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Mandy_22
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Hi Jane, Thanks for getting in touch. It must be so difficult for you to be able to come to a decision of which way to go when there’s no guarantees, but hopefully whichever one you go with will be the right choice for you Jane. I will apologise now but i understand only parts of the procedures, and I was wondering is…
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Thanks Steve, I did take a look at links and found them helpful Much appreciated Mandy
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Hi all, Just wondering if there is anyone out there that has been down the route of azacitidine chemo cycles, and hopefully if that works then on to DLI’s, whether after that the plan would be then be on to 2nd sct eventually or can it be possible to get into a curative position with just DLI? Or maybe it’s a higher…
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Thanks Steve, Yes definitely moving forwards day by day is the key! He is amazing to be fair, I am so proud of my brother! I am glad he has respite now though for a while it will give his body chance to recover a little. I hope your keeping well too! Thanks again Steve
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Oh that’s brilliant Jane so pleased for you that it’s having the desired effect on your illness! To have a moving forward plan is fantastic I bet? I know it’s all the uncertainty with every step but hopefully you will be able to enlighten us with your experiences along our path maybe? Sean is doing great to be honest he’s…
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But it’s all about it working, is what he says, and that is so true!! He is doing so well, actually amazing, he is so grounded, which in turn keeps us going to support him, which is the main aim! He has a few weeks off now which I’m glad about! All we are hoping for now is that he can get into remission to be able to again…
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Hi all, Well my brother is at the end of his first 7 days of azacitidine chemo and he has a bruised and sore belly
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Thanks again Hayley, That’s very informative as it does give us more of an idea of what to expect. I will tell Sean what you have said and give him your number too thank you. Kind regards Mandy
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Hi Hayley , Thank you for your advice I think we have most of the procedure in our heads now hopefully! It looks like his treatment starts sometime next week and I think he is down for 6 cycles of azacitidine. Are we correct in thinking that there won’t be tests along the way to determine if it’s managed remission for him?…
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Thanks again Jane, yes I understand what you mean it’s a long process with no indication of how things are actually going which must be a little frustrating and worrying at times, but it is good way to look at things from the perspective of the ‘here and now’ I think. I hope you go on ok Jane and get the results needed…
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Sorry seems only part of my message appears! Jane it is reassuring that your going on well with the azacitidine treatment and are generally having fewer problematic symptoms than other chemo as you have all been through enough already. I hope that your progression continues to be a good one and that my brothers experience…
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Thanks Steve and Jane, We appreciate your help and advice
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Hi all, Unfortunately on our return to clinic today for results my brother has 9% of leukaemic cells back, so it’s not just the blip we were hoping for! We have to go back next week to go through the plan but it looks likely that he will be on azacitidine to try for a remission again and then DLI afterwards? Just wondering…
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Hi Steve and Greg, Thanks for your information it’s very helpful to get different perspectives on it all! Yes hopefully just a blip with having the immunisations etc. They have got him in today for a bone marrow test so they are taking no chances which is good! Unfortunately then he will have to wait a long week to get…
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Sorry all my auto correction must have clicked in without me realising! Meant to start by my brother has been doing great and he is 8 months post transplant!!
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Hi guys, it’s been awhile and my months post Everything has been absolutely spot on to be honest, he’s been back at work,building up energy and strength bit by bit,all his counts have beeen very good which has been fantastic however last tests his platelets have suddenly dropped to 26!! All his other blood numbers have not…
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Thanks Hayley Yes he is still doing fine and it's day 124 today so your right about 4 months post transplant. We are still in early days stage yet I guess but we are very pleased how he's recovering, and it's lovely to hear he can go and do a little bit at work now and again ( which helps him get some normality back!)…
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Hi Steve, thanks so much thats what we think too! It does seem very quick to be off it already doesn't it? However the team are really happy with his progress so even though we can't get ahead of ourselves as we know how things can change quickly along the journey we are indeed hoping that he reaches a full recovery in the…
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Hi all, Just a quick update my brother is completely off cyclosporine now so we are all hoping that nothing major starts off and keeping our fingers crossed of course but I was wondering if this is the time when there is a higher risks of complications and if anyone out there experienced any particularly around this time?…
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Thanks Greg, we are very aware that we are not out of the woods by any means but it is just good to hear some more positive news
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Hi all well my brother is still doing well..... bit of an understatement really, he's doing great! This week he has had results of first bone marrow after transplant and he is in remission which is brilliant news to hear
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Thank you Greg Steve and Hayley, Indeed the time seems to be whizzing past quite quickly now and we are so glad he is still heading in the right direction thank goodness
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Hi all, My brother is still doing really well generally and quickly moving towards day 80 shortly, which is good news! His medical team are now reducing his cyclosporine quite rapidly which is also good however it still leaves us wondering how other peoples experienced this time, regarding onset of gvhd etc? If anyone has…
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Thank you Nichola and Hayley some very helpful tips from both of you. My brother always appreciates the input. He is back behind the wheel and it is good that he can get that independence back
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Thanks Greg That's much appreciated again thank you. It sounds like you have to use common sense with situations and rely on the team to offer advice regarding individual circumstances. My brothers work involves being in contact with quite a large number of the general public so I think he needs to air on the side of…
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Hi again all, My brother is still doing well Day 55 today and no major issues to date so all heading in the right direction so far! We were just wondering if anyone out there has views on when they began to feel more comfortable about getting back into society and being around general public again? Also did anyone have any…
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Thank you Steve and Nichola You both have reinforced what I have thought about having to take it slowly(which I'm sure is frustrating for my brother) and listen to your own body as over doing it won't help long term and actually may set him back. I'm sure he will get back to his level of fitness eventually but I do also…
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Hi Hayley Thanks so much for your advice too it's really helpful and although my brother is very knowledged about all aspects of his condition and treatment it does indeed benefit him to be able to contact real people and professionals so thanks for taking the time to write as we know how busy you must be, really…
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Thank you Greg and Steve It is really beneficial to hear your experiences. We are aware all are individual and the course along the road to recovery can change in various ways many times. However we appreciate you valuable input and I will be relaying to brother your points and how it is important to ask his team on…
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Thanks Steve, Talking of ciclosporine is there any connection with immune suppression drugs reduction and stage of recovery or does it not play a part at all as my brother has now been reduced to 100mg twice a day and on day 35 ? Basically is that a good sign or nothing to get too excited about because it's very normal for…