Delay

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Hi Folks

Bit of disappointing news today , Transplant has been delayed due to my recent  bone marrow results. MRD is still positive , transplant team would like it to be lower before they proceed. 
I have to go in to my local hospital for another round of a more severe chemo to hopefully reduce the MRD Pray 

Keeping myself as positive as possible. Another bump in the road as they say Pensive

Thank you all for mind thoughts though x x

  • First some supportive ((hugs))

    The SCT process is very complicated as is our various types of blood cancer so this is not that unusual for this to happen.

    These clinical teams will be looking for ‘everything’ to be as perfect as possible so there are as little ‘things’ that can make the transplant more challenging.

    As you know I have a totally different type of rare skin Non Hodgkin’s Lymphoma that could not be put into remission totally….. so they would often give me extra treatments leading up to both my Allo SCTs to ensure the route was as clear as possible but as my consultant said…… “you will still have a few nails on the road that may burst a tyre but this won’t stop us from keeping going”

    As you know my first Allo SCT did not work and my condition started to grow again but we did not jump straight back in with my second Allo. We reviewed everything, set up a new plan, went back on more demanding treatment…… we were ready to start but we had two family weddings coming up so my team agreed that I should go and we would hold the start gun until after them……

    Keep putting on your positive hat, keep as active as possible to keep your fitness up, ear some good protein foods to get a little weight on…… this will happen ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike

    i have my positive hat on ( odd blip when I question what my Consultant said ) I get it straight in my head, then I think … oh wait a minute, maybe that’s not what he meant and my mind goes into overdrive !!

    Luckily my partner is amazingly good at thinking everything through , he listens intently, whereas I do listen to my Consultant but I am sometimes 10 steps ahead , thinking of next questions so Miss what’s actually being said. 

    I am hoping whatever the next treatment is that it lowers or eradicates this stubborn wee “GENE” and I can get to transplant soon. 

    Thank you for listening and for replying , you’ve had quite a journey yourself and certainly does sound as if it’s been very challenging. Did you say it’s Glasgow you had your transplants ? 

    Thanks again Blush

  • Yes both my Allo SCTs were at the amazing Beatson in Glasgow but the SCT unit has now  been moved to the Queen Elizabeth Hospital across the Clyde.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike 

    I will be under the care of the Queen Elizabeth , Glasgow. 
    Unlike you , I roughly live just over an hour away so not so bad. 

    Have a lovely weekend and I will try and keep you all updated as I go along. 
    Take care Blush

  • Oh you are in very good hands. The team are amazing, from the consultants, nursing team to support staff....but I can't comment about the food although the soup bar at the main entrance is great.

    I only ever went to the QE for clinics post my second Allo SCT as the unit moved not long after I came out of The Beatson and I understand that most of the team are still there.

    The boss Dr P, she has a rather dry personality tand a to the point approach, a touch unnerving for anyone just starting out..... but I managed to break through it and had some very good conversations.

    Dr C.... is great but I challenge you not to be looking at his eye that does not look at youWink

    Dr I had a great sense of humor and would take time to sit and chat.

    Dr McQ was actually very clued up on my type of rare NHL so I learned a lot from him.

    One of the nurses actually originally came from Inverness and was going on maternity leave the day I got home after my first Allo SCT....... 16 months later when I went back for my second Allo SCT she was the first person i meet arriving at the ward, so we sat and caught up, asked about her little on and found out that my last name was her inspiration for her child's first name Heart eyes

    Let's look for you to get this next treatment done and get into the SCT process.

    Always around to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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