Diagnosed July 2020

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HI, just joining online forums now as I had my head buried in the sand and did not want to acknowledge cancer.

I am on dex  lenilidimide regime as I reacted to Velacade, and am now waiting on SCT. 

Wondering about the SCT as I am quite anxious about it. Anyone been through it that  would  want to give me some tips/advice?

Thanks

C

  • Hi C,

    Welcome to the forum, although I am really sorry for the reason you had to join. Is it an autologous (your own stem cells) transplant that you are going to have?

    Mine was over 5 years ago now so the memory is getting hazy. I think everyone’s experience can be unique, but I think the broad themes I’ve seen whilst being on this site are to expect to feel poorly for a few days and to sleep a lot. I think taking something into hospital that will occupy you is also quite key as there are long periods when you’re not doing anything and can get quite bored. Beforehand, do whatever you can to get yourself as fit as possible - perhaps even put on a few pounds if you can as you’re likely to need some strength over this period. I wouldn’t worry about it too much, the medical teams have become so good at knowing what to do and they have pretty much seen everything before so should hopefully be able to deal with every scenario.
    I hope this helps a little bit. There is also a Stem cell transplants for blood cancer forum part on the forum that you might want to check out as well. Sometimes you can link up with someone who is going through the process at exactly the same time as you and this might be helpful for a bit of morale support as you are going through it.

    I am wishing you all the best for the procedure. Whilst it is something I would never choose to do, I just tried to see it as a necessary evil to get me where I wanted to be, and I am really hoping that you will have a relatively ok process and get yourself back to fitness really soon.

    Greg

  • Thanks  Greg for your reply and helpful information. It is great that you are now 5+ years post SCT.

    I am having my own cells returned. They were harvested  on 5th January 2021. The delay is due to the backlog created by covid. 

    losing my hair is a concern, not on my head, i can cope with that and have already got it cut short; its eyelashes, my friend had this many years ago, unfortunately she passed, but she always said it was losing her  eyelashes that was the worst as her eyes got dry and lots of dust in them. i was wondering if there is anything that can help with this.

    i have put on weight due to steroids so there's plenty there to come off!   What practical things do i need to bring into hospital? I suppose when i get a date the staff will go over all that with me.

  • Hi, I'm almost identical to you, a month out.  I was 49 and quite fit until a pain in my groin led to diagnosis last June!  I'd say several sets of pyjamas and a decent phone or tablet of you can.  Electric shaver to avoid cutting if appropriate. apart from that just stuff to keep you occupied and toiletries with pure soap.  I met a lady who is 87 and has been suffering since she was 53, so you never know.  Sorry to hear of your friend........

  • Thanks for your reply. My friend died 15 years ago from an aggressive breast cancer. She fought it well and was always optimistic. her courage and strength is what keeps me going now. I view the SCT as another thing i have to do to get back to normality.  As yet I haven't got a date but I had my harvest in January, so it must be close. The haematology consultant and the stem cell consultant work in two different Trusts and my haematologist has not been informed of where I am on the list. I'll just be patient and wait, there are others more in need and I'm thankful that I am regarded as being safe to wait.  Reading the posts on here is useful to give me an idea of what to expect.

  • Don't be afraid to chase it up, best to make sure al is well.  Good luck with everything.