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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Clare, I hope things are progressing well and you're coping with the tummy trouble OK. For me it was only really bad for a short while and did improve, but it was some time before things got better and it was quite some time before my appetite improved. If you can manage to eat something it will help and I found the…
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Hi Gail, Like Nichola I'm one of the community champions and echo her sentiments about being diagnosed which comes as a shock to us all. I guess after a period of no sign of illness after the NHL you were feeling good, so I'm not surprised you feel scared. Your symptoms of the AML and the speed at which you were put into…
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Hi James, That's fantastic that you've made contact with your donor and got on so well. If you think about it you are now partly him anyway! I'm sure it must be reassuring to our donors that they hear we are doing well and that their potential to save our lives has been successful. I'm sure you will meet in due course and…
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Hi James, Thats a fantastic insight and so good to hear from someone who is well so long after transplant, and your 3rd cousin who is even further post transplant. I also had ALL (4 years ago) so it is really reassuring to hear that we can survive post transplant for so long and there is no reason why we shouldn't live a…
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Hi there, This is a good question and it's one I asked my transplant team myself, as a dog owner. There was no time during my treatment that I was ever asked to avoid contact with my dog and in fcat he was great company during my recovery and helped me get some fitness back by walking him daily and building up my strength.…
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Hi there and welcome to the forum, I'm one of the community champions and here to support you along with the other patients. I had a transplant over 4 years ago for Leukaemia so am an old hand at this by now. You'll find lots of us here that have had transplants or are at various stages of transplant for a variety of…
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Hi Mandy, for all of us it does take quite a bit of time to regain our fitness, though those that were fitter and more active beforehand might find it easier to get fit again due to being more disciplined in being active, but I would urge caution in making sure that your brother doesn't try to overdo it. There's a good…
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Hi Mandy, I think reduction of Ciclosporine is a fine balancing act but they do try to wean you off it as soon as they can. I can't remember now how quickly mine reduced but I seem to recall that it reduced fairly quickly to start with but then slowed down, particularly as my GvHD developed, which delayed me coming off…
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Hi, The link I found was on the Leukaemia and Lymphoma Society page and explains how the process works, possible side effects and indication of promising results. It sounds like it's a new process so as Hayley says it's unlikely someone here will have had any direct experience of it so far.…
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Hi there, I'm really sorry to hear your news which I can imagine is absolutely devastating. I guess you're still reeling from the shock but the important thing is that the medical team appear to have a plan and hopefully it will be successful. I don't have any experience of Blinotumumab or CAR-TCELL therapy but I know…
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Hi Jane, I just wanted to echo what Sue has said and wish you well. As you say it may be just a blip due to an infection and hopefully nothing more severe than that. I think we maybe get too hung up on our blood tests and it is possibly normal for dips in our system whether we have gone through a transplant or not. I…
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Hi Mandy, Now that it's been mentioned I think the main risk was whilst I was on Ciclosporine which made my skin more sensitive to sunlight. Now that I've been off it a while I'm less cautious out in the sun, though I do take precautions if I'm going to be in strong sunlight for any length of time. Steve
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Hi Mandy, Thanks for the update. Its great that you brother is able to get up and about and I assume you are being cautious about what he is exposed to. I recall being advised to avoid too much sun after my transplant as I think the treatment has an effect that makes patients skin more sensitive. I was advised to use a…
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Hi Kate, Thanks for the update and whilst I know it is daunting it will hopefully stop you relapsing again and be a permanent cure. We will all be here to support you along the way and the one thing you will find from this forum is that you are not alone and there are lots of people going through the same situation and…
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Hi Kate, It's good that your latest biopsy shows that you are clear of the Leukaemia. I had lots of lumbar punctures myself as part of my chemotherapy and for a year after my transplant to make sure my central nervous system was clear, although there were never actually any signs of the Leukaemia getting that far. Greg has…
