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)

  • Hi Nick, a great update and you do know that she will now be looking for two birthday’s every year including two gifts.

    Infections are unfortunately normal post SCT but it took a good year for me to have my first one - this is how different each journey can be.

    Its been a long journey for you both so let’s look for a lid to be put in this and you can both move on with life.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • A good step forward, Nick and I really hope she does well now that the road ahead has become clearer.

    will be thinking of you both

    hugs xxx

    Moomy

  • Moomy/Mike

    Thanks for your kind words, will keep you updated.

    Mike, we have quite a bit of bubbly to get through also as we've kept this back from our wedding anniversaries which we haven't celebrated as each year my wife's been in Hospital since our wedding and diagnosis on each date.

    Looking forward to popping and sharing  those when this journey allows!!!!

  • Update

    Day +4

    I've now returned home after spending a precious 6 days with my wife in the Ambulatory Care Hotel at uclh.

    Wife has now moved into the main Hospital as she feels safer with docs etc close by 24/7. It also makes me feel so much more comfortable.

    She has done well, a little fatigued and gets short of breath after a short walk.

    No temp spikes as yet, I'm sure this next week or so will get tougher until they start to bring her levels back. I guess they will reduce the ciclosporin over this time to allow her own cells to slowly be introduced to her sisters.

  • The preference is for her levels to be left to climb by themselves.  For both my Allo’s my Cyclosporin levels were not reviewed until about day +100.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike

    That makes sence tbh.

    We're told that she will be on ciclosporin via drip whilst in hospital and when discharged changed to orally for around 3 months.

    Do they lower the dose over this time or just keep it the same. I guess they must lower it to allow her own cells to hopefully graft. I'm really  aware of the process from here tbh.

  • Yes the donor cells need to populate her bonemarrow then after about 100 days the real battle starts.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Yes I was on the drip in the unit then onto oral meds…… they are rather disgusting so be prepared for this to be a challenge.

    They will do the first of a number of Chimerism genetic blood tests about day 100 and most likely a BMB. These are used to monitor the success of SCT by evaluating the ratio of donor and recipient DNA in her blood looking for the donor cells to be higher than her cells.

    They will also start look to start reducing the anti-rejection drugs and let her old self fight with her all new self fight for her immune system looking for the Donour to win. At this point in time she will be open to GvHD as her old self will try to kill off her new cells.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Day +6

    All going well, still no spikes and nausea easing.

    Mike, I know you said they normally like her own cells to come back at their own speed, but today they have started injections  of G-CFS which seems a bit early to me,as she's still on Cyclosporin. I can't get my head round why they would try and boost her white cells if they want them to form naturally. I know they don't want her to stay nuetropeanic for too long but it does seem odd to speed thing up.

    Obvious they know what's best, maybe things are going better than planned, but it is very very early in my opinion!!!