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Dieseldrinker62

Online Community Champion - Transplant for ALL in January 2013

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Dieseldrinker62
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  • 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…
  • Hi Ray and welcome the the forum. I'm one of the online community champions here and had a stem cell transplant in 2013 for ALL. Thank you for sharing your experience. It sounds like you've had quite a journey and still have some way to go. You are still quite early in the recovery process at around 6 months post…
  • Hi Audrey, thanks for the update on your daughter. Your daughter sounds very much like me after my transplant. I had no appetite for a really long time and it made me really weak.. I'd spent so long in bed that I lost the muscle and strength in my legs, and my lack of appetite made things worse as I was not getting enough…
  • HI Beaglegirl, it's good to get an update from you. I know it's probably hard to feel positive but to me, the good thing is that your husband has been put back into remission which sounds like a good starting point. Hopefully he can stay that way and the second transplant will keep him that way. I know your husbands case…
  • Hi JPW, welcome to the forum. I'm Steve, one of the online communicty champions. I had a transplant for ALL in 2013 at the age of 46. I've been around the forum for a few years now and thought I remembered a thread from somebody your partners age so I did a search and found the thread in the link below. This is an old…
  • Hi Scottish, welcome to the forum. I'm Steve and one of the online community champions here. I had a stem cell transplant in 2013. In my case it was carried out in Leicester. I'm presuming from your name that you're referring to the Queen Elizabeth hospital in Glasgow? There was someone a while back that I remember was due…
  • Hi Audrey, If it's any comfort I went through a phase of passing out and real weakness. I couldn't even stand long enough to get weighed without collapsing and I passed out on two occasions whilst I was having chest x-rays, even whilst I was sat in a chair one time. I had various tests including MRI's EGC's and numerous…
  • Hi Audrey, thanks for the update. That's good news that her Neutrophils are starting to climb and hopefully that means her body can start to fight back on its own though it will need some help from medication for a while. I can relate to the problems eating and keeping anything down. It's something I went through too and…
  • Hi Michelle, I totally understand where you're coming from with the 'new me' feelings. I've heard it a few times being referred to as the new normal and I've gone through it myself. It's a case of getting used to your new limitations. We have been through so much during our transplants we are not the same. For me I'm not a…
    in Hi Comment by Dieseldrinker62 August 16
  • Hi Michelleanne, I'm Steve, one of the online community champions here and had a transplant for ALL in 2013. I'm glad you've found the forum and that it it hopefully helping you. I think it's difficult for those around us, or who have not gone through what we have, to understand how it feels to have a transplant and what…
    in Hi Comment by Dieseldrinker62 August 16
  • Hi Audrey, I'm so sorry to hear about your son and send my deepest condolences. I'm sure on top of everything you are going through with your daughter that must be devastating. I can't begin to imagine how you feel and hope you have lots of support around you to help you through this difficult time. Regarding your…
  • Hi Babs. I haven't heard BK Virus mentioned before and it's not something I remember experiencing myself when I had my transplant. From what I've read it looks like it is common in most people but in a healthy person they have anti-bodies to fight the virus and keep it at bay. As your daughters immune system will be…
  • Hi there. I'm sorry to hear about your sons situation which does sound desperate. I haven't heard of Jakavi before so I did a quick google. It sounds like Jakavi is maybe a brand name (?) and its main ingredient is Ruxolitinib Phosphate. I have certainly heard of Ruxolitinib and there are several patients here on the forum…
  • Hi Auds21. I'm not sure I can offer any assurance that will help directly, but what I can say is that when I went into my transplant I didn't feel at all ready. I was so weak and sick I didn't want it to go ahead and almost asked them not to proceed until I felt better. The reality was that I probably wouldn't have got any…
  • Hi Alison, I can't give you any advice on counts I'm afraid. All I would say is that I never paid any attention to my blood results and never tracked anything other than my neutrophils once I'd had my transplant. To me that was the only thing that was important, the rest I left to the doctors. If I needed a transfusion of…
  • Hi Malkyboy, welcome to the forum. I think the only people who could answer your question would be your medical team as they will be aware of the status of your immune system and therefore the risk to you. This will be dependent on the treatment you've had to date and any immunosupression you may have had. Assuming you've…