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Dieseldrinker62
Online Community Champion - Transplant for ALL in January 2013
Comments
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Hi there and thanks for posting. I'm one of the online community champions and had a stem cell transplant myself for ALL 9 years ago. You've given a lot of technical information which I don't fully understand but hopefully someone from the Anthony Nolan team can help with that information. I have seen a number of posts…
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Hi Julie, like Michelle I'm an online community champion and had a stem cell transplant for ALL almost 9 years ago. You do sound like you've been through the mill with your treatment, two transplants and the infections that followed. I've been on the forum for a few years now and I think it's the first time anyone has…
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Hi Glynis, I’m one of the community champions and had a stem cell transplant 9 years ago. I’ve seen the responses to your other post and can understand your concerns. Nobody would deny that a stem cell transplant is an easy process to go through, but we are all different and our experiences vary from person to person. Your…
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Hi Gail, I did a quick google and came up with a report which you may have seen. This describes some of the background to the use of Ruxolitinib due to difficulties accessing ECP as a result of Covid restrictions and gives some detail on the effectiveness found in some trial areas.…
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Hi Gail, thanks for the update, and the link to the document which will hopefully be useful for anyone considering the shingles vaccine. Regarding the ECP, my own experience was that when the frequency of the ECP was reduced (probably too early) my GvHD flared up and the frequency was increased again to cover it. I guess…
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Hi Laulau, I recently had my 3rd dose, which according to the NHS app was a booster in my case. Apart from a really painful arm for a day and a half I had no adverse effects. I'm now nearly 9 years post transplant, so classed as a long term survivor now. As I am not on immunosupression or undergoing any active treatment I…
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Hi Gail, I don't recall having a vaccine for shingles but I guess that may be because up until now there has only been a live vaccine. I guess it may be worth a call to his medical team to get their view and agreement. I know that the norm is for us transplant patients only to have inactive vaccines so I guess it should…
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Morning Lynsey, I hope you find some answers, but as frustrating as I'm sure you find it I think it takes a while to overcome GvHD. To have only had ECP for four months doesn't sound very long to me, but mine was so long ago I can't honestly remember how long it took to see some improvement. ECP is an expensive treatment…
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HI Lynsey, thanks for posting. I'm one of the community champions on the forum. I'm sorry to hear that you're having trouble with GvHD I suffered from GvHD after my own transplant so can understand how you feel. In my case it affected my skin and I ended up having a long course of steroids, combined with ECP. The ECP did…
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Hi Laulau, from what I've seen in the media it seems to be early days as far as booster vaccinations are concerned and I guess like the initial vaccinations it will be a progressive process where we will be contacted when they are ready for us to have the boosters. It's good to see that immunosupressed blood cancer…
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Hi again Lucy, Just picking up on the useful tips that people have been giving regarding relief from the itching. I found it really difficult to get to sleep when my skin was dry and itchy, so most nights I had a long soak in the bath with some E45 bath oil in it which moisturised my skin really well and stopped the…
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Hi Eliza and thanks for posting. I'm one of the online community champions here on the forum and a transplant patient myself. I'm sorry to hear that your husbands chimerism has dropped and can appreciate how worrying that must be for you both. I have seen other patients here on the forum who've had similar experiences so I…
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Hi Lucy, Like Michelle I’m one of the Online Community Champions and like her I also suffered from skin GvHD after my transplant. As Michelle says it can present itself differently in different patients, so as Tom has suggested it’s best to speak to your medical team and let them check it out. Did you manage to speak to…
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Morning Clare, It's good to have a little freedom back at last but as someone who had my transplant a long time ago now I guess I'm probably a little more relaxed about the easing of restrictions. That said, I am still nervous about being exposed to Covid and how my body would respond if I caught it. I work in a busy site…
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Hi Mel, you know we’re always here to bounce concerns off, as are the Anthony Nolan team who can offer you direct support as a carer if you need it. As transplant recipients, we’ve see it from the other side and know how your husband probably feels. But we’ve also seen our loved ones go through it all with us too and at…
