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TonyH

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TonyH
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  • Clearly every situation is different, but I was admitted to hospital about 2 months post transplant with an infection and my counts had plummeted. The doctors ordered a bone marrow biopsy for the next day, but by the next morning they'd gone back up…
  • Jhon I was 39 when I was diagnosed with pre-B ALL and was positive for something called the Philadelphia chromosome, which is high risk. I was therefore advised to have a stem cell transplant. I was diagnosed in June 2015 and treated at UCH in Lond…
  • Dannii Firstly, what a fantastic thing you’re doing for your brother, I wish him all the best with his treatment. My only experience of GCSF was after my own transplant to stimulate the new cells so I’m afraid I haven’t experienced them as a fit an…
  • Marie No problem at all. That's great news that things are moving forward. I wish you and your family all the best for the process. If there's anything else, even if it's just advice on that area of London and what's around then please let me know. …
    in Marie Comment by TonyH October 2018
  • Interestingly there were some people staying at The Cotton Rooms and having their transplants effectively as day patients through ambulatory care. These seemed to be older patients who were having less intensive treatment, so I was surprised when yo…
    in Marie Comment by TonyH September 2018
  • Marie I had all of my treatment and transplant at UCL and can't speak highly enough of it. I was in the ambulatory care section for much of that and the accommodation, The Cotton Rooms. The accommodation is great, it's to a very high standard. It's…
    in Marie Comment by TonyH September 2018
  • Krista I went back into hospital on about day 32 with gut GVHD and was there for about 25 days. I send all my best wishes to both of you as my wife and I found that period the hardest part of all of my treatment. Like your boyfriend the steroids di…
  • Kitty It's only natural to worry and we all understand that it doesn't matter how much you try and rationalise what's happening, it will always be at the back of your mind. I had my transplant for ALL towards the end of 2015 and have had a couple…
    in Worried Comment by TonyH May 2018
  • In terms of photos rather than put them on a board I had loads of photos in something like this: https://www.amazon.co.uk/Picture-Pocket-502296312040-Pockets/dp/B01EWV5ZUW/ref=sr_1_18?ie=UTF8&qid=1520426649&sr=8-18&keywords=photo+wall&…
  • I was 38 when I was diagnosed with Philadelphia positive ALL in June 2015. Exactly like your wife I am white European and likewise there were no 10/10 matches, but there were a number of 9/10. I'm sure the doctors were just saying it to make me fee…
  • Just to echo the comments from Greg and Steve, counts can fluctuate a lot in the early days. In my case they rose as expected post transplant but then after an infection / spell of GvHD they fell and despite being back on GCSF I was readmitted to ho…
  • Kitty I was about 5 weeks post transplant when I was re-admitted to hospital with exactly those symptoms. The word "horrific" certainly resonates with me! I was in hospital for just over 3 weeks and had those symptoms for about 2 weeks before there…
  • Kitty I'm sorry, it's been a few days since I was able to get to a computer. It's funny what you've said about your partner and his concern with his hair not falling out, I was the same, I was concerned I wasn't getting the right dose of medicines!…
  • Kitty You're right that everyone's experiences are different and it's hard to convey in a few words here much that's useful. Like your partner I had ALL and also what one nurse described as the "full fat" transplant with 8 sessions of TBI and chemo…
  • I had a transplant from a donor in Germany who was a 9/10 match! I was never told there was a problem finding a match for me and the only message they ever gave was one of "good news we've found you a donor." Therefore it's possible that they have u…
  • Nichola Yes, my skin is definitely much more sensitive to sun since treatment. I had my transplant, including TBI, in late 2015 and was likewise told to be more careful in the sun, although I thought as well as the skin sensitivity point this was l…
  • Fiona Obviously everyone's experiences are so personal but my wife and I can really empathise with your situation. I was 38 and otherwise healthy and active when I was diagnosed with ALL in June 2015. My children at the time were 6 and 4. I had a b…