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  • Hi Steve Thank you. I think its positive I was expecting a date or time frame but I will ask to see if I can have mote frequent blood tests - they are currently every 8 weeks and just wait for the decision from the panel. I am sure they will be mindful of transplanting me in the 'window" of time.
  • Hi I had my addenbrookes appointment - I was expecting to be given a time frame however the consultant said even though my molecular results showed another mutation in my cells my bloods were stable in January and today and as I am fairly well in myself he is of the mind to watch and wait for a little bit. He is referring…
  • Thank you Steve
  • Hello I have my addenbrookes pre transplant appointment on Thursday where I will discover if my non related matches are a possible donor and my latest bone marrow dna cells testing. I was told last year I would need stem cell transplant this year and I am extremely anxious as I feel quite well in myself. Any tips please
  • Hi I understand that I will need a dental check up - I cannot access a dentist and its not for want of trying and trying and trying. I moved here in 2020 and havent been able to get on anyone's books. I am sure I read somewhere that the hospital or trust could sort this for me ? Is that the case ? Thank you
  • Thank you so much Michelle
  • My last appointment in October I was told there were 7 donors who were a 10/10 match and that Addenbrookes would be following them up so that they had a donor in place to tell me at my appointment in March. I had a bone marrow biopsy in December and Addenbrookes should have those results including the dna results for my…
  • Thank you Michelle - its quite a minefield isn't it. So you were actually 2 months later than planned. I am just thinking that if I have a say in the time frame it would be better to have the transplant as soon as my son has finished his Gcse's in June as he wont be starting college until mid September. I would rather…
  • Thank you have have applied for some information leaflets wgich I hope will answer a lot of questions. I am wondering what to expect from my addenbrookes appointment. Since my last appointment I believe they had been getting in touch with my possible unrelated donors. If one is suitable I believe Addrnbrookes need to…
  • Thank you Michelle and Tom - I will have a look on those links suggested. Thank you
  • Thank you Michelle x It seems I have a lot to learn still. What does neutrophil mean before and after please
  • Hi thank you for all your replies, they are much appreciated and are helping me navigate my way around this. Am I right in thinking you can be in hospital anything from 3-6 weeks for the transplant then spend 100 days quarantine at home, with frequent trips back to Addenbrookes (transplant hospital) about 3 times a week…
  • Thank you so much Steve - I feel supported on this forum and feel I have a place to go with any anxieties. It is good to hear that post transplant most patients recover well as the 2 people I personally know have both died post transplant and were younger than me. It makes me anxious about having transplant in the first…
  • Thank you Michelle for your advice - I think I will write down some questions ahead of my addenbrookes appointment. I will look at the booklets that may help my son too. Thank you so much x
  • Hello my name is Sarah and I have myelofibrosis and have been advised that bone marrow transplant is my best treatment option due to high risk factors of developing leukaemia. I live with my 15 year old son whose best friend of 12 years died from leukaemia post stem cell transplant. I am extremely anxious about the whole…