Sct

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Hi guys

I've completed a round of RICE and Matrix I'm still in hospital as I picked up a fever on day I was due to be discharged. The car was packed and about to leave room when I got up I basically collapsed fortunately not on the floor. They kept me in on antibiotics but not spiked a temperature since that day. I feel.like I've been through a lot in few short weeks I was wondered how other have coped mentally getting through?

My family are great I have lot of support and either.my Hubbie or mum stay with me in hospital. I feel like I've  hit a bit of a wall and see myself feeling I'm missing out whilst here and others lives go on. The treatment been tough probably bit more than expected. Can't believe how much I have to drink to flush out kidneys.

The staff at Marsden are the most caring I've met and I'm so grateful for this. 

I will have a pet scan soon 

Thanks

Alice x

  • Hi Lyn

    How you doing? I'm about to start pre chemo to CART T next week with car t infusion on 9th December hopefully out just before the hoildays but not sure. Did you have a bone marrow biopsy prior to starting cart t? They have asked me to do one. 

    Take care

    Alice x

    Alice x
  • Hi Alice,

    was doing fine till pneumonia reared it’s ugly head , so a bit down at the moment. Had to cancel my last PET Scan , have to wait till they can fit me in for another one to see if things are still all good on the CAR-T front . No I didn’t have a bone marrow biopsy before  CAR-T but all hospitals are different. 

    Good things are progressing apace for you .

    Love Lyn x

  • Hi Lyn

    Aww sorry to hear hope your feeling better really soon. Thank you accommodation is sorted and starting very soon maybe Christmas in hospital im quite anxious about it all but hopefully its the last step. I don't know if your on FB group ive found some very positive experiences of remission of cart -t including one of the friends ive made, when ive felt down ive found it really positive to read.  hold on to your positivity your a very strong and brave lady.

    Love Alice x

    Alice x
  • Hi Lyn

    I hope your doing okay..?I had my cart T cells put back on Monday. I’m on day 3 and so far not much has happened apart from neutropenia shakes and temperature day it happened and bit of dodgy stomach. Just a quick update

    take care

    alice x

    Alice x
  • Hi Lyn 

    I hope your doing okay. I was discharged from the hospital yesterday so now resting in London. I think.the cart-t is working but have my first pet in Jan. Hope you have a nice Christmas and New year 

    Alice x

    Alice x
  • ((Hugs)) Alice xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thinking of you Alice and hoping all goes well 

    hugs xxx

    Moomy