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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi Christine, Welcome to the forum and I’m glad to hear that you’ve found the threads regarding relapse and subsequent treatment useful. When something like that happens it must be useful to know that it is something that happens to others, possibly more than we realise and that there is a well established course of…
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Hi Billie, Having had acute skin GvHD myself and gone through the topical creams, steroids and ECP treatment these are really clearly explained in this article so I’m sure it will be helpful to those who might be experiencing the same. For me GvHD was an irritable inconvenience, but it did delay my ability to get off…
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Hi Pam, That sounds like really good progress. The 100% donor is something that is referred to as ‘chimerism’ and it’s basically a measure of how much the transplanted cells have replaced your husbands existing cells. If you have a 100% chimerism it means the transplant has had a full effect and your husbands immune system…
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I’m trying to think back now as I seem to remember a similar situation in the early days after my transplant. If I remember right the brother of one of my sons friends had chicken pox and we were concerned that it could get back to me. I remember asking my medical team at the time and they did say that if I’d already had…
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Hi Alison, that’s good news that you’ve found the cause and when he gets over his cold he will hopefully soon pick up. I don’t remember having clips to hold my Hickman line in, I’m sure it was held with a couple of stitches. I also had an infection in my line which meant it was taken out earlier than I think the hospital…
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Mandy, There’s a thread with three other patients going through the same treatment. It’s a while since there’s been an update but it may help to know that your brother isn’t the only one that this has happened to. I see that Rob has been on the forum most recently in mid November so perhaps a post on there might get a…
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Oh Mandy, I’m sorry to hear this. It’s clearly not the news you’d hoped for but there are others who’ve had similar experiences here and have gone down this treatment route. I hope the medical team can get him back into remission quickly and without complications and get things restarted with a DLI. I know it will be hard…
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Hi Alison, As Greg says its possible that it may just be a blip which I guess could be related to his cough and cold which has upset the balance a little and hopefully things will pick back up again when that clears. There's a similar discussion going on in Mandy's 'new to the forum' thread at the moment where her brother…
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Hi there Mandy, Thanks for the update and I'm pleased to hear that your brother is doing well in his recovery and I hope that his drop in platelets is a minor blip. I often think we perhaps get too hung up on counts because we're monitored so often, and I wonder if you monitored a healthy person without the complications…
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Hi Aimee, That's fantastic news and hopefully you guys can have a lot better Christmas this year than you did last. It's amazing how things can progress within a year if all things go well and I'm so pleased to hear that Matthew is doing well. If you follow the Anthony Nolan blogs at all, there is a recent one which was…
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Hi Pam, I know it is probably hard to see your husband as he is at the moment with the effects of the transplant in his early days, but it sounds like the sore mouth and throat and bad stomach, probably combined with sickness and diarrhoea is quite normal and should improve soon. He’s probably struggling to eat too which…
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Thank you Hayley. I think it’s the direct experience of the patients on here combined with the knowledge of you and the Anthony Nolan team here that makes this forum what it is. I’m just glad I’m able to help people in any way I can now that my recovery is complete and hopefully I can help get others to where I am now. I…
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Hi Pam, I'm so sorry to hear this and I can't imagine how your husband is feeling to think about his Mum on top of everything that he is going through at the moment. I remember being snappy at that time myself but the added concern for his mum and frustration at not being able to see her must be tearing him apart. I'm sure…
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Hi Sue, Thanks very much for your kind words. It was a privilege to be part of the awards ceremony last week and be amongst so many people who do their bit to support Anthony Nolan in various ways. There were donors, patients, supporters, fundraisers, donor recruiters, journalists and MPs, all of whom do their bit to raise…
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Hi Gill, welcome and thank you for posting on the forum. I'm one of the online forum patient champions and was treated myself for ALL five years ago. I haven't heard of cataracts in relation to transplant before now and I think it's the first time I've heard it mentioned on the forum. I don't recall it being mentioned as a…
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Hi Pam. All of us are slightly different so we react in different ways to our transplants and recover differently too, but there are some common themes I guess. In the early days of your husbands transplant he is probably still feeling the full effect of the pre-transplant chemotherapy and I suspect is going through a…
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Hi Rusty, that does sound very scary and I can imagine how worried you are. The GvHD rash is something I have experienced and it's good that it's gone through just steroids and creams. It took nearly two years of photophoresis treatment to get rid of mine. I haven't experienced seizures, though I went through a spell of…
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Hi Jackie and welcome to the forum. I'm glad Greg has been able to post such a useful response which will hopefully help your husband decide on a course of action. It's reassuring that Greg has gone through what is now being suggested for your husband and has come out the other side. I'm sure there are others here who have…
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Hi Alison, that's good news and I hope that your hubby doesn't suffer any reactions this time and that the jab gives him the protection to avoid flu over the winter. Best wishes, Steve
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Hi Philip and welcome to the forum. I'm one of the community champions here and a transplant patient myself for ALL almost 5 years ago. Apart from the Anthony Nolan team here we are all either patients ourselves or relatives of patients going through transplants. The beauty of that is that we all understand what you are…
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Hi Jane, Thanks for the update. I'm glad the chemo is going relatively well and you're coping well apart from being tender around the injections. Hopefully the benefits will outweigh the discomfort and you get the result you're looking for by getting you back into remission. Fingers crossed for some good news after…
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Hi Greg, Thanks for that, it does seem to fit with my theory that stress and fatigue in our lives possibly gives an opportunity for cancer to strike though most of will never know. I think like you it makes you look at life and avoid those situations that might give rise to heightened levels of stress. I'm all for an easy…
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Hi there, I guess the decision to have the vaccination is dependent on the reaction that your husband has had to it previously. The risk may be more not to have the vaccination as a heavy dose of flu can be very hard on us post transplant. It generally takes longer for me to get over sniffles, coughs and colds than it used…
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Hi all, It's a while since I wrote this post on the forum and wondered, now that we have more members, whether anyone had anything new to add regarding how they felt or what they were exposed to prior to their diagnosis. There seems to be a them of people being tired or run down at the time, and to me it seems this gives…
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Hi there, and welcome to the forum. There’s nothing I can add that Hayley hasn’t said above, but as an ex ALL patient myself I’m rooting for your son and hope that the cough goes away in time for his transplant to go ahead and everything goes smoothly. I’m sure his medical team will be monitoring him closely and will react…
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Thanks for posting this Sue, that's very encouraging. Long term survival after transplant is something I think we all must think about. To think that someone who had a transplant so many years ago, without the advances in techniques since then went on to live a full and varied life, despite GvHD is quite inspirational. I…
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Hi there Rusty and welcome to the forum. I'm one of the online community champions here and had a transplant myself almost five years ago. I'm sorry to hear your husband is having problems and can imagine how frustrating it is for him. I guess at 76 days post transplant he is probably still quite weak and if he's like I…
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Hi Joanna, I think tiredness and fatigue is something that takes some getting used to and affects us all differently. Some of us may recover to near where we were before getting ill and others may struggle. I guess its just the way our bodies react to what they've been through and how well they recover. I'm sure all of us…
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Hi there, I think the replies you've had already probably give you some reassurance that this is something that happens possibly more than we realise. I've seen quite a few posts on here recently regarding stem cell top ups and second transplants and from what I've read it does seem a relatively straightforward process and…
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Rob, many thanks for your post which is just the sort of thing this forum is for and I'm sure is helpful to Jane. So often someone has a problem that they may think is only affecting them and it's so good for them to hear that the problem they face has affected someone else. Talking about our experiences and the things…