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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Keep going Jane, you're heading in the right direction. Best wishes, Steve
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Hi Kitty, It sounds like he's making small improvements which is a good thing. If you can reduce or eliminate some of the effects it probably makes the others a little easier to bear. Fingers crossed the infliximab does the trick and deals with the gut problems which should help him feel better. I know it's a worrying time…
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Hi Again, it's great that you're getting back to work and even if you are working from home you'll find that keeping busy will stop you going stir crazy. From my own experience I know it helped me although my employer seemed to be careful about not burdening me too much. Having the home office separate from the house also…
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Hi Billie, That's a great blog, I read it when the link was posted on Facebook. It give a real insight into relationships throughout the transplant process and so much of what Jo and Simon said is familiar to me, not only through the transplant process but also IVF as that is how we arrived at our twin sons 16 years ago,…
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Hi there and welcome to the forum. I'm one of the community champions here and was treated for ALL myself almost 5 years ago. I know you realise it, but I hate to say that it is normal to have sickness and nausea and diarrhoea for a week or two after the transplant. I understand it is one of the chemotherapy treatments…
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Hi there, Your readmission to hospital within days of going home after your transplant echoes mine. I was discharged 4 weeks after my transplant on the Friday, developed an infection over the weekend and was back in on the Monday! It was my lowest point in the whole of my treatment as I found it a real setback and ended up…
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Hi Jane, Thanks for the update. It sounds like a waiting game till your counts start to climb a bit. I guess the GCSF injections are directed at getting your cells going. It's good that you're staying positive and I hope you can stay that way with our help. Please keep us posted, we're here for you and all rooting for you.…
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Hi Kitty, That's great advice from Tony and Greg as patients who've gone through this and from Hayley on the clinical side, so there's not much I can add to that. I haven't experienced gut GvHD and can imagine how debilitating it is, but I have had acute skin GvHD which took some time to get over, but it can be treated.…
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I thought that was you when I saw it. Congratulations! Many more milestones to be celebrated yet Sue. All the best, Steve
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Hi Jane, I'm really sorry to hear that you've relapsed and that you may bey facing a second transplant. Sadly it's something we all face and it does happen from time to time. I'm one of the community champions here and have been around a while so I know that this has been raised before with other patients in a similar…
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Hi Rachel, I think at 18 months post transplant and having relapsed once you possibly still have a sub-conscious fear that your illness may come back and that perhaps unsettles your mind? We're all affected and react in different ways, possibly as a result of how well we coped during the treatment and transplant, and how…
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Hi Alison, I'm Steve and I'm one of the community champions on the forum and I had ECP treatment for the same thing. I also had acute skin GvHD which showed up about 2-3 months after my transplant. I had dry flaky skin all over my body which was really itchy and uncomfortable and a red rash around my neck and on my hands…
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Jane, Thanks for the update, I'm glad you find good support here however small under the circumstances. It's easy for me to say try and stay positive in the hope of getting back into remission which it sounds like there is a chance of and I'm fairly sure you are clinging on to that possibility. I know the prospect of a…
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Thanks for these posts Tony, they are really useful to patients at earlier stages than us and contain some really good advice. I agree with you that the soft foods, nutritional milk shakes and yoghurts were good and at one time were probably my staple diet, particularly when I got the sore mouth. I really struggled with…
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Hi there, no my transplant was for ALL. I did a search on the forum for DLI and there is a thread from someone who is exxactly in your dads situation and had DLI after a relapse with responses from a couple more people in the same situation, so it shows you are not alone.…
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Hi there and welcome to the forum, I'm one of the community champions here and a transplant patient myself. I can imagine how devastating this news is, particularly if your dad has been doing so well and was probably more or less recovered from his transplant at three and a half years. There have been quite a few posts…
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Hi Kitty, I think infections and temperatures are probably quite normal and it was certainly something that happened to me early during transplant. I was also put on antibiotics and it was soon under control. The monitoring that your partner will be having, with regular checks on his temperature and bloods will pick up any…
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Oh Jane, I'm, so sorry to hear this. It's one of the worries we all face but it's hard on all of us to hear that somebody's illness has come back. I can't imagine how you're feeling at the moment but I'm sure you will be getting lost of advice and support from your medical team to help you choose the best option, but it…
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Hi Kitty, I'm one of the community champions here. There's not much I can add to what Tony has already said and I had similar experiences with the sore mouth, which was unbearable for a time but did get better so please tell him to hang in there and it will get better and doesn't last long. I had a couple of other setbacks…
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Hi Mandy, that's great news and he seems to have made fantastic progress to be off Cyclosporin already. I would have thought if any problems were going to show up with such as GvHD they would have appeared as the Cyclosporin was reduced, which is what happened for me so they stopped reducing my dose and I didn't come off…
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Hi there and welcome to the forum, I'm one of the community champions here. I was diagnosed with ALL and having a sister she went through blood tests to see if she was a match as a transplant was always the likely outcome of my treatment. She had a blood test early in my treatment and in my case the results came back…
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Hi there, I'm one of the community champions here so a transplant patient myself and can imagine the concern this gives you and your husband. From what I understand there are various ways that transplants can be accomplished now even if a complete match can't be found so whilst I'm sure the search will continue there may…
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Hi Nichola, I'm a Lobster and always have been as I'm fair haired and fair skinned. I turn varying shades of pink to red if I'm out in the sun for any length of time so the high factor sun creams are used fairly extensively particularly after my transplant and after the prolonged complications with skin GvHD. That said I…
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Hi Greg, You're right to raise this, as what we have all been through and those out there that are still in the process is probably one of the biggest challenges we will face in our lifetimes, and we all cope in different ways, some better than others. Personally I don't think I have any long terms mental issues but then…
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Stay with the positive vibes. I know it's daunting but you can and will get through this as some many of us here have done, and you should be no different. It's good that you now have a date and are clearer on what is happening, so now you can plan around your transplant and prepare yourself. Best wishes, Steve
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Hi Mandy, Wow those 80 days seem to have gone quickly. It doesn't seem like 5 minutes since we met at the Patient and Families day in Birmingham and at that stage your brother was about to start his transplant. I'm really pleased to hear he is doing well and it's a good sign that his medical team are able to reduce his…
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Thanks for the update Jane, it sounds like you are doing well and hopefully your platelets will pick up again and your chimerism will reach 100%. I seem to remember having transfusions and platelets for some time after my transplant so hopefully yours is just your new system bedding in. Please keep us updated with your…
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Hi, As Greg says we are all unique and react to our transplants in different ways. Some will find it straightforward and recover quickly whilst others will struggle and have difficulties. Hopefully things will continue to go smoothly and you will recover without any complications, but don't get too hung up on any setbacks…
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Hi Rachel, and welcome to the community champions team from an old hand. As I'm sure you've seen the forum is a great place to be and it's so rewarding as a champion to be able to support others get through what we have. You will have some things in common with me and the other champions and some things that we have not…
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Hi there, Just to add to what Hayley and Greg have said I seem to remember having my tests about a month before my transplant. I had ultrasound on my heart to check that my heart valves were functioning well and to measure them, and was also due to have a lung function test, though that was never actually arranged. I seem…