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New Community Champion
Hello
I’m Rachel a new Community Champion. I was diagnosed with Acute Myeloid Leukeamia in 2015, after the initial chemotherapy I underwent a SCT. As neither of my siblings were a match Anthony Nolan was contacted and a match was very quickly found. Unfortunately, the SCT didn’t take and it was decided I required a second SCT. Many of the key aspects relating to the second transplant were altered, including the donor. There was no concern about the first donor, the medical team decided, as I was particularly fortunate to have more than one match, that along with a change in the chemo regime and some medication they would try a different donor. The failure of the first transplant not going to plan was a tremendous set back but that is all it was, a set back, I’m pleased to report I’m now, 100% donor.
I have experienced skin GvHD which has cleared up and I currently have mouth and eye GvHD. Personally, I find GvHD a mixed blessing, on one hand it’s a fabulous sign regards the long-term outlook of the transplant but on the other hand, it can be annoying. The days it aggravates me, I remind myself it’s a small price to pay and it will eventually disappear, it’s certainly not holding me back from living my life. After the second transplant I decided to try to make silk purse out of a sow’s ear by putting into place several life changes. I moved to a part of the UK I have always yearned to live in, because of the move I have adopted a different and more rewarding lifestyle which I had previously only dreamt of.
I look forward to helping support others, as I am unmeasurably grateful to all who helped me during the most challenging, physically and mentally, two years of my life. I experienced darker moments than I could previously have imagined but without the dark we’d never see the stars. I surprised myself by getting through that period, I’m stronger for it, I’m a better person for it and I’m now able to give others the support they may need to get through similar times. I’m grateful for all the help I had from the NHS, Anthony Nolan, my wonderful donors, family and friends.
Rachel
I’m Rachel a new Community Champion. I was diagnosed with Acute Myeloid Leukeamia in 2015, after the initial chemotherapy I underwent a SCT. As neither of my siblings were a match Anthony Nolan was contacted and a match was very quickly found. Unfortunately, the SCT didn’t take and it was decided I required a second SCT. Many of the key aspects relating to the second transplant were altered, including the donor. There was no concern about the first donor, the medical team decided, as I was particularly fortunate to have more than one match, that along with a change in the chemo regime and some medication they would try a different donor. The failure of the first transplant not going to plan was a tremendous set back but that is all it was, a set back, I’m pleased to report I’m now, 100% donor.
I have experienced skin GvHD which has cleared up and I currently have mouth and eye GvHD. Personally, I find GvHD a mixed blessing, on one hand it’s a fabulous sign regards the long-term outlook of the transplant but on the other hand, it can be annoying. The days it aggravates me, I remind myself it’s a small price to pay and it will eventually disappear, it’s certainly not holding me back from living my life. After the second transplant I decided to try to make silk purse out of a sow’s ear by putting into place several life changes. I moved to a part of the UK I have always yearned to live in, because of the move I have adopted a different and more rewarding lifestyle which I had previously only dreamt of.
I look forward to helping support others, as I am unmeasurably grateful to all who helped me during the most challenging, physically and mentally, two years of my life. I experienced darker moments than I could previously have imagined but without the dark we’d never see the stars. I surprised myself by getting through that period, I’m stronger for it, I’m a better person for it and I’m now able to give others the support they may need to get through similar times. I’m grateful for all the help I had from the NHS, Anthony Nolan, my wonderful donors, family and friends.
Rachel
Comments
As I'm sure you've seen the forum is a great place to be and it's so rewarding as a champion to be able to support others get through what we have. You will have some things in common with me and the other champions and some things that we have not experienced, so between us we can hopefully help people who are concerned about the things that are happening to them and reassure them that they are not alone.
I also had acute skin GvHD and I had a similar outlook on it in terms of it being an inconvenience but a positive in terms of it keeping my Leukaemia at bay, and of course much better than the alternative!
I know several patients on here are facing second transplants or top ups so your insight in that area will be invaluable.
You are so right about making life changes as a result of your treatment. It certainly gives you a new perspective on life and makes you value things more. Whilst my life has returned to normal in terms of work and family life now that I'm over 4 years post transplant, I savour every day and try not to let unimportant things get me down.
Once again welcome on board and I look forward to reading your contributions in due course.
Steve
thank you for this post. My daughter’s graft has failed and we are devastated. She is facing a second transplant and your text has given us hope. It’s such a difficult time and every positive post helps so much .
HI Auds21.
I'm sorry to hear of your daughters graft failure and can appreciate how worrying it is for you. I hope you'll find some support here on the forum as there are many here who have experience of your daughters situation.
Graft failure is more common than you might imagine and it does happen, so your daughter is certainly not alone. As you can see from Rachels post it is possible to have a second stem cell transplant or a top up of cells (DLI) to kick start things and this gives patients another chance. There are a number of threads here on the forum from other patients who have gone through stem cell top ups of second transplants and have had succesful grafts.
Please have a look at some of the other posts which I hope will give you some assurance. I know it will be hard to see her going through the same, but hopefully it will help you come to terms with the situation and reading other peoples experiences may help give you some comfort.
If you need additional support beyond that your daughters medical team is giving you can contact the Anthony Nolan team directly for additional advice.
Best wishes to you and your daughter,
Steve
Hi Rachel
It has been great to read your post and welcome aboard. My name is Michelle I am also one of the online community champions
Like you my first SCT failed and I had more than one match. My failure may have been a genetic fault as it failed almost immediately. Pleased to say I'm now mostly donor and I'm now 3 years post second SCT.
Auds21 I am sorry to hear of the difficult journey your daughter is currently facing. I empathise with the anxiety and fears you are all facing. I am.pleased to read that Rachel's story has given you some hope please post here if you require support.
You can always reach out to the Anthony Nolan emotional support team on 03033030303 or at [email protected]
Best wishes
Michelle
Thank you so much for your kind supportive comment, Steve, Rachel and Michelle.
my daughter was doing so well at 100 days post transplant. Then she began to deteriorate . This was after her first covid jab and the specialists think that this could have caused the rejection of the transplant.
my younger daughter is a half match and hopefully she will be able to donate her cells as the original donor is unavailable.
Hi Auds21,
I'm Rachel- Lead Nurse here at Anthony Nolan. I'm sorry to hear that your daughter has had this complication arise, it must be a very difficult time for you all. Unfortunately graft failure is a risk associated with stem cell transplant and whilst not very common is something that can occur, often with no explanation.
I understand that you will be trying to understand why this may have happened in your daughter’s case and, if it has coincided with the timing of her COVID-19 vaccination, why you might make that link. You mention that her clinical team may have posed this as possibility.
No research has been published which has found any link between graft failure and COVID-19 vaccination. The timing of vaccination post stem cell transplant is set within a medical document called the Green Book for optimum immunity, to reduce the risk of COVID-19 illness. Within this guidance there are lots of references to evidence which supports the timing and number of vaccinations needed post transplant.
If you would like any further support or have any questions about the next steps for your daughter’s treatment and possible second transplant, please do get in touch with our Patient Services team here at Anthony Nolan, you can contact us on our telephone line (Mon-Fri 9-5) 0303 3030303 or by email at: [email protected].
Best Wishes
Rachel
Hi Rachel. Thanks for your detailed reply.
I will contact the patient services team.
Best Wishes