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Dieseldrinker62

Online Community Champion - Transplant for ALL in January 2013

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Dieseldrinker62
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Comments

  • 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 g…
  • 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 rememb…
  • 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…
  • 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 general…
  • 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 ear…
  • 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. …
  • 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 f…
  • 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…
  • 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…
  • 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…
  • 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 …
  • Hi Laulau. I had difficulty putting weight on after my transplant and had a very poor appetite at first so was struggling to eat. What kicked it off for me was being put on steroids for my GvHD about 3 months after my transplant. They made me fee…
  • Hi Laulau, glad you managed to get confirmation from your consultant. It shows how important it is to keep an eye on your body and raise any concerns with your medical team. Most times it's probably nothing drastic, but it's important that they k…
  • Hi Laulau, it's not something I've experienced. What size are the patches and are they confirned to a particular area of the skin or all over? Steve
  • Hi Michelle, I had my vaccine yesterday afternoon, in my case the Oxford AstraZeneca one and like you I've had no issues so far, other than a very slight ache in my upper arm. Even the initial tiny amount of bruising around the injection site has…
  • Evening all, Just had the text a few minutes ago so my appointment is booked for Thursday afternoon. Can’t wait! Steve
  • Hi Cameron, Great to hear that you’ve had your jab and congratulations on the news that your offer to study medicine. I hope that all goes well. Well done too on volunteering for the NHS. It sounds like the sore arm is the most that people are…
  • Hi Laulau and Meercat, It’s great to hear you’ve both had your jabs and all is well. I’m sure it will give comfort to other transplant patient's that might be apprehensive about the vaccinations. I’m sure we can all put up with a bit of soreness …
  • Thank you both for your comments and support. Michelle, I'm sorry to hear you're finding this lockdown difficult, but I don't think you're alone. I also feel that this time has been more difficult due to following the guidance more rigidly. I fin…
  • Hi Laulau, I guess the characteristics of the population in different areas has a bearing on how soon each priority group gets vaccinated. There may be areas with high proportions of elderly people so it may take longer to vaccinate those groups,…
  • Hi Mel, I hope you and your husband are keeping OK and safe. It sounds like your hubby is having a lot of trouble with his skin which I assume is due to GvHD? I had the option of using liquid paraffin, but to be honest I avoided it as I didn't li…
  • Hi Raka, I'm sorry to hear that Nathan is feeling down and it can't be easy going through all this at his age. Like Michelle I'm one of the Online Community Champions on the forum and at 46 when I had my transplant I was a LOT older than a tee…
  • Hi Laulau, This sounds very similar to something I went through just as I was released home after my transplant. My tongue turned white and became really sore and cracked. I was told it was a fungal infection and it was treated with a multitude o…
  • Hi Hanna, I’m sorry to hear your son is struggling. It sounds unusual that this only seems to flare up at night. Has anything changed, such as bedding or clothing that he wears to bed? Is his skin dry or showing any rash at all? I had skin GVHD d…
  • Hi everyone, In case you didn't catch it there was a really good discussion event on Facebook yesterday about the vaccines relative to blood cancer patients. A panel of experts were answering questions that blood cancer patients had been asking a…
  • Lockdown 3.0! After last nights announcement by the Prime Minister I expect there is some anxiety again amongst blood cancer patients, particularly due to the rapid increase in infection rates and cases. The NHS capacity is under increasing press…
  • Hi Andrew and I totally agree with that sentiment. For those of us that have gone through chemotherapy and transplants we can’t become blood donors (or organ donors I think either) but through our experience we know how important blood products a…
  • Hi Laulau, I can understand how you're feeling as I got a mouth infection too. Mine was earlier, at just three weeks after my transplant and it started the Friday that I was discharged home following my transplant. In my case it was a fungal infe…
  • Hi Laulau, Congratulations on reaching the 100 day milestone. Personally I would still be very cautious about mixing, particularly with everything that is going on at the moment. I think the 100 day milestone means you’ve reached the point when t…
  • Hi Laulau, I remember having problems with my nails. They ended up a real mess and it was as if new nails were growing over the old at one time. They became wrinkled and crumbly and I thought at one point I was going to lose them completely as th…