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Hi Kate and welcome to the forum, I'm one of the online community champions and a former patient myself, having had a transplant just over 4 years ago for ALL. I must admit I haven't come across APML before but having done a little research I see it is variation of AML and also see that SCT is a possible route to those…
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Hi Jane and welcome to the forum. I'm one of the online community champions. Your question is one that we all ask ourselves about our respective illnesses and we all have that niggling thought about the illness coming back as I suppose there is always the risk of a relapse. I'm now over 4 years post transplant and I guess…
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Hi there and welcome to the forum. I'm one of the online community champions here. I imagine your sons diagnosis was a big shock and I hope you are all coping ok. I know we have a few members on the forum who have children of various ages that have gone through transplants. They may have had these for different reasons to…
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Hi Mandy, I seem to remember suffering headaches from time to time. Part of my treatment was having intrathecal chemotherapy, which was injected into my spinal cord. That usually gave me a headache, largely because it was injected into my central nervous system. I also had headaches sometime when I had transfusions. He's…
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Wow, that must have been a shock Mandy, but I hope he's ok now. The transplant itself is surprisingly simple and no more dramatic than having a transfusion. Considering how life changing it is it's so straightforward. We all know what he is going through and the path he has yet to follow but so many of us here are…
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Hi Becky, I know there are a few patients on here who have had DLI treatments so hopefully some of them will be able to give you an insight from a patients perspective. There are a few threads that have mentioned to-ups before. How are you feeling in yourself? Whilst your chimerism is low I wondered whether your blood is…
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Hi Lou, welcome to the forum. I had ALL but I don't think it was PH+ and didn't have TBI at all. I was 46 when I was diagnosed and ended up having an unmatched donor transplant back in January 2013 after 3 months of chemotherapy under the UKALL14 trial. I was in remission after the first months induction therapy but the…
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Hi Tom, it's good to hear from you and that's good news. I hope the rash is getting more comfortable. The walking football will be good for you to build your fitness and stamina up and keep your fitness going without being too strenuous. Am I right in thinking you're just over a year post-transplant? It's good to be off…
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Hi Jo, I'm afraid I don't have any experience of this particular condition, but I would have thought in terms of finding a match the chromosome might not be a factor as there will be other tags that the match will look for so it shouldn't be any more difficult than finding a match for those without it. Hopefully someone…
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Hi Mandy and welcome to the forum. I'm one of the online community champions and was also at the education day on Friday. It was good to meet you and your mum and I hope you found the day beneficial. Even as an 'old hand' at all of this there was still new things that I learned so it was well worth attending. I know we…
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Hi Tracey, I'm so sorry to hear this news. It's something we all fear as it is always a risk and even later in the transplant journey as I am I live every day with a niggling concern that my Leukaemia could come back and I'll have to go through more treatment. I hope Johns medical team can get on top of this quickly and…
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Hi Aileen, I'm now over 4 years post transplant and it sometimes feels like it takes a little longer than it used to getting over minor bugs. You're just over a year so hopefully as you get further on it will improve. When I pick up a cough or cold it does seem to knock a bit more out of me than it used to. The main thing…
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Hi Alma, Welcome to the forum, and in terms of help and support you will find lots of it here for a start. I'm one of the community forum champions and have gone through a transplant myself four years ago for ALL so I can give you a patients perspective on help and support. There is some good advice on the Anthony Nolan…
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Hi Harshman, Good advice above from Greg and Sue and I echo that advice. Infection is just something that you have to be cautious and sensible about. It's a case of making sure you don't expose yourself to unnecessary risk, so avoid being around people with coughs or colds and other nasties whilst your immune system is…
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I'm hoping I can make it for the morning at least as I have a reunion in Leeds that night so will need to travel up North in the afternoon. It would be good to see a few faces from here and have a catch up in person, and of course to see the Anthony Nolan team. I'll check and let Maddy know. For anyone that hasn't been to…