Please read the house rules and keep this community safe for yourself and others.
Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
-
Hi John, Apologies for not replying sooner, I'm still getting used to the new format of the forum. I'm one of the online community champions and had a stem cell transplant in 2013 for ALL. Have things improved with your weakness in your legs at all since you posted? It was something I suffered with after my transplant too…
-
Hi there SJC and welcome to the forum. I'm Steve, one of the online community champions here, and had a stem cell transplant in 2013 for Acute Lymphoblastic Leukaemia. I'm sorry to hear about your husbands diagnosis after all he's been through so far. In my case I had cells from an unrelated donor, located by Anthony…
-
Hi Katy, sorry to hear of your relapse so long after your transplant. Like Dan, I'm also a community champion here and had my transplant over 10 years ago to treat ALL. There have been varous posts here about second transplants at various stages, including some that have been even longer after the first transplant than…
-
HI Suedb, welcome to the forum. I'm one of the online community champions here and I am a transplant patient myself, having had an unrelated donor transplant in 2013. I'm sorry to hear that your husbands transplant has failed and as you've probably seen from looking around the forum, transplants do unfortunately fail…
-
Hi there, welcome to the forum. I didn't develop any allergies to food ore otherwise after my transplant, but in reverse, my transplant seems to have cured my hayfever which I used to suffer badly from before my transplant. I wonder if we inherit things like this from our donor and perhaps our tloerance of certain things…
-
Hi John and thanks for posting. I was probably in a similar situation regarding the risk of relapse once the chemotherapy got me into remission as I was also viewed as being at high risk of relapse. was in remission after the first round of chemotherapy and had two further rounds of chemo after that before my transplant.…
-
Hi Sandra, thanks for posting. I remember from my transplant that in the early days of my recovery my facial and body hair came back quite a bit darker and thicker at first then it went again and when it came back again it was more like the original colour. I was on Cyclosporine for a long time after my transplant due to…
-
Hi Lesley, thanks for posting. I'm one of the online community champions here and had a transplant just over 10 years ago. I can imagine that this will be worrying for you and your husband. It's very early days in his transplant and I guess it's possible that the infection has affected his counts climbing. I remember from…
-
Hi Michelle, I can understand your frustration, recovery seems to take so long. I'm assuming this is something that just hasn't come back at all rather than something that has developed recently? I found that it took an incredibly long time for my muscle and strength to return, and I don't think it has ever got back to…
-
Hi Adelaie, Great news that your daughter is home which I'm sure is a relief to you all. I'm sure being at home rather than in hospital will help her feel better and she can hopefully focus on recovery now. I hope the biopsy doesn't show up anything too dramatic and that her bladder is now OK. All the best, Steve
-
Hi Marsha, you'll be pleased to know that your taste will eventually return to normal and all those things you used to enjoy will taste just as good as they did before your treatment. I can't remember how long it took for my taste to return but it was a gradual process. Hang in there and yours will come back too and you…
-
Hi Rayatt and thank you for posting. I'm one of the patient champions here on the forum and had a stem cell transplant myself just over 10 years ago for ALL. Your journey since your transplant is one that I think will be familar to many if not all of us here. You are right that it is an incredibly tough process to go…
-
Hi Beaglegirl, As Helen has said the best thing is probably to speak to your husbands medical team. Your husband is approaching 100 days but in reality that is still early and the bone marrow is still recovering at this stage so there may be dips in counts for one reason or another. When I had my transplant I thought…
-
Hi Pauline, Can I start by saying I'm so sorry to hear that Stephen passed away following his transplant. I looked back through your posts and I know that his transplant was postponed a number of times so it's incredibly sad that once he had the transplant he got an infection that he couldn't recover from. Unfortunately a…
-
Dave, Most of my issues with GvHD was dryness and flakyness of my skin which was incredibly itchy and uncomfortable. It was also reddened and inflamed in places, particularly around my neck and eyes. I can't remember it being tight particularly. I'd lost so much weight that I think my skin was a little looser than it had…
