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  • Hi all,
    Just a quick update on my brother, he had been quite poorly last week and had poor blood +liver readings so the aza was put off for a week and he had transfusions, platelets and liver scan. Luckily things seemed to improve again towards the weekend and he restarted the aza this week so at least he will have completed his 3 cycle come Tuesday of next week. Fingers crossed it’s doing the trick.
    He has an appointment with his consultant next Wednesday where I guess they will be arranging the bone marrow biopsy as he did say they would do it after third cycle.
    So onwards moving forwards with the hope that the results come back positive.

    All the best
  • I am sorry to hear this...but glad the Aza has started again. Hope the results continue to improve. Thinking of you of course. Take care and I hope you both manage to have a happy and relatively healthy Easter. Best wishes, Jane
  • Hi all,
    Just another quick up date regarding my brothers treatment, we spent most of the day at hospital on Tuesday where Sean had his bone marrow biopsy done (which didn’t take all day) but had to have platelets and bloods. He is feeling the benefit of it at the moment which is good to see.
    We await his appointment for next week sometime to hear results! Let’s hope it’s good news then they discuss the next stage of treatment!
    Best wishes to all
  • Hi all
    Unfortunately today we had news that my brothers bone marrow biopsy shows he’s not in remission and has a small increase in leukaemic cells, so as you can imagine it’s upsetting and definitely not the news we wanted.
    He hasn’t seen his consultant as yet,but an appointment has come through for next Wednesday ( 2+ weeks after biopsy).
    I was just wondering if there is anyone out there that has had relapsed AML and received Azacitidine cycles, how many did it take to get into remission ? Or any professional that can shine any light on this situation for us?

    Many thanks
  • Hi Mandy, I am so sorry that Sean did not get good news from his biopsy. I feel for you both, it is what we all dread to hear. I don't know whether this will help you, but I had AML and had a stem cell transplant in 2015. I relapsed last August and have since been on azacitidine. I was found to be in remission after 5 cycles, although I had initially been warned not to expect it for 6-8 cycles.....as it often took that long to work. I cannot remember how many cycles Sean has had. Try to stay positive...(I know it's not easy, but worrying without all the facts is not a good use of precious emotional energy I have found......). When you see the consultant, he/she will be able to give you a better idea of what is going on and hopefully have good options for your brother. Do keep in touch. I know there's not much we can DO as such, but just so you know there's folk thinking of you as you go through this. Lots of love
  • Hi Jane, thanks for your reply and I do take on board the staying positive and waiting for facts before worrying too much.
    Luckily for Sean he has managed to have a meeting with his consultant this morning and has had some fears clarified so even though he hasn’t got any false hopes the plan is to carry on with the Aza for 3 more cycles and they will take a more in depth look at his Flt 3 mutation and maybe take another approach towards that.
    We are not jumping for joy but moving forwards cause there’s still a plan set so we have to go with it.
    Probably next week Sean will hear more about start date for Aza etc...but at least the bank holiday isn’t going to feel like such a long wait now.
    Thanks again Jane hope your feeling well and enjoying your free time at the moment. All the best for your future treatment+ stem cell transplant.
    Love Mandy
  • Hi Mandy
    I am sorry that the response to the Aza hasn't been as good as hoped. Sean is only half way through the treatment and it can sometimes take a while to work, so I am not surprised that the consultant wants to carry on with another 3 cycles. The positives are that the chemo has kept the disease under control and he has been relatively well so keep going.

    You are always so positive and I am sure at times it can be hard, but you are a close family and you support each other and that is so important. If you or Sean feels like they need any support you must ask either his nurse, consultant or your GP. You are welcome to call me anytime my number is 0207 284 8229.

    Keep us updated and please send my best to Sean.

  • Thankyou Hayley,
    Yes we are only half way through and hope that it will do the trick after the next lot! It’s definitely worth going on and trying to get the results that we need. He hasn’t always been very well throughout the aza but he has to push forwards with it and hopefully his body may get a little more resilient to it as he goes along ?
    It is a positive that the chemo has kept it dampened down so let’s hope that the next lot will manage a remission.
    Thankyou so much for your information,advise and offer of help. We really appreciate it and may take you up on that along the way.

    Much appreciated thankyou
  • Mandy , so sorry to hear your news and my delay in noticing your news .
    It’s hollow and gut wrenching when you hear news like this I hope you’ve all managed to consolidate and move forward to the next cycle ...much love Christine x
  • Thanks Christine, don’t apologise you have had enough on your plate! We will push forward and move on and hopefully there will be better news in the future! Keep focused and hopeful! All the best Mandy xx
  • Hi all,
    It is with great sadness to have to write this, I’m afraid Sean (my brother) lost his battle with AML on Monday 22nd October.
    As you will see he had fought this long +hard for 2years and you would never hear Sean moan or say ‘why me?’ as long as there was hope he continued like the hero he was.
    Unfortunately Sean’s disease had the added complication of having the flt 3 mutation so it basically made it more difficult to get on top of.
    We would like to thank Professor Craddock and all the team at the Centre for Clinical Haematology Queen Elizabeth Hospital for their excellent care Sean received throughout his time with you all. A special thanks to Naomi Sean’s specialist nurse for all of her help and support she gave to Sean and us his family.
    To all of you that have commented on my posts thankyou especially Jane,Christine + Steve.
    Keep going all! You can beat this and one day it could be a disease of the past!!

    Love to you all
    Mandy xx
  • I send you my love Mandy ...what can I say? I am so very sorry to hear your news. Thankyou for your part on this forum. You have been a blessing even in your own struggle.
    Thinking of you and your family . Jane x
  • Oh no Mandy, I'm so sorry to hear your sad news. We've all watched the progress that Sean has been making and the setbacks he has encountered. There's no doubt he has fought this with all his strength and it must be such a blow that he lost his battle after all this time.

    I remember meeting you and your mum at one of the Anthony Nolan information days just before Sean had his transplant and your strength as a family supporting Sean was there then and has been throughout since then on this forum.

    I send my thoughts to you and your family at this sad time and thank you for keeping us up to date throughout.

    Kindest wishes,

  • Thankyou both so much. Yes Sean did do his absolute best to overcome all the treatment and set backs but unfortunately with his extra complications of having the Flt 3 mutation it made the job a lot more difficult to combat. He was my absolute hero!
    We will be laying Sean to rest tomorrow but the absolute floods of messages and letters of admiration for him will carry us through the day hopefully.
    Yes Steve we remember it well and thankyou for your support and kindness shown. Also Jane I hope your recovery continues well and you enjoy your health.
    Sean would have wanted us to pass on his best wishes to all of you on the forum and to tell you to keep pushing forwards to hopefully make steps in the future so that we can put them into the past one day ❤️
    Sending lots of love
  • Mandy,
    I am so sorry to read your news and my sincerest condolences to you and your family. Through the past 18 months I feel like I came to know Sean a tiny little bit through you. He was incredibly brave to go through everything he went through and I could see how much support and love you had for him. It absolutely shone through in your posts and so I am so very sad that it didn’t work out as everyone on here was wishing and hoping.
    I am sending you loads of love and strength for the road ahead.
  • Mandy , I am so so sorry to hear this thank you so much for having the strength to share this my thoughts are with you all much love ****
  • Thankyou all so very much. We wish you all the very best for the future. We found this place a great help when times were not so good and you all showed great strength and support. Keep well all, love Mandy ****
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