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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Just joined and wanted to say Hello

I have recently been diagnosed with AML and am being treated at the Christie. I have been told I will need a stem cell transplant from a donor. As I am sure anyone who has experienced Christie care will testify it is excellent and the staff are knowledgeable, helpful and supportive. There is nothing like sharing experiences with others though so I know I shall find the discussions posted here helpful and in time be able to contribute support myself.

A bit of background on me. I am a 57 year old retired, fit and active woman with no history of ill health until end of 2015 when I was diagnosed with stage 1 NHL in my cheek of all places. During the early part of 2016 I was successfully treated with 3 cycles of RCHOP chemo and 15 fractions of radiotherapy. In July 2016 a PET CT scan showed no trace of disease. I bounced back and got back into enjoying retired life until March this year when having been skiing twice and performing in two concerts (I am a keen amateur singer) I had a series of coughs and colds that I struggled to shake off. Got rid of it at last and was a bit tired which I put down to post viral fatigue but got on with life. Got back from a weekend away with friends and felt really breathless and couldn't walk upstairs without pausing for a rest I got an emergency appointment with my wonderful GP who took me seriously (I thought it was just a virus) did a full exam and blood work up and sent me back to Haematology as fast as my legs would carry me. Anyway upshot is a diagnosis of AML and I am just through the first phase of induction chemo (DA) and waiting to see how my blood counts recover before another bone marrow biopsy to see if it has worked.

Obviously a scary time especially with such a sudden onset. The theory is that somehow the earlier chemo for NHL (still in remission) coupled with some genetic predisposition to blood disorders has triggered this. However that is a bit academic and fortunately it looks as though I am fit and well enough to undergo reduced intensity conditioning followed by transplant.

So that's my story - all support welcome!



  • edited June 2017
    Hello Gail,

    Welcome to the Forum!

    I am one of the new Online Community Champions on here, and it's always so great to see new faces on here, sharing their stories :)

    I am so sorry to hear of your recent diagnosis, it really sounds like you've been through it the last few years!
    It sounds like you have your general health and fitness on your side though and bundles of positive mental attitude, which will all prove to be extremely beneficial throughout your treatment and recovery...

    I am almost 6 years post transplant from an unrelated donor to cure a rare blood condition I was diagnosed with at the age of 3 (Congenital Neutropenia) and fundamentally prevent AML from developing which was predicted from an annual bone marrow biopsy I had in 2010... so after coming out the other side fitter and healthier than I could possibly have ever imagined, I joined this forum just last month as I felt it was time to share my experiences and any knowledge I have that may help others going through this difficult time.

    I hope you aren't experiencing too many horrid side effects that tend to come with Chemo - and I wish you all the very best for your blood results and bone marrow biopsy. Fingers crossed those little white ones make an appearance for you!

    Please let us know how you get on and do shout if you have any questions that we can try and help with.

    Best wishes

  • Hi Gail,

    Like Nichola I'm one of the community champions and echo her sentiments about being diagnosed which comes as a shock to us all. I guess after a period of no sign of illness after the NHL you were feeling good, so I'm not surprised you feel scared. Your symptoms of the AML and the speed at which you were put into the system after the blood tests sounds very similar to my diagnosis of ALL almost 5 years ago.

    The good thing is that it sounds like you are feeling comparatively well and have a positive outlook which will help you get through the process. You will have seen from this forum that it is by no means a walk in the park, but hopefully with our support you can get through the treatment smoothly and go on to make a full recovery.

    All the best,

  • Thank you Steve. Yes I am currently feeling very well - just the usual post chemo fatigue- and am currently out of hospital on 'parole' for a week before going back in for another cycle of chemo. Have to go for a cardio MRI and see the cardiologist this week as the earlier chemo for NHL has left me with some minor impairment which they want to try and avoid making any worse. Of course also on tenterhooks to know what the results of the bone marrow biopsy I had on Thursday tell us. But all in all doing OK!
  • Hi Gail
    I'm Rachel, a new Community Support Champion. I had AML followed by a SCT, it's good to hear you feel well post chemo and sound in good spirits which I believe is key to enduring the treatment and the trauma of the diagnosis.

