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Mandy_22

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Mandy_22
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  • Hi Jane so lovely to see you have posted after quite sometime. I still view the forum from time to time. It’s good to hear your able to enjoy your new life and hopefully you maybe able to plan a little in advance at some point too. However I know it must be more worrying for you all at present with Corvid-19 around so you…
  • 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 ****
  • 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…
  • So glad to hear you are both doing well. Sending best wishes to you Jane ,Christine and Bob! Hope all continues on that steady road to recovery! ❤️ Thanks for your support ****
  • 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…
  • Hi Christine Just a quick message to say we really hope Bob is going on well and making those steps forwards. Hopefully the GVD has really come into play and knocked his disease in to touch! Pardon the term especially as we are in mid stream of World Cup! Sending you both all the very best and hope to see more news in the…
  • Hi Jane, Thinking of you lots and wishing you all the very best for a steady recovery. Hopefully it won’t be too long before you can making your way home. Keep going and we are keeping everything crossed for you. Sending lots of love Mandy
  • 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 Christine oh you poor things!Bob has been going through it hasn’t he!? We do hope he’s getting there and a little brighter maybe? Thanks for speaking about the smell as when we get that far with Sean it will be good to be prepared for it! Sean is having his 4th cycle of Aza this week and 2days next week. He hasn’t been…
  • Hi Jane, just want to wish you the very best of luck for your 2nd transplant journey, Like you say you already know things will be tough but you absolutely sound like a real strong lady and I’m sure you will give it your best shot and come out the other end fighting! Sending all our love xx
  • 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…
  • 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…
  • 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+…
  • Hi Jane, I’m sure you must have many issues racing around in your head at the moment, and it’s totally understandable without a doubt. I do hope everything keeps going well for you and that your team keep you informed and answer all the questions you will have along the way. Yes I can imagine you were surprised on…
  • Hi Christine, So glad to hear your son is getting better and hope all is going ok with the DLI treatment,I can imagine it’s both worrying and a tricky position to endure to want gvhd to achieve gvd , even though that’s exactly what is needed , we wish you both all the best with it. Sean had his biopsy so we are just…
  • 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…
  • Hi Christine thank goodness that Bob has had a promising result with his biopsy test , I’m so pleased for you both. I hope the virus starts to clear soon for him too so he can move forwards again! I’m also happy to hear of your appointment Jane let’s hope that it’s a positive one for you....all the best! My brother Sean…
  • Hi Christine, Brilliant news hope Bob keeps well and all the best for the biopsy and hopefully onto the DLIs for him. I bet it’s a blessing to have him home and you must be a tower of strength for him. Keep positive and pushing forwards. All the very best Mandy
  • 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…
  • sorry continued....I hope everything goes on well with his DLIs and that he gets some well earned respite from hospital soon. My brother plods along with the azacitidine cycles he is due to start his third this coming Monday, then he will have a biopsy so we will all have everything crossed on results day! Anyway at least…
  • Hi Jane, thanks for posting but my message was only partly posted for some reason. Anyway how are you going on? Hope your treatment is not causing too many side effects for you? Did you suffer any breathlessness whilst you were on aza on its own at all? I know each patient is different in not only how the body reacts but I…
  • Hi all, Sean is on rest at moment but restarts his 3rd cycle of azacitidine next Monday. He is going on ok other than loss of appetite, fatigue and most importantly breathlessness! It is a worry to him ( and us all),and hope that this is just a side effect of the chemo rather than anything more sinister of course. So we…
  • Hi Christine, it does sound as if Bob has had so much to content with already! It must be a worrying time for you and with all the adverse weather conditions too must have been a nightmare!! So glad to hear he is getting there through it all though which is great news !
  • Hi Christine, It sounds quite a rough road for your son at the moment, poor sole, but he is pushing through and I can imagine the positivity has helped him as there is a purpose to it all (even though it’s hard!). You yourself must be going through it too as a mother the last thing you want to see is your son suffering,…
  • Hi Jane. I think the fact that Sean had been feeling better regards the fatigue before the relapse and treatment has been a bit concerning though it’s good to know that your team told you that it would maybe take 6-8 cycles to really do the trick, so it’s very good that you are in remission at 5, that must be such a…
  • Hi Steve, Thank you all the positive feed back on here helps a lot,we do appreciate your comments.Sean hasn’t really got over his chemo fatigue which to be honest has surprised us as it is a less intensive one compared to what he has had in the past? I guess you can never tell how it will affect individuals and whilst…
  • Hi Christine, That is brilliant news about your son, you must be extremely happy with how things are going now! Definitely onward and upward for you all. Sending our best wishes to you all. Mandy
  • Thanks again Christine, Your words are supportive and make a lot of sense. It is difficult especially being in somewhat of a limbo situation and just watching my brother trying to manage the side effects of the drugs but we are still very hopeful that it will be for the greater good eventually, so yes I think it is a day…
  • Thank you Christine, I am pleased that your son seems to be heading in the right direction and hope he continues well with his progress. It is a worrying time for all the family but hopefully there will be better news for us in the future too. I’m almost certain my brother has had flag Ida in the early stages of diagnosis,…
  • Thanks again Jane and Hayley, Your words are so appreciated and helpful. I know that each one is so individual and it is very hard to call what the exact route would be, but at least with the information you have given, Sean will be in a better position to ask the questions that constantly go round in his mind I guess. We…