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Howdy, Stranger!

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New to the forum? Please say Hello.

It's great that the forum is growing in numbers. Please spread the word to others and lets help as many people as we can get through the tough times they are going through, whether it is waiting for a transplant, undergoing transplant, or recovering from transplant.

If you're new to the forum, please say hello and introduce yourself. We're keen to hear from new members and its great for everyone to be able to share their experiences with others going through similar circumstances.

Steve

Comments

  • Hello! My name is Ashling and I am 27 years old and live in Buckinghamshire. I developed Acute Myeloid leukaemia at the age of 25 and was put in the 'poor box' for survival. I got a first remission and had 2 induction rounds of chemotherapy and one very intensive pre transplant round of chemotherapy. I engrafted 10 days after transplant (German donor <3 ) but developed a virus driven lymphoma a month after my release from hospital and ended up in intensive care after a brain haemorrhage and suffered multiple seizures caused by an infection, low platelets and high temperatures. I had 3 or 4 rounds of intensive chemotherapy to eradicate the lymphoma and have been out of hospital and all clear since September 2013. Feeling great now :)
  • Hi Ashling,

    Welcome to the forum. Wow, it sounds like you've been through the mill buut it's good to hear that you are doing well now. I hope that continues.

    It's good to hear that so many of us that were given 'poor' chances of survival are still here and fighting fit, which might not have been the case only a few years ago. My best chance of long term survival without relapse was a transplant, so it's thanks to Anthony Nolan and my donor that I'm still here.

    Steve
  • Hi there. I am 3 years post transplant for AML multilinage dysplagia. Everything is going well. AN found my donor in Austria. I would love to meet her. Thank you Anthony Nolan
  • Hi Sally,

    Welcome to the forum. I'm glad things are going well for you. I'm only 18 months post transplant but also doing well as far as I can tell.

    I wondered have you contacted your donor at all through Anthony Nolan? I'm taking steps to contact mine, which I can do anonymously within 2 years post transplant, but after that it can be done directly if both parties are willing. Like you I hope to meet my donor some day to thank them in person.

    Regards,

    Steve
  • My name’s Katherine, I’m 34 years old and I’d like to introduce myself as a new community champion on this forum.
    I’m in remission from Chronic Myeloid Leukaemia following a transplant from an unrelated door in October 2013 – a German lady.
    I was diagnosed with CML in April 2013 and then underwent months of intensive chemotherapy and radiotherapy at the Queen Elizabeth Hospital in Birmingham. I continue to take the (TKI) tablet Nilotinib daily to ensure the leukaemia doesn’t return.
    My journey with leukaemia has been and continues to be the focus of a newspaper campaign which aims to raise awareness of leukaemia, raise funds and increase the number of blood, organ and stem cell donors. The campaign continues to be successful and was recently praised by the Prime Minister following a parliamentary debate in which I was used as an example.
    This campaign work continues to snowball and I’ve recently started working alongside Anthony Nolan to help increase education in schools and colleges around the subject of transplants and donors.
    As well as supporting Anthony Nolan and its work, I organise a used stamp collection for the charity Leukaemia CARE which to date has raised more than £1,000 from around 200kg of used stamps. I am also the joint organiser of the charity motorcycle ride the BONE-shaker MARROW-thon which raises money for Anthony Nolan, Cure Leukaemia and the Queen Elizabeth Hospital in Birmingham.
    Prior to being diagnosed with CML, I was a reception class teacher at a primary school. I’m married (my husband is also a community champion on this forum) and I live in Burton on Trent.
    Please feel free to follow me on Twitter: @Leukaemia_and_K or take a look at my own website www.katherines-story.com for more about me.
  • Hi,
    I’m Stephen, and I’d like to introduce myself as a new community champion on this forum.
    I have not had leukaemia or a transplant myself – I am the husband of Katherine Sinfield (also a community champion) who is now in remission from Chronic Myeloid Leukaemia following a transplant.
    I may not have personal experience of leukaemia but I can offer a family perspective as I’ve been there throughout the entire journey from diagnosis to remission.
    I took 11 months off work while Katherine underwent treatment – returning to a ‘reduced hours’ role in March this year so that I could continue to support Katherine.
    I’m currently a newspaper journalist and content manager but prior to taking my extended leave of absence, I was a weekly newspaper editor.
    I help support Katherine with all of her charity campaigns and use my role in the media for much-needed publicity.
    Along with Katherine, I’m the joint organiser of the BONE-shaker MARROW-thon – a charity motorcycle ride which raises money for Anthony Nolan, Cure Leukaemia and the Queen Elizabeth Hospital in Birmingham.
    I’m 34 and live and work in Burton on Trent.
    Feel free to follow us on Twitter at @Leukaemia_and_K or @The_Boneshaker
  • Welcome to the forum Katherine and Stephen. I've been away for a few days so this is the first opportunity I've had to welcome you.

    Katherine, as you probably know I follow you on Twitter. You do fantastic work for publicising news and campaigns for Leukaemia and other forms of blood cancer and the BONE-shaker MARROW-thon was a great success, so well done you.

    I know the QE hospital in Birmingham very well myself but not as a patient. I was one of the senior project managers for the contractor that built it and spent 7 years helping design it and build it, so I hope your time there has been as pleasant as it could be under the circumstances.