    I have my fingers crossed for a positive BM biopsy result, please keep us posted on how you are progressing. Please feel free to ask any questions regards treatment, coping etc. or if you just need a rant... it's a particularly gruelling regime to experience.

  • Thank you Rachel. It is good to know that you have been successfully treated for the same problem. Yes the diagnosis was traumatic - The onset of the disease was so rapid and completely out of the blue.
    Anyway I have a couple of positive things to report. The cardiologist tells me that my heart is well up to withstanding further chemo and in fact was not damaged by the previous treatment as I had thought. Also the biopsy showed no sign of Leukaemia so the induction chemo has done its job and put it into temporary remission. Back to the Christie on Monday to begin a lighter regime of treatment to consolidate. In the meantime feeling really well after a week at home!

    Best wishes Gail
  • Gail

    Fantastic news! Please feel free to ask away any questions you may have. I'll be thinking of you.

  • Thank you Rachel! I am a bit of an information junkie and I find there is lots of great information on here and in the Anthony Nolan publications and on Macmillan and Cancer Research UK which answers most of the questions that start with the word 'what'. There is little that answers the questions that start with the word 'why'. I am not a scientist and I quickly get out of my depth digging around on the internet. For instance I asked to see the path reports from my bone marrow biopsies. Even with help from my consultant and specialist nurse (as well as Dr Google) it was hard for me to understand - so trying to articulate intelligent questions about why my bone marrow changes from pre and post chemo and what healthy bone marrow looks like. I can ask high level questions about my treatment but don't feel I am drilling down far enough and don't feel I have enough knowledge to challenge the medics on the detail. I just have to trust which is not a natural state for me!

    Does this make any sense? I guess I am feeling that I am not in control at the moment which is uncomfortable- do others feel the same or is it just me???

    Sorry for rant!

  • Hi Gail,
    I completely recognise this. My job is to analyse complex data to work out solutions and so I thought I could apply the same thought process to cancer. It is great that you have that desire to learn and understand and I definitely would encourage it as you are your own best advocate. One thing I have learned though in the past few years is that with cancer sometimes there is no answer. I remember I had a problem with a BM biopsy once and when I asked the question about what was going on, I got the answer, "we don't know". It was worrying, but refreshing at the same time because it made me realise that some things are still not understood and there is nothing you can do about it. It made me learn that trying to maintain some element of control is good, but trying not to control everything is also helpfuul, because ultimately you can't.
    Sorry, I can't help with any specifics as I have a different disease. I just thought I would reply as I recognised some of the sentiment in your post and I just wanted to let you know I have also felt some of the things you said in your post.
    I am wishing you all the very best with the treatment - hopefully you will be able to get some answers soon - look after yourself as well.
  • Gail

    Rant away it's good to get these things off your chest. I understand your frustration, as Greg says often the medics don't fully understand themselves. I asked how the stem cells got into the bones...the answer was MAGIC when I pressed for a detailed answer, feeling I was being patronized, my consultant said there were a variety of theories but in truth they didn't know.

    One of the hardest things I found about cancer was the lack of control, so I looked at it that I was 'employing' there experts to do their job and as long as the high level made sense I would accept their judgement / guidance after all they are the experts. II also found focusing on the elements I could control helped with the feeling of not being in control, if they said gentle exercise was beneficial I'd do that, eating (even when I didn't feel like it) healthily, trying to maintain a positive approach.

    Have you been offered the opportunity to speak to a counsellor? I was offered this and I found it helped particularly with the lack of control.

    Rachel X

  • Hi Gail,

    I'm also a community champion but haven't checked these boards recently, due to being on holiday, The only extra contribution I can make to this conversation is that I too was an older woman (59) having a so called 'reduced intensity' stem cell transplant - actually a double cord blood transplant as no donor match could be found for me. My illness was different, I had been battling non Hodgkin's lymphoma for years and kept having relapses but despite the onslaught of all the chemo etc I had received, I was considered fit for transplant. It certainly wasn't easy but nearly four years on, I am virtually back to normal, have had very little graft versus host disease and no relapse, touch wood. It was all worth it!

    Good luck,
  • Well done Sue. So pleased for you. Looking forward to being through this time and successfully out the other side. I know it can be done!!
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