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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Oh Christine I’m so sorry to hear of your sad news about Bob. We’ve all followed your updates with hope that the treatments would work and a cure could be possible. I can’t begin to imagine how you must all feel with your loss. It’s a sad reminder that these illnesses can be so cruel and that we must continue to support…
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Hi there, I'm really sorry to hear that your mum has relapsed and is now facing further treatment. I can imagine how big a blow it is so long after transplant and particularly when she is feeling so well. I don't have direct experience of relapse or second transplants myself, but as an online community champion here on the…
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Hi Lizzie, Yours sounds very similar to my experience, and I too had skin GvHD which I think was the cause. When my hair came back at first it seemed darker and thicker, but then a few months post transplant I started to notice it was being lost again and going thinner. I also put it down the the GvHD which for me was…
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Hi there, Welcome to the forum, I'm one of the online community champions and a transplant patient myself for ALL in January 2013. It's actually surprising how quickly you can come home if things are going well. I was let home only three weeks after my transplant as my counts were starting to climb. I guess you've had 6-8…
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Hi Rob, I've heard that GvHD can affect bone joints too somewhere but don't know anyone that's experienced it. For some reason I expect GvHD to show symptoms earlier than the stage that you're at now but I could be wrong and I guess that's why we get continual monitoring and late effects tests etc. I'm sure all that our…
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Hi Lyndsaylou, I'm sorry to hear that your husband is having trouble with GvHD of the mouth. It's not something I suffered from but I did have mouth ulcers due to a fungal infection a few weeks after my transplant which were incredibly sore so I can fully sympathise with what he's going through. My mouth ulcers only lasted…
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Hi there, I wrote a letter to my donor a couple of months after my transplant to thank them for their donation and to let them know I was doing OK. I found out later that the letter hadn't been passed on by the hospital via Anthony Nolan so I sent a second letter via Anthony Nolan. I never got a reply, which I accepted as…
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Hi Nigel, Taste changes are certainly common during treatment and transplant but that's due to the chemo. In me I think they returned to normal a few months after the transplant but I wouldn't say it's had any lasting effects like it sounds that it has with you. I guess there's a little bit of our donor in all of us now,…
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Hi Neela, As Krista has said GvHD can take a long time to overcome and 4 weeks is quite a short time for treatment to have had any dramatic effect in your brothers case. It can be very frustrating and I do understand how nervous you are. I had skin GvHD and the steroids I started on had a slight effect in the early days…
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Hi Lara, I think in the early days after transplant we are much more sensitive to sunlight. I seem to remember being warned about taking care in the sun, using the maximum protection sun cream and keeping covered up. I also had very dry itchy skin, mainly around my face, but also my limbs too and that also started about 3…
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Hi Gabby, its good to hear that your son is home. It's a significant milestone but he still has a long long way to go till he's recovered and I'm afraid to say he probably will find it frustrating. If he's young he will want his life to get back to the way it was and go out and socialise, but he won't be ready for that…
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Hi there and welcome to the forum. I’m one of the community champions and had a stem cell transplant myself over six years ago for ALL. It’s difficult to be able to tell you what to expect as we are all different and react differently to transplants. Side effects can vary from one person to another too, so it is often a…
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Hi Gabby, thanks for the update. That’s great eww, it’s about the same time as I came home after my transplant. The medical team will brief you beforehand but it’s still very early days so you need to be very cautious and keep him away from any sources of infection. Amyone with a cough or cold needs to keep away fo4 the…
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I’ve often thought about doing a genealogical DNA test to research my origins and find links to other parts of my family. I asked my consultant som3 time ago abou5 this and she explained that a blood test would show my donor DNA but since most DNA kits use mouth swabs that my saliva would be my original DNA. Best regards,…
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Hi Krista, I’m sorry to hear that your fiancé has been in hospital for so long. That must be really tough on both of you. Unfortunately I can’t really give you any constructive advice as to how to cope with the boredom he must be feeling. Throughout my time in hospital I used to write a blog, which at least gave me…
