"Reboot to Factory Settings"

Ok, here we go. Just about to take my darling husband into Plymouth hospital to begin the SCT.

Booking in today, start of chemo tomorrow.

I shall miss him so much, just being round the house and being there for a cuddle.

Custard x

  • Good luck and hope it goes well.

    My wife was there most days in the week leading up to the SCT. The day of the transplants the kids were there as well when it happened. She then was about probably every other day after wards until I was discharged on day +15.

    Her hugs helped me get through it all!

  • Hi, hope all goes well and its as straight forward as it can be and that he is back home soon.

  • Hi Custard,

    Wishing you and your husband the very best. Anything we can do to help during this tough time, we are here!


  • Fingers crossed for you both, Custard.

    Lots of people rooting for you.

  • Love and hugs for you for all the anxious times in the next little while.....

    I know it's tough, bless you, and you'll be tripping to and fro in addition to all you do otherwise, plus extra laundry and cleaning home to the n'th degree ready for him coming home.....( been there too!) 

    More hugs xxx

  • Fingers crossed all goes well! Set small goals, and keep spirits high in his room.

    Love the analogy by the way!.. Although I'd consider it a software update really! hahah. 

  • Wishing you both an uneventful transplant journey. Drink lots of water and get up and move around as much as possible. Big Hugs! x 

  • Fingers crossed!! Hope all goes well! xxxx

  • So tired...I got about 3 hours sleep last night - we had a difficult and emotional day. And it's almost and hour and a half to the hospital, so a long drive. And we've only just started...

    Today my husband has had red and platelet transfusions, some drugs with very long names to try to prevent side effects and is having his first dollop of chemo now.

    The staff are very nice and kind though and that's good.

    Worn-out Custard x

  • Awww, Custard, 

    I know that incredibly worrying, frustrating, exhausting time......do take care of yourself, it's a long haul so accept any offers of help from friends and relatives, you'll need them! 

    Sending you massive hugs xxx

  • Thank you all...lovely to know there's understanding here.


  • Today he is having fludarabine and busulfan. Drug regime getting tougher. The worst bit of the chemo is expected to be the weekend when he has AT-G which I believe can cause really horrible side effects for a couple of days. Anyone got any experience of this?

    Custard x

  • Hi Custard, 

    No, not heard of that, sorry......but if it's a Melphalan replacement ask about using ice, sucking ice chips before, during and for a good while after will help prevent the worst of the mouth ulcers. It's usually the final drug in the regime. 

    Hugs xxx

  • I believe it's an anti GvHD drug. Seems quite specific.

    No melphalan for my husband...and after I had taken all your ice advice on board!

    I wonder how they choose drug regimes for conditioning. Do individual consultants have their personal favourites?

  • Hi Amnesia,

    My Mum had a stem cell transplant for AML last May and she had that drug- it's meant to prevent GVHD. Like you, she was told that it came with the worst side effects and to prepare herself for feeling quite rough. In the end, she didn't have a single side effect from it. So perhaps your husband won't have any either? Fingers crossed anyway! 

    Wishing you the best of luck x 

  • Hi Custard, 

    Yes I suspect differing consultants do have their favourite regimes, plus of course drugs are improving all the time, so choices inevitably vary. 

    Hope you are coping ok? Take care of yourself, as a carer you do get a sort of second wind! 

    Big hugs xxx

  • Hi custard

    hope all goes well I have been told today I will probably go home next week, fingers crossed.

    I am sure your hubby will be fine, just. Be there for cuddles and support!

    love Di xx

  • Hi Di, 

    That sounds really good news, getting home (albeit with a load of meds to take) will be a great move!

    Hugs xxx

  • Thank you all for your lovely support.

    JaneH...so pleased top hear your mum was ok on AT-G...it's certainly the one that comes with the most unknowns. Did it work for GvHD?

    Di...really pleased to hear you're doing so well and planning your escape already! That's brilliant news.

    My husband is doing ok. Day 4 of chemo today and it's a "lighter" day, if that's not an oxymoron when it comes to high dose chemo! He's had some sickness on the busulfan, but the staff have been extremely good about managing it and so far he's not been too bad. His white counts are beginning to drop now, although it will be another couple of days before they really plummet.

    Don't know why I'm telling you all this really; you all know it already! Been there, T-shirts galore....!

    Hanging on by fingernails Custard x

  • Hi custard

    i was on ebulsafan and ATG the ATG was given to me for three days at 12 hours a day this is the strongest chemo. I did get bad diarrhoea and some sickness and a sore throat, BUT it all passes after a few days, your husband will be fine and he is 10 years younger than me.  What cancer has he got as mine is myleofibrosis? He is having the same regime of chemo as I did


    Di xxx