so is perfectly doable and quickly forgotten. I wouldn’t hesitate to do it again so it can’t be that bad.
Regards,
Rebecca
Good luck