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Hi Lara, thanks for that great tip which I hope some of the patients currently going through transplant will find useful. I was told that mouth ulcers are fairly common early post transplant, or it’s certainly fairly common to get a really sore mouth. That in turn makes eating very difficult at a time when it’s important…
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Hi Gabby, It's difficult seeing a loved one going through this and I can imagine it's even tougher when its your son. At 25 he is possibly a bit more independent and as you say, maybe he just wants to get on and get over it his own way. A transplant really does knock the stuffing out of you and he will be very tired and…
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Hi Gabby, I hope your son is feeling ok and fingers crossed he has a smooth recovery. I’m one of the community champions and a transplant patient myself. You don’t mention how old your son is but I know if it was one of my boys, one in particular, he’d be more than happy to spend all day on his PlayStation! Whilst that…
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Hi Robyn, I’m one of the community champions on the forum and a transplant patient myself. First of all can I offer my deepest condolences for your loss. I really can’t imagine how hard this must be for you. As an older patient my experience is clearly different but I know a couple who lost their daughter through similar…
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Hi Lindsay, The chimerism is the measure of how much of his system is that of the donors compared to his original system. Your husband is still probably quite early in his transplant if he's just over 100 days and at that time, the chimerism can fluctuate a little, particularly if he's had an infection like you mention.…
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Hi Christine, happy new year and thanks for the update. I hope Bobs treatment goes smoothly and that it proves successful. Please keep us updated. Best wishes, Steve
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I didn’t think there was an issue with funding for second transplants any more. A while Bach NHS England had withdrawn their funding for routine second transplants and had introduced criteria that had to be met. A high profile campaign by Anthony Nolan and other organisations forced the government to reverse the decision…
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Oh no Mandy, I'm so sorry to hear your sad news. We've all watched the progress that Sean has been making and the setbacks he has encountered. There's no doubt he has fought this with all his strength and it must be such a blow that he lost his battle after all this time. I remember meeting you and your mum at one of the…
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Hi Paul, Welcome to the forum. I also had ALL and had my transplant in January 2013, so probably just before yours. I had some skin GvHD after my transplant which meant about another two years of ECP treatment, but that is long since finished. Thankfully my only treatment these days is penicillin tablets daily and annual…
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Hi Mariana, I'm so sorry to hear about your sister. I echo what Greg has said and that you must not blame yourself. You did everything you could for your sister and gave her a chance of survival. A transplant is still not an exact science and there is a myriad of things that can happen. Unfortunately sometimes transplants…
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Hi Jane, Thanks for the update, it's great news that things are still on track and above all that you are in remission following your setback. I think it's getting to that time of year for coughs and have just started with a sore throat myself. I hope yours goes soon and you can continue your recovery unhindered. Take…
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Hi there, I'm sorry to hear of your problems and that you've relapsed. I don't know as much about AML as I had ALL, but it sounds unusual for your face and neck to be affected if the transplant appears to be working and your counts are normal. I hope somebody has some experience of this and can help and reassure you, but…
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Hi Marie, I don't know much about the accommodation at UCLH but I would have thought that when Thomas has the transplant itself he would need to be in a more specialised room with controls that will protect him against infection. As a relative staying with him it would be you that will be accommodated in the Cotton Rooms…
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Hi Lindsay, I think the conditioning treatment has a similar effect on us all and unfortunately I don't think it can be avoided, but thankfully we are warned in advance. The main effect as Rachel has suggested is vomiting and diarrhea which can be very debilitating but thankfully the worst of it only lasts a few days,…
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Hi Krista, I can't speak about GvHD of the gut but I did have photophoresis for GvHD of the skin and it did work in my case, but it took some time to see some improvement and was probably around the 10 cycles you mention. I had it fortnightly at first but the frequency dropped off when some improvement was seen. I didn't…