SCT UPDATE

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Hello all

For all you wonderful people who have followed my threads over almost 3 years and given invaluable advice, I just want to let you know my wife was re born yesturday with her Sisters cells. Now day +1 and doing well. Started today on ciclosporin to suppress her immune system. We are well aware of the long long road ahead but following her conditioning and transplant, she is feeling OK with nausea and  diahorhea her only issues.

She was given an anti sickness injection day before transplant and had severe hives immediately, unbelievably after one Piriton tablet they completely disappeared within 1 hour, very odd.

Expecting her levels to drop rapidly in next 2 days so will be aware of things that may/are likely to occur.

We are currently staying in the hotel for Ambulatory care patients just round the corner from the macmillan Cancer Centre at UCLH. we are however expecting my wife to be transferred into the main Hospital unit within the next 2/3 days as infection risks increase. That's when I will have to leave her and head home. TBH I will feel much more comfortable in the knowledge she is in the main unit with help at hand immediately should she need it and,she feels the same.

So far, so good, praying all continues well.

Fulhamboy (Nick)

  • Amazing Raised hands 

    some well deserved and  continued good news x

  • That’s amazing progress great news

  • Great new Nick Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi all

    I hope your all keeping safe and well, and to all of you going through the SCT process either pre or post treatment, hoping everything is going well.

    Update.

    My wife is now on day +77 SCT for AML.

    • She is doing remarkably well, still attending UCLH weekly for blood tests and one to one with consultants. Apart from a tiny little ulcer on her tongue a couple of weeks ago, which disappeared after a week or so she has had no other concerns. No infusions, all bloods staying strong. She has one more nebulizer infusion for her lung protection to go and then hopefully move to fortnightly appointments. Consultant has increased her ciclosporin tablets to keep her immunity from moving forward too fast. Her hair is clearly starting to grow back now, much to her pleasure!!!!. Getting out and about more and eating much better, not getting anywhere near as fatigued, Weight slowly going in the right direction. Only issue she has is sleep. Still cannot get a full night without waking at least a couple of times. I believe this is common, thoughts welcome. Continued best wishes to you all on your individual journeys.
    • Nick
  • Hi Nick and good to hear this update. It all sounds very positive and on the whole following a well trodden path by many on here.

    I found the disruption to my sleep patterns lasted a good year. The hospital rhythm knocked my sleep well out of kilter so I was often up a few times at silly o-clock.

    I tried not to stress this and looked at it as having a few sleeps a night but often napping during the day but things just improved the further away from the SCT experience I got.

    It’s my 6th re-birthday tomorrow (Thursday 21st Oct) where has the time gone?

    Keep well.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • A very happy re- birthday for tomorrow Mike, I will raise a glass for you.

  • Happy 6th Re-Birthday to you for tomorrow, Mike, and I hope you and your family will be able to celebrate together even if it’s via zoom

    hugs xxx

    Moomy

  • A very happy 6th Re-Birthday to you for tomorrow, Mike, hope you and the family will be able to celebrate together even if via Zoom

    hugs xxx

    Moomy

  • It’s also my oldest daughters 40th birthday tomorrow so we will celebrate as we do every year, but she and her family will indeed be on Zoom Tada

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • (Strange that my post didn’t post so I tried again and now both of them are there!) 

    Hugs xxx

    Moomy