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Hi from Scotland
Hello
I'm new to the forum, diagnosed with AML and MSD last July. I have had 2 rounds of chemo at the Beatson in Glasgow and am in remission but waiting for a SCT. I have been told I am difficult to match, but I don't know why so waiting is making me very anxious. My daughter is going for further tests this week and may be the preferred donor, I'm not sure of the implications of a half match. Maybe the waiting will be over soon!
Has anyone experience of QEUH Glasgow? Tips appreciated!
Sue
Comments
Hi Sue, welcome to the forum and thanks for postin. I'm one of the online community champions here and I had a SCT for ALL over 9 years ago.
I'm sorry to hear of your diagnosis but it's good to hear that you are in remission. I guess it's a cse of waiting to see if a match can be found and i can understand your anxiety. My sister was tested to see if she was a match but wasn't unfortunately, but a donor was found for me and I had my SCT just over 3 months after I started transplant, so hopefully a match will be found for you soon. In the meantime please encourage as many of your friends and family to register as you never know whether one of them couldf be a match.
Your daughter will be a partial match as she will share her DNA between you and her father. I'm not sure of the implications of a half match but I'm sure your transplant team will only proceed with it if it has a high probability of being successful. Hopefully a 10/10 match or close to one can be found for you from one of the registers.
How have you found your treatment so far and how are you feeling at the moment?
Steve
Hi Steve
Thanks for the reply. I'm doing well physically, just the anxiety getting to me a bit. I had Vyxeous chemotherapy at the beginning of August and October and spent 5 weeks in the Beatson each time. The first round didn't put me in remission but the second one did, unfortunately leaving my marrow damaged causing platelets to be low ever since.
Initially I was told it was unlikely I would need a transplant but by early December that had changed to definitely needing one! My sister wasn't a match and there were no 10/10 donors on the register so 9/10 were investigated. The transplant coordinator got in touch in January to say they had a match in USA and I would be admitted 2nd March, a week later it had all fallen through, I struggled with that news. No other suitable matches have been found so they have gone back to my daughter as she was "reserve"! Hope by next week I will have some certainty. I am being looked after at my local hospital for line care, bloods etc so at least I don't have to travel up and down to Glasgow as it is a couple of hours each way.
I have read a few threads on the forum but they make me more anxious so I'll leave them alone for now!
Sue
Hi @Suey
Claire here from the Patient Services team here. I'm so glad that you have found our Patient & Families Forum - it's a friendly and welcoming community with a wide range of personal experience and insight.
I wanted to share a link to some information on our website about finding a donor: https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants/finding-a-donor-your-stem-cell-transplant
In case it's helpful to you at this time, I also wanted to let you know about our free Telephone Emotional Support Service - you can find out more here: www.anthonynolan.org/tess. This service enables you to discuss any concerns you may have around transplant with a wellbeing specialist from 'Working to Wellbeing', which is also available to family members. They are a team of qualified psychologists with years of experience providing support for stem cell transplant patients - this means you won’t need to explain what a transplant is - they will already understand. If you'd like a referral, or have any questions about this, you can email us at [email protected] or call our helpline on 0303 303 0303 (Mon-Fri, 9-5).
I hope this helps.
All the best,
Claire
Hi again Sue,
I'm glad to hear that you are doing OK. As far as platelets are concerned I had to have several transfusions of full blood and platelets during the chemo leading up to my transplant. The chemo will affect your bone marrow and prior to your transplant it will be wiped out completely. This is so that the new stem cells you have when you have your transplant can start from new, so you will need to be supplemented by transfusions until your transplanted cells start working fully.
You're right to leave the other threads on the forum for the time being as many of them might mention things that may not happen too you. Everyones transplant experience is different and you may get through without any of the issues dicussed in the other threads. If any do, you know that we can support you here and that there may be others that have experienced what you do.
It's good that you are having your checks carried out locally. I had my treatment at a hospital that was 30-40 miles from home so I know how inconvenient the travelling can be and it adds to the stress of an already stressful period.
Take things one step at a time and try to focus on the end goal which is to get over your transplant when it happens and return to a normal life. As Claire has highlighted, besides the forum there is a lot of information available via the Anthony Nolan website that will help you understand the processes you are going through, and if you need direct support other than through this forum, the Anthony Nolan team can be contacted via the Telephone Emotional Support Service.
Best wishes,
Steve
Hi, my mum has a SCT after diagnosis of AML at QEUH in 2020. The team and staff are great. We are still in contact with them now.
good luck with finding a donor, hopefully the wait will be over soon!
if you have any questions about the process I’d be happy to answer them!! I was able to visit anytime today when mum was getting her transplant.
Hi Hollintree
Thanks for your reply. I am actually being admitted to the QEUH tomorrow, my daughter is my donor, the best Mothers Day present ever!
Visiting is restricted at the moment to just one named person for 2 hours a day due to Covid, I think that's harsh, especially for my daughter who is donating but unable to visit, thank goodness for technology!
I spent two 5 week spells at the Beatson last year so I have packed snacks and a few things to keep me busy!
x
Good luck with everything! Restricted visiting is hard but hopefully it will al go smoothly and you will be home in no time for recovery!
x