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Hi Steve, I was wondering whether your levels had improved at all since the last time you'd posted and whether it was a temporary blip or things are unchanged. I hope things have picked up. Good to hear that the GvHD has improved and hopefully the ECP will resolve your issues. Regards, Steve
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Hi Mel, Thanks for the update and I'm sorry to hear that your hubby is still struggling with recovery. It's good that he sounds like he's still staying positive despite it all and perhaps seeing people that are worse off than him helps with that. It does take an extraordinary length of time to recover from a transplant,…
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Hi Laulau, Sorry, I missed this update somehow. That's brilliant news and must be such a relief. How are you feeling generally, everything OK? Steve
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Good morning Steve, I'm also called Steve and am one of the Community Champions here on the forum. I'm a transplant patient myself and had my transplant in January 2013. Like you I also had skin GvHD which was treated successfully with ECP. It sounds like you're on a similar path to me. I'm sorry to hear that your…
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Hi Jess, I know it's hard to ignore thoughts of complications and relapse, but try not to think about it if you can. I don't know what the statistics are but relapse from transplant certainly doesn't affect everybody, and the majority of people get through their transplant without relapse. The reason your medical team…
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Hi Jess, Your consultant will have to explain all the things that could potentially happen so that you understand the risks and the potential side effects that you might encounter as you go through the process, but it's really important to remember that those risks and side effects might not ever happen. Your consultant is…
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Hi there and thanks for your post. My name is Steve and I'm one of the Online Community Champions on the forum and had a transplant myself in 2013 for ALL. I'm sorry to hear that you've relapsed and are now facing the propects of a transplant. It is a big shock being told that you need a transplant and those of us on the…
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Hi Gail, Coincidentally as one of the Anthony Nolan patient panel I reviewed a new guidance leaflet being developed by Anthony Nolan yesterday, which covers the subject of post transplant vaccinations. You are right that live vaccines are generally avoided until at least 2 years post transplant and that period could be…
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Morning all, It's good to hear that many of us are getting or have had our second vaccines. It seems tat there are still side effects with some people but they are generally short lived. I had a very mild headache in the afternoon follwing my early morning vaccination but nothing after that. I feel a sense of relief at…
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Hi all, As an update, I had my second vaccination a couple of days ago; Astra Zeneca again. Next to no side effects this time I’m pleased to say. I don’t have a sore arm at all and haven’t had a headache this time as I did with the first dose. I guess there are others of you out there that have also had your second jabs…
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Hi Buffy and welcome to the forum. Like Michelle I'm a community champion here and a transplant patient myself for ALL. I'm sorry to hear that there is still some residual disease after your brothers transplant which I'm sure must be very worrying for you all. The treatment and transplants we go through are complex things…
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Hi Laulau, I'm quite a bit further on in my post transplant age than many on here, but like most people I'm treating the lifting of shielding to be a cautious release of a bit more freedom, but even then will continue to be diligent and very careful. I have several friends and colleagues who've had Covid and it's knocked…
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Hi Laulau, I sympathise with you not being able to meet up with others. I know just how you feel as I'm sure many others do, but it's wise to be cautious. Hopefully the relaxation of shielding will help you see people, but I'm sure you don't need me to tell you to be careful. Breathlessness is something I suffered from in…
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Hi Laulau, I'm able to access my vaccination records online via my GP so I can confirm what I had. Diptheria, parts 1, 2 and 3 Tetanus, parts 1, 2 and 3 Perissus, parts 1, 2 and 3 Polio, parts 1, 2 and 3 HIB, parts 1, 2 and 3 Pneumococcal, parts 1, 2 and 3 Meningitis, A, C, W and Y The only jabs I had as a child that I…
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Hi Laulau, To be honest I can't remember how long I was on the steroids, but like you I was on the highest dose of Prednisolone they could give to start with, which I think was 30mg twice a day. From memory they did try to wean me off them quite quickly, but this was tempered with monitoring my GvHD to make sure that it…