Does anyone else have the P53 Mutation or had a Cord blood transplant?

Oh @Corrina I think hospitals have to be so, so careful, especially when patients with very low immunity are involved, but it must be so tough for patients and relatives.
A 4 hr round trip for your husband and then for you both to know that he is so so close, but so far away from each other.
I hope you can at least keep in touch virtually and you will have all of us on this forum here for you too. So of course will you @Yorkshire1962.
Sending you both lots of love.

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Hi everyone, well the big day has come and gone, I’ve had my bonemarrow (stem cell) transplant today, still not sure what to call it :blush:. I had 5 days I’d chemo prior to the transplant, where I was OK until the penultimate day when they introduced me to ATG (Rabbit), which did make me feel a bit grotty, usual chemo symptoms, but only lasted for 36 hours. I feel good after my transplant no reaction so but recognise that it’s very very early yet. I was pretty amazed the actual transplant process was delivered by IV and last about 45 minutes. It really is amazing how something so vital can be delivered so quickly. A quick shout out to @Corrina as I know you are in hospital now awaiting your transplant, but if your transplant goes as easy as mine and I sincerely hope it does, then I’m sure you will be fine, fingers crossed :crossed_fingers: :crossed_fingers: for you. I’ll keep you all posted as to how things are going, but it’s so encouraging to know that so many people are supporting me, including people on this forum, so thank you it really does mean a lot to me. Best wishes Nick x

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Hi @Yorkshire1962 its sounds as if its all going well. Its such good support on here. Keep us posted.

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Wow, @Yorkshire1962 I was not expecting to hear from you today.
Good news and yes, isn’t it amazing how something so vital can be delivered so quickly.
Look after yourself and please keep posting when you can.
Also thinking of you @Corrina

So glad it all went ok. Keep us updated and look after yourself :relaxed:

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Congrats Nick and glad to hear it went well.
And also that the conditioning chemo was manageable…

Mine are in too…had a moment of total panic when one of the cartridges paperwork didn’t match! There was lots room for error in transferring them from fridge/bath/snipping off lids and syringing etc…but all went went in the end.

My conditioning chemo and radiation was ok too…nothing adverse yet!

Wishing you healing and strength.
Hope it continues to go well. I know there will be many hairy days ahead but if we stay focused we can get through them.

All the best Cx

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Hi @Corrina - I hope your treatment is going well. I had a double cord blood transplant for Acute Myeloid Leukaemia just over 5 years ago. Sending love and strength to you - if you have any questions about it am happy to share xx

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How are you doing at the moment @samsym ?

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Hi and thanks for joining the thread. Can I ask if you remember how many days it took to engraft? Thanks x

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Hi @samsym. Good to hear from you. How have you been keeping?

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Hi @Corrina I can fully understand your worry after the paperwork confusion, but glad the transplant went well in the end. I’m going through the mill a bit since my transplant. The anti rejection medication (ciclosporin) is taking its toll on me. I’m now home recovering which is fantastic, but I get very tired with even the smallest of tasks, so just trying to rest as much as I can. I still feel positive and I’m sure it’s “short term pain for long term gain” and I’m so glad that you are doing well. All the best Nick x

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Hi @Yorkshire1962 I am sorry to hear that you are going through the mill.
From what I have read on here on the ‘Awaiting or considering or had a stem cell transplant, a place to share here’ it is not uncommon for the smallest of tasks to really, really tire and wipe you out.
As the ((annoying sometimes !!!) sayings go ‘time is a great healer’ and ‘baby steps’ and I would say ‘be ever so kind to yourself’, just think what you and your body have gone through medically, emotionally, physically and practically.

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Oh Wow Nick you are home! That is great news but sorry to hear you are going through the mill. Yes the ciclosporin is awful isn’t it. I am still in hospital I have only had one infection from my hickman and now have a new PICC, I have had 9 of these lines put in and I find it quite traumatic. My counts are bouncing around quite a lot still but I hope to be home within a couple of weeks. Great to hear you are remaining positive. I am not always able to keep my head together but trying… Stay in touch and rest up Cx

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All good thank you. Some ongoing health issues but minor in comparison to the alternative.

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For me, 22 days. How are you keeping?

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PS I wanted to apologise for the delay - I am not sure I am notified of when someone is tagging me in - need to get used to the site a bit more :slight_smile:

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Hi @Corrina I am not surprised you you are not always able to keep your head together, you are human. I know what you mean today so perhaps I am human too !!!
Look after yourself and be kind to yourself

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Hi Corrina I hope you’re levels settle down soon and you can get home to family as it really does mean so much and will give you a boost. I sincerely wish you well. Thank you @Erica for your reply and you’re absolutely right, I try to have a short walk everyday only for 10 or 15 minutes but its enough, the slightest of tasks leaves me exhausted, but hopefully this will get easier in the coming weeks, as i recover from the transplant. I wish you all the best, Nick x

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Hi Nick and everyone! great to hear you are ok Nick. To my complete surprise I was sent home on Wednesday, day +21! Yes being home is so restorative, I have two young teen boys who need a bit of mothering so I have to pace my energy levels. The fatigue was really shocking once I had some context, like walking up the stairs or making breakfast leaving me completely shattered. I find that just walking around the house and helping the kids seems like a workout! My husband is very hands on which helps too. I am able to drive so I feel like I have some independence and I get everything I need delivered. I was back in London hospital yesterday which was a long day and they sent a taxi for me so I didn’t have to navigate the trains as it is a 4 hour round trip. I am staying in bed today to rest after yesterday. I wish you all the very best for your recovery Nick and really hoping all will remain well for you. C x

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Hi @Corrina you are doing brilliantly and whilst getting home is so restorative, it comes with it’s challenges.
Do a manageable task and then rest I believe is the way to go.
All hospital visits I think are exhausting, however well you are, so a day in bed is definitely in order.
Also the biggie for me is to ask for help and accept it !!!
Look after yourselves, be kind to yourselves and spoil yourselves !!
I

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