    I see from your latest tweet that you are back in hospital so I hope it's nothing serious and that things are still going well for you.

    Take care and keep posting!

    Steve
  • Thank you for your kind message - I hope you are well?
    Yes I'm back in hospital with a breathing problem. I've noticed for a couple of weeks that I was becoming breathless when walking up stairs or up a steep incline.
    We mentioned this at clinic on Wednesday and an emergency CT Scan was arranged, We had a call that evening to say that I needed to return to hospital but it was Thursday evening before a bed in my usual ward was found.
    I am being treated for pneumonia as I have either a fungal or bacterial infection on my lungs. I am therefore on IV antibiotics etc but should be home by Monday/Tuesday with tablets.

    Your experience with the QE hospital and its design etc may come in very useful.
    I am in the midst of trying to convince LEGO to donate me a few thousand bricks. The reason is that the hospital's charity - QEHB - are inviting people to build a hospital-themed project,
    I have therefore chosen the rather extreme route of opting to build a scale replica of the actual hospital out of LEGO.
    This is obviously in its very early planning stages as I have yet to convince LEGO to donate a couple of thousand bricks etc.

    Take care and thanks once again for your message.
  • Keep me posted on the model Katherine and if I can help I'd be happy to do so. I might be able to lay my hands on some floor plans which could help with the shape. The QE will be a tricky shape to build in LEGO with all the curves in the ward towers!

    We had various models built during the project but I don't know where they ended up. There may still be one of the whole site in what is left of our site office.
  • Wow,many thanks.
    So far my request for Lego has gone unanswered from Lego themselves. I had an appeal in the newspaper with a few readers offering to donate the odd tub or two - however, with tens of thousands of bricks needed I really need Lego to get onboard. I will keep you posted - it's going to be a long term project.
    You did a good job on the hospital and I hear it could be expanding even further with the movement of the children's hospital.
  • Anthony Nolan have just revived my blood sample for further testing. Can anyone tell me how long their testing took as I am leaving the country in a few months and I still want to donate. Don't know weather I should change my flights or just see what happens.
  • Hi Gaz, the best thing to do is email our Donor Support team at donorsupport@anthonynolan.org - they'll be able to tell you more about how long the blood sample testing will take.
  • Hello everyone, my name's Rich and I was diagnosed with ALL 5 years ago yesterday leading to the sort of introspection that gets one writing on forums! I had a full intensity transplant in 2010 which left me with a bunch of complications - steroid induced Addisons, anhidrosis and chronic GvHD to name a few - but happy and glad to be here.
  • Hi Rich, Welcome to the forum.
    Glad to hear that you are doing well five-years on but sorry to learn you have encountered so many problems.
  • Hello everyone, not really sure if I am doing this correctly but here goes. I was diagnosed with AML in November 2011 luckily I have 6 siblings, one sister was %100 donor match. I received my transplant on the 8th February 2012 and have been lucky enough to celebrate almost 3years post transplant with only the occasional bouts of ill health such as shingles and quite a few bouts of chest infections. I consider myself extremely lucky considering I was given a matter of months survival without a transplant. Although I do not have the energy I once had, I have the privilege to see 2 grandchildren born and god willing growing healthily.
  • Hi EMcQ

    Welcome to the forum.

    Pleased to hear you had a good donor match. I think we all have our ups and downs but things do seem to get better after time.
    My transplant was in May 2012 from an unrelated donor. I don't have the same energy levels but try and make the most of what I have and keep active, I find walking with a group (Macmillan) helpful and keeping busy with grandchildren also helps.

    Hope you continue to keep well, and enjoy your grandchildren.
    Also hope you keep in touch on this forum, it's really helpful to hear and share experiences.

    Best wishes, Peter
  • Hey all myself and my three brothers were diagnosed with XLP in 2003. In 2004 I had my BTM transplant and my donor was my mother. It makes it all weirder because my mother is the carrier of my condition. This year it was my 10 year post transplant even thought I still have some on going issues with GVHD. If anyone has any question on GVHD please contact me as I have had it from the top of my brain to the bottom of my feet (a heck of a lot )
  • Hi jehartley and welcome to the forum. It's good to have another Hartley (I'm one too).

    Remarkable that your mum donated despite being the carrier.

    I've suffered with GvHD too since my transplant in January 2013 but seem to have got away lightly to date having just had it affecting my skin. A recent change in steroid cream and continuing Photophoresis seems to be getting on top of it though and I'll know more when I have a review with the doc.

    All the best,

    Steve
  • Hi jehartley

    Welcome to the forum, sounds like you have a lot to offer. Sorry to hear you still having issues ten years on, hope they not too serious.

    I had a unrelated transplant May 2012 and had GvHD problems but like Steve they were managed quite well with steroid creams and lashings of Diprobase.

    My main issue is catching chest infections, have one at the moment which started as classic flu which has developed into a persistent cough.(had flu jab in September). Luckily contacted Hotline at my transplant centre yesterday and given full checkout with x-Ray and prescribed two lots of antibiotics.

    I'm sure members will be in touch to take up your offer .

    Best wishes
    Peter
  • Thanks Peter for the reply I've had loads of chest infection because of GvHD. You definitely did the right thing by contacting your hotline team, I used to get load of Chest infections around this time building up to Christmas
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