-
Hi Pandapop, welcome to the forum. My name is Steve and I'm one of the online community champions here. I'm a transplant patient myself and had a stem cell transplant back in 2013 for ALL. I remember my first appointment at the Haematology department after a blood test at my GP's showed I had a low white cell count. At…
-
Dave, I'm with you on Pot Noodles! They become almost a staple part of my diet during my recovery, along with thick soups, curries with rice, weetabix and porridge, rice pudding and other soft foods. I also got a taste for energy drinks, but thankfully that taste has waned and I don't drink them any more. Pork scratchings…
-
Morning Helen and Dave. Dave has hit the nail on the head with his last post in that we are all different so our bodies react differently to treatments. This means that ECP treatment will be variable between patients and in some cases it doesn't always work, but certainly the rate it works will be different for each of us.…
-
HI Dave and Helen. Dave is right that it does take an inordinate amount of time to see some improvement with the ECP. I was on ECP for around two years but it did eventually cure my GvHD, so please persist with it and give it chance to work. It's an expensiive process so I suspect your clinical team wouldn't continue if…
-
Hi Audrey, thanks for that update, things do sound like they are becoming more positive. I was put on steroids to treat my GvHD and that is one of the main things that kick started my recovery. The steroids made me feel hungry and helped me get my appetite back, which in turn gave me some strength. I hope the same can be…
-
Hi Alison, I can understand your anxiety. I've only had a single transplant and didn't have Campath, but I was so ill after the conditioning chemotherapy I really didn't feel ready to go through with the transplant. I'm sure I've read before about someone that suspected donor derived leukaemia. I guess its quite plausible…
-
Hi Jennie, Your condition sounds very much like GvHD and is what I went through (probably about the same stage) so you have my full sympathy over how it feels. I also had dry flaky skin on my face and the dry skin eventually affected most of my body. It was really difficult to get relief from it. I got to the stage where,…
-
Hi Helen, Good news on the mouth GvHD hopefully and with luck the remaining effects will start to subside too. Steve
-
Hi there Cottie, welcome to the forum. I'm a patient champion here and had a transplant in 2013. Whilst I can't relate directly to your experience, I've been around the forum a few years no and do remember a thread with someone in virtually the same situation. I seem to remember they had a child or relative that was…
-
Hi Helen, I hope it goes well. I've never really had a problem with the flu jab other than a sore arm for a day or two afterwards. I had texts from my GP recently to book my flu jab and my covid booster but haven't got round to it as yet, I really must get them done soon but just need to try and fit them around work at the…
-
Hi KeepTheFaith, welcome to the forum. I have no experience with Sorafenib I'm afraid as it wasn't part of my treatment, but hopefully one of the Anthony Nolan team will pick this up and be able to give you some advice on its effectiveness long term. There may be others who have been treated with this and they may be able…
-
Hi Otterfield, at day +43 you're still in the early days of recovery particularly if you've only been out of hospital for a week. I really struggled with my appetite and sickness for a long time, I can't remember how long precisely as it's so long ago. I had difficulty keeping anything I ate down, even things like…
-
Hi Tim, welcome to the forum. I'm Steve and I'm one of the online community champions here. I'm a stem cell transplant patient myself and had a transplant in 2013 from an unrelated donor for acute lymphoblastic leukaemia. For me I wasn't given a choice regarding whether I should have a transplant. I was at a high risk of…
-
Hi Helen, thanks for the update. That's good news that they feel confident to reduce the frequency of your sessions. They will probably only be able to reduce it gradually so you may be on fortnightly sessions for as few cycles now before they can step it back a bit further. I wasn't back at work when the ECP started so I…
-
Hi Helen and Dave, It's several years since I had ECP for skin GvHD so my memory is a little hazy on the details but I'll give you what I can recall of my experience. I ended up having around 30 cycles of ECP over the course of about two and a half years. At first I think it was weekly or fortnightly intervals and after a…