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TonyH

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TonyH
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  • Gail I'm afraid I have nothing to add on the vaccine, but I would mention that I got shingles about 3 or 4 weeks after I stopped taking aciclovir (15 months post transplant). So if he has any plans to stop aciclovir I'd recommend it! Tony
  • About 15 months post transplant I stopped taking aciclovir and about 4 weeks later I got shingles! It has always been my intention to wait and get the shingles vaccine and in hindsight I wish I had!
  • Steve Congratulations on the 500th post. I'd like to echo Michelle's comment about your work on this forum, you are unfailing in responding to people in a positive and approachable way. I had my transplant for ALL in late 2015 and ever since I joined this forum you've always been someone who had a relatively similar…
  • Chris I hope you're able to celebrate the 5 year anniversary in these unusual times. You're a few months ahead of me, my five year anniversary is in October. I also take the dose of penicillin every day, I assume like me you take it due to functional asplenia from TBI. I was told at a clinic appointment last year that at…
  • 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 a bit and without any intervention they just bounced back. Tony
  • 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 London. I had three rounds of chemo whilst a donor was found and lined up and…
  • 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 and healthy person. However my understanding is that at worst it should be a…
  • 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. Tony
    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 you said Thomas was expected to be there. Whilst I had a lot of earlier…
    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 about a 2 minute walk to the Macmillan Cancer Centre where they give the…
    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 did nothing to help me. I never received photopheresis but I am aware of…
  • 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 of occasions where I experienced symptoms very similar to those I had…
    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%2Bwall&th=1 It was easy to fold up and light to move and I hung it up in whichever room I was…
  • 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 feel better but they said in the case of PH+ that they prefer a 9/10 as there…
  • 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 hospital 2 months post transplant with neutrophils of only 0.02. Like Greg…
  • 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 was any sign of improvement. The good news is that once they did clear up…
  • 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! I'm really sorry to hear about his mouth, it is horrible. I remember coming…
  • 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, although my donor was unrelated. This was in late 2015 when I was 39. My…
  • 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 unduly scared you simply by the way they have communicated it to you. I did…
  • 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 largely due to being at higher risk of skin cancer. I hadn't heard that it…
  • 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 bone marrow transplant towards the end of 2015. I've always said it's been so…