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
Excellent! Pleased to hear this.
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 xxx
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 …