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
Hi Jane,
Was surprised to hear you have been allowed velcade for such a length of time – has this been through private insurance? I haven’t heard of anyone on this site on it for so long but if you want to trawl through the Myeloma beacon site – and the bloggers on there – I have read a few who have been on it for a considerable time as part of maintenance tho’ I believe they all had the PN from it. I had it for the max 8 cycles allowed and was told would then have to move on to something different. Velcade as maintenance is growing in the US and no doubt will be trialled, as such, here at some point. Must say I applaud you for coping with it I had the max 8 cycles (taken weekly and no break) and thought I coped really well – denial of treatment effects! – but once I came off it it was as though a veil had been lifted and loads of energy released.
Good luck, Rebecca
Hi Izzie, Sorry to hear about your predicament at the moment. I used to think SCT was a massive step but having had one in December and more or less back to normal now I wouldn’t hesitate to do it again altho’ I had about 6/7 horrible weeks with the process/side effects – but soon forgotten. I believe there are trials now where people have been harvested and will SCT on 1st relapse but it is the norm to go in early in the hope of a deeper, longer remission. I have very low kidney function and my designated hospital did not want to risk them with SCT and I sought a 2nd opinion and went elsewhere – because of the risks to me I asked about postponing til 1st relapse (as I felt so well at the time)but still they thought it best to SCT me then. I am not being told/having my results discussed until 100 days and I think my light chains have not moved – tho’ we will see as I could still be a “work in progress” – but I am glad I tried SCT and do not have any “what ifs” to torture my mind. You have come so far with the harvest that SCT is just the last hurdle. If you postpone it til relapse remember you will still feel awful pre SCT following the chemo cycles you’ll inevitably have. From a personal point of view one of the worst things of the process was losing my hair at harvesting and it takes so long to grow back to a normal length that I’m glad I had the SCT now so it can grow back and I can keep it (hopefully!) – would hate to have it grow back (ever soooo slowly) then lose it again in SCT process. If you don’t have it now will it hang over you? – knowing that you’ll have it in the future and will you worry that your remission may be shorter because you delayed SCT? Regardless of my final result I am glad I did it as it doesn’t enter my thoughts any more – I find myeloma is equally a mental torture instrument so anything to minimise this is a big plus in my eyes. Remember, you will turn the corner and not feel as tired etc it will just take time. I was harvested after velcade/dex regime so I had the primer cyclo-something for harvesting and I think that dose makes you quite neutroprenic (as well as bald) which you will be recovering from still.
I read your previous posts and note you are being treated, in part, at Doncaster – I originate from there and am there quite a lot (whilst on sick leave) if you ever want to hook up for a chat just sent me a private message.
Good luck with whatever you decide, Rebecca
Carol, This is just brilliant news, congratulations and long may it continue. My 100 days is the end of the month and my Dr doesn’t do an FLC test until 100 days – just to add to the tension!
Rebecca
