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RobA

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RobA
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  • Sorry posted the comment too early. What I meant to go on and say was that I relapsed 18 months after my first stem cell transplant. I underwent a series of DLIs as salvage therapy but these didn't work and in May this year I was given the devastating news that the MDS had progressed into AML. I had one cycle of FLAGIda…
  • Hi Jane, Sorry to hear your news. I have just been through a similar experience. I developed MDS following treatment for AML
  • Thanks for the support Sue and Steve. I will keep you updated on my progress. Yes, a real shock to hear the news. I had absolutely no inkling that anything was wrong. Still, I have now come to terms with the situation and am just keen to get on with the treatment in early January. Third time lucky hopefully!!
  • Hi Martin, I hope the treatment is having the desired effect. I have just been given the same message but 18 months after transplant. I have been feeling really fit and well so the news has really been a bolt from the blue and it has been difficult to take. However I am slowly coming to terms with the diagnosis and now…
  • No problem Leah. My consultant compares recovery post-transplant to a game of snakes and ladders which I think is a really good analogy. Hopefully the dice will be kind to your fiance and he will avoid most of the snakes! My ulcers haven't really affected my ability to eat although initially I did find that certain foods…
  • Hi Leah, I'm now 18 months post transplant and have been suffering from oral GvHD from about Day 90. I have frequent very large mouth ulcers (one after the other) and occasional soreness on my tongue/roof of mouth. I find that I can control my symptoms using a diluted solution of Flixonase Nasules as a mouthwash (although…
  • Hi Dee, I had a sibling allograft back in May last year. In terms of preparation the 7 Steps as suggested by Hayley is a very good reference point. This will tell you just about all you need to know in terms of the medical side of transplant. I personally wouldn't read too much else than that - there is a whole host of…
  • Hi Greg, I had similar issues with falling counts around 4 months after transplant; my platelets and neutrophils were affected. This was at a stage where I hadn't achieved full chimerism so similar to you I did immediately fear the worst. The medical team at The Churchill put the drop to Septrin and my counts did rapidly…
  • I returned to work last September on a part-time basis 4.5 months after transplant, starting at 15 hours a week initially (I'm contracted to do 40) with a full-time return in the New Year. I was fortunate in that my employer has a very good sickness policy with 6 months at full pay so didn't feel under any financial…
  • Hi Becky, Sorry to hear that. I had similar problems with platelets and neutrophils at around a similar time post transplant. My dips were attributed to the effects of Septrin (co-trimoxazole) which can suppress bone marrow function. Are you on this? If you are maybe your medical team could switch you to an alternative…
  • Hi Paul, I think Steve's advice is excellent (as always). I had my SCT at The Churchill in May last year at the age of 47 so a little bit younger than you. My story is that I had AML back in 2011. I had four cycles of chemo and was lucky enough to achieve a complete remission but then in 2014 I was diagnosed with MDS. The…
  • Hi all, I'm now 6 months post-transplant and I definitely feel the cold far more than I used to. I've lost a little bit of weight post transplant which I don't think helps (the insulating layer of fat isn't quite what it was). I've really struggled as the weather has turned colder over the past few days. The effects seem…
    in Day 47 Comment by RobA November 2015
  • Hi Josie, I really hope it turns out to be a false alarm and the marrow biopsy comes back as normal. Good luck on Wednesday. I have recently been through a similar episode of falling counts and am having my 6 month biopsy next week. I was suffering with MDS rather than leukaemia so a different scenario but the medical team…
  • Hi Becky, Wow, that sounds tricky. I agonised for a long time over where to have my transplant done but all of my options were about an hour away so a slightly different scenario. Stupid question but is it essential to have your transplant at Kings? Are there any specific medical reasons for doing this? You are entitled…
  • I've had the results back from yesterday's repeat blood test and the counts remain steady which the team at The Churchill see as reassuring. The message from my consultant is that counts do fluctuate significantly post-transplant and the big problem with doing regular blood counts is that you see this natural variation…
  • Thanks for the replies and reassurances gents. I'm having a repeat blood test tomorrow so I shall hopefully have an update soon.
  • Hi James, I'm experiencing very similar problems to you. I have had persistent mouth ulcers and soreness for the last three months (I'm now Day 150). I was initially told this wasn't GvHD but was instead reactivation of a virus. However over the past few weeks the medical team at The Churchill have revised their opinion…
  • Thanks gents, I appreciate your help. It's good to know this is a transient phenomenon.
  • Thanks to all of you who have commented - I really appreciate your feedback and advice. It's great to get such positive first hand experience of the Churchill - it's made up my mind for me.
  • Thanks for the reply and your useful advice Jayne. I have just ordered 'How the Mind can heal the Body' and I think I will also give the hypnotherapy a go. I read your blog with interest; you've been on an amazing journey!! It's always reassuring to read the success stories; the more I read the more hopeful I feel about…
  • Hi Amy, Thanks for your post. My transplant is likely to be in April so rapidly approaching (this will be a matched sibling transplant). I've really found the site useful in trying to understand and prepare for the whole transplant experience. I fully take on board your point in terms of proximity to the transplant centre.…