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Relapse AML , second transplant .?



  • Hi Christine, thanks for your updates.

    At this stage it's so easy to pick up a bug and it's sometimes difficult to avoid them, particularly if those close to the patient are affected. I think the main thing is that these things get dealt with quickly and whilst it can be perturbing at the time it should hopefully only be short term and he will soon be back on track.

    The preliminary results sound promising if his chimerism is at 100% so lets hope the detailed results show the same and that his levels now stay there.

    All the best,

  • Thanks Steve appreciated , the roller coaster continues for sure but he’s on track . I hope all is well with Mandy and Jane and that your doing well too. I keep this thread going to bring hope to others it’s a tough ride but can be done Much love Christine
  • Detailed results from bone marrow show no disease phew , so discharged today now just to get over the last virus and associated problems and onto donor lymphocyte infusion to boost ...fingers crossed and so the wheel turns . Much love to all x
  • I have only just caught up with your news Christine. So glad that Bob has recovered...or is continuing to recover (it can take a while!) from the virus, it's something we all dread really I think. But what wonderful news about the chimerism. So pleased for you both. I am well, thankyou. I have begun the pre-transplant tests and have an appointment next Thursday to find out whether the doctor thinks the transplant is viable for me. I am now planning to "shelve it" and enjoy the week!! That's the plan. Will let you know.
  • 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 has his biopsy next Tuesday so we are all hoping that results come back good.....fingers crossed!!
    Love Mandy
  • Hi All, Mandy and Jane particularly I hope the bone marrow went as planned and fingers crossed for positive results for Sean . What great news Jane let’s hope all goes well in your tests to come .
    My son was discharged as I said unfortunetly he had contracted CDiff in hospital and was becoming quite unwell at home we’ve battled through and he’s getting better this is one roller coaster I’d like to stop ...
    Off to DLI tomorrow we have to travel 60 miles to Plymouth the pleasures of living in Cornwall he’s bloods were ok today so all systems go . All a bit daunting because they need to see some GVHD to achieve GVD just have to keep fingers crossed it’s managable and not to bad ,
    Hope your keeping well Steve and Rob much love to all Christine x
  • Yes, I find this aim to achieve "just enough" GVHD really scary. I had virtually none last time (which at the time I was pleased about of course!) so I know I need some. But then the possibility of long term problems comes up and I think particularly of my husband if this becomes chronic. At the moment we approach it as a big, temporary hit on the leukaemia with hopefully an end somewhere along the line. Do keep in touch about progress. This is really helpful if you feel able to. Thanks, Jane.
  • 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 waiting for appointment for next week to discuss next steps, so he maybe down the exact same route as your son soon.
    Anyway take care, especially along with your lengthy journeys to the hospital too!
    All the very best
  • edited July 2018
    Hi All bit of a update , unfortunetly Bob my son contracted C Diff when last in hospital took a while to shift and wasn’t pleasant but it was thought to be clear so DLI was done on the 25 th brothers cells infused . Crikey doesn’t it smell when they have been in the bank our first experience of the preservative being used as he’s transplanted cells were fresh . Old smelly sweet corn just what you need for a couple of days but a small price to pay ....Well that was over two weeks ago told to expect GVHD in some form it’s really finding the balance against the disease . Last Tuesday Bob wasn’t right loose stools again liver function off long story short became quite unwell now in hospital being treat for both acute GVHD of the gut and C Diff the jury is out whether it’s both or which but in truth I think they believe it’s both . Steroids and treatment for C diff and drinking only clear fluids no diet bless him he’s no weight at all ...but he’s feeling better just ....the roller coaster keeps rolling ...
    I ve just caught up on threads keep in touch Jane , Mandy , Rob much love to all the fight goes on 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 so well to be honest but we are still hoping things will pick up again soon so that he can get the remission he needs and move on to DLIs too!
    I really hope Bob goes on well and continues to improve with everything. Gosh you all deserve so good news soon. Keep the fight going! Sending all our love xx
  • Hi Mandy and all Bob has had some good times of late moved off the C diff finally all good fingers crossed heading for second DLI as a little GVD in the mouth but not enough really to determine the Graf element against disease ...awful wanting more but there it is .I hope Sean is getting there and that things have begun improving for him too lots of love to all x
  • Hi Christine, I found out today that I am following in the same footsteps and again fighting aml. I am a little closer to transplant, at just over 4 months, so it’s a little trickier, and I won’t be allowed a second transplant unless something amazing happens. But am starting flag Ida this week followed by DLI so have read your thread very closely. Hope all is going well, it’s giving me hope in what at the moment seems like a very dark place.
  • 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 future Mandy xx
  • Hi All, Bob my son continues well in remission kicked the c diff into place well the vancomycin did that really . He went to the Ed Sheeran concert recently visited family and is looking at buying a classic car so far so good fingers crossed . He has some GVHD in the mouth not much but then using steroid mouthwash so hard to know how much is enough . They may hold off the second DLI though if it’s enough find out Wednesday .
    To cellbydate sorry don’t know your name so sorry your relapsing so close to your transplant it’s a very scary place to be as you see from the previous posts the chemo rounds were tough my son had issues for sure but he got back into remission keep your head up and remain hopeful if you can
    Thanks for your thoughts Mandy how are things for you with Sean hope all is good for Rob , Jane and Steve .....thinking of you all .
  • It’s been a while but I thought I’d give an update Bob continues to be well
  • Thinking of all those going through tough times particularly Mandy with Sean , Rob Jane and Steve .
    Bob continues to be in remission long may it continue
  • He has a new cockerpoo puppy , enjoying life concerts , gaming , visiting Alton towers today ...., wants to help with children with this condition ...discussion constantly undertaken re GVHD is there enough against the disease he has some in the mouth and throat ....only had one DLI two years Dec post transplant edgy times this time of year was in hospital last two Xmas,s ! Fingers crossed
  • I've just been catching up on this thread and I wish you all well on your journeys. Great news to hear Bob still in remission, enjoying life. Long may it continue. I am now 5 months post transplant and beginning to feel a little more 'normal' than 'sick'. I have been told I don't need to go back to hospital for FOUR weeks! Really exciting. I do struggle with a persistent cough and need to go to a respiratory clinic to see why. They don't think it is cancer related but clearly linked with transplant as I had no trouble like this before. But having been through quite a low time recently, am beginning to see ahead a bit. Thanks again everyone, the support I receive here is so valuable.
  • 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 ****
  • Jane is so nice to hear your doing ok and thanks for the supportive message Mandy , it’s not easy at any time all this is it much love
  • We’ve been shocked silly after routine appointment today we’ve been told Bobs relapsing again blasts evident ....seriously .....this disease is so cruel he’d been doing so well ....will know more from Monday .....hope everyone else are doing well ....confused and upset ......but the fight goes on ....
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