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Hayley_Anthony Nolan ·

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Hayley_Anthony Nolan
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Comments

  • Hi I am the nurse specialist in patient services, thank you for posting. Prior to the donation all donors have a very strict medical and are screened for viruses and anything that could potentially be passed on to you. Anyone that is a risk to you …
  • Hi Thanks for posting, I am the lead nurse at Anthony Nolan. It does take time to identify and work up a donor and I would say 4 weeks would be the minimum amount of time. The reason being that once the donor is identified they then need to have a …
  • HI Shell Thanks for posting, I am the lead nurse in patient services. I am sorry that you husband needs a transplant, it can be an anxious time with lots of information to take on board, try and take things as your own pace and one step at a time. …
  • Hi Lindsay Thanks for posting, I am the lead nurse in patient services. I am sorry that your husband needs a transplant. It can be quite overwhelming when you are told that you or your loved one needs a transplant and it can be easy to want to find…
  • Hi Thanks for posting, I am the lead nurse in patient services, I am sorry that you feel so anxious about your counts. They sound entirely normal to me, its so early after the transplant we wouldn't expect such high platelet counts and this would h…
  • Hi Thanks for posting, I am the lead nurse in patient services. I am sorry that your wife needs a transplant. As you have read from Tony a 9/10 is perfectly acceptable for a transplant, there might be more GvHD which can also mean graft versus le…
  • Hi Rachel Thanks for posting, I wanted to add that treatment is started when EBV is low level so it is early enough to not cause serious complications. Although it is not common to reactivate at 2 years post transplant it does happen and I have had…
  • Hi I am the lead nurse in patient services, thank you for posting. It can be difficult caring for someone after a transplant as some days will be better than others and progress can be slow. This is often frustrating for the patient and it can be a …
  • Hi Gail Thanks for posting. It is difficult to say what the cause of the anemia would be, it could be the blood group mismatch as the type of mismatch that you have can cause problems with red blood cell engraftment. It could be the amount of treat…
  • Hi Nick and Meerkat Sorry for the delay in response. Thank you Nick for posting, its great that you have shared your experience and it has raised a question about vision impairment. Yes vision disturbances can be a symptom of AML and ALL, but its n…
  • Hi Mandy The decision will be be very individual to Sean, it will depend on his level of relapse, time from transplant his response to the Aza and general fitness. He could get in to remission with the Aza and DLI without a second transplant but th…
  • Hi Cath Thank you for posting, I am the nurse specialist in patient services. Having to decide if and when to have a transplant is a very difficult decision to make, especially when your husband has been so well. Everyone's experience is different…
  • Thanks for the update Kitty and i am sorry your husband has not had a good week. Unfortunately GvHD can flare up and when it does medications sometimes have to be increased or new drugs added in. Tacrolimus is another common immunosuppresive drug li…
  • Hi I am the nurse specialist in the team, thank you for posting. I think the responses cover this very well. I would say that everyone is different and it would be hard to say if your daughter would mange the stairs at 2 months post transplant. Fat…
  • Hi George Thanks for joining the forum, its great for you to share your experience. I am the lead nurse in the team and occasionally contribute. You will get lots of support from all the members on here which I am sure you will find helpful and les…
  • Hi Christine Thank you for the update. It will be a worry for you and your son that his counts are slow in recovering but he has had a lot of treatment, his bone marrow has had a lot to deal with and this can slow down count recovery. It is normal…
  • Hi Kitty Thanks for the update, glad everything is going well. Cyclosporine can upset organs like the kidneys and liver and when it does it does need to be stopped to prevent permanent damage. It is a bit of a shock to his system to go from 70mg tw…
  • Hi Pam Steve has covered this really well and all I want to add is that it is still early and its normal for the chimerism to fluctuate slightly. Its excellent that his chimerism is 100% but if this dips to say 95% over the next few months that is …
  • Hi Alison I am so sorry, I cannot imagine your devastation. You have both been through so much and you are completely right life is unfair. There is nothing that I can say that will make this better, this is the news that everyone dreads but I am h…
  • Hi Mandy I am glad that it is becoming a bit clearer for you all, its a lot of information especially when it comes as a shock. After 3-4 cycles Sean will probably have a BM to assess how he has responded so they will keep an eye on that rather tha…
  • Hi I am the nurse specialist in patient services, thanks for posting. As you have not been directly exposed then I do think it is unlikely that you will catch chicken pox but I do agree with Rachel in that its best to speak to your transplant team …
  • Hi Christine Thank you for posting, I am the nurse specialist in patient services. I am very sorry that your son has relapsed just short of a year, it must be very hard to have had another Xmas with him in hospital. I hope that both Rachel's suppor…
  • Hi Mandy I am so sorry that your brother has relapsed, this must be very difficult for you all when he was doing so well. Like Jane there are people on the forum who have had similar experiences and I have worked with patients in the same position.…
  • HI Alison I am sorry that your husbands platelets have dropped, I realise that when he has been doing so well it can feel like a bit of a set back when counts change. In terms of a transplant he is still early, he is less than a year and his immune…
  • Well done Steve, this is a very deserved award. Your constant support and insight in to the patient experience as well as your wise words of advice and encouragement are essential to this forum. So many patients and families have benefited from your…
  • Hi Pam Thank you for posting. I am so sorry that you are both in this very difficult situation, it must be unimaginably hard and I would strongly suggest that your husband receives some psychological support. Like Pam has said patients shut down at…
  • HI Gill I am the nurse specialist in the patient team, thank you for posting. You are right, cataracts are a common side effect after transplant and can happen at any time. The treatment that you receive with the conditioning including radiothera…
  • Hi Rusty I am the nurse specialist in the patient team, thank you for posting on the forum. This must be a very difficult time for you and your husband. Although your husband is 3 months post transplant and doing well, he is still early post tran…
  • Hi Pam I am the specialist nurse in the patient team, thank you for posting. It sounds like your husband has had a very difficult time, its no wonder that he feels tired as I am sure you do too. Both Steve and Rachel have offered really useful ins…
  • Hi Jackie I am glad that you have found this forum helpful, posting questions, expressing how you feel and sharing experiences is exactly what this forum is for, so keep doing that. Its ok for you to feel like you are struggling, that's normal. Of…