Hi Izzie, when you want to hook up just private message me – I met another lady recently who had gone thru SCt etc recently like me and it was really therapeutic because we talked non stop about things you can’t share with people who haven’t been through it – I don’t think anyone can even imagine it so I don’t bother talking about it to anyone – I also got lots of tips etc as she was a bit further on than me. Hair loss is massive to me – I lead my life trying not to acknowledge my condition – very much in denial – but every time I look in the mirror (without my wig) it acts as a horrible reminder – I too wasn’t bothered at first – bigger fish to fry – but now I’m over the SCT and feeling better I really want that bit over as well! Fat chance.
People, like me, who talk about light chains it’s because we have light chain myeloma – often there is very little paraprotein to measure with this type of myeloma and so the common measure tends to be the level of light chains. It sounds like you don’t have light chain – or Bence Jones myeloma- and so you can track your progress on the decreasing (hopefully) of paraproteins with a view to getting to zero or as near as damn it. People also generally want to know their haemoglobin level – obviously if it is low this can explain some fatigue etc as you may be slightly anaemic.
Trust me you will get over this blip and start to feel better
Rebecca
Hi Mandy, when you think the nightmare can’t get worse it goes to a whole a new level, so absolutely gutted and sorry to hear your news and predicament. I think if you ring the helpline you may be able to get in touch with someone who has gone through a double transplant – its the peer support group/sponsor I believe. The myeloma beacon site also has many allo transplant patients/survivors stories. I know you had a very rough ride with your first SCT and there is a very long recovery period after an allo – can the hospital put you in touch with someone locally who has gone through it?. Presumably you have time to decide so I would use this time to slowly gather and digest information and perhaps have some counselling also – think this is the time to use this option. I am always taken aback when consultants put a time frame on things as it seems so definite – but it is only an opinion – my consultant refuses to talk personal prognosis as he says you never know what’s round the corner (he is a very kind man and I know now I don’t want to know as it diminishes hope – something we all need).
How the hell do you tell family this? no idea. Personally I would keep this to myself until I’d had time to get my head round it, digested it, and made my decision- this is your decision alone. I would never pass on the suggested “timeframe” to my nearest and dearest I think it’s too hard to live with and it’s one persons opinion – obviously your family are aware of the severity of the situation anyway.
Stay strong – don’t let it rob you of making the most of your time – this is at least one thing that you know is in your control.
Take care,
Rebecca
Hi John. just keeping crossing the days off your calendar and every day will not only seem like one day less to go but also a big achievement just to get through it – be proud how strong you are and that you are a fighter. Have read on the US web sites about the mix with velcade and that it is a very effective combination but not heard of hospitals using it over here yet – yet another plus point in your favour.
Stay strong
RebeccA
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!
