Hello
I’d like to hear from people who need/ed a SCT but have not been able to have one and who are still in remission?
I was diagnosed with AML in March, 3 rounds of chemo and my sister was flown over from Australia as my donor but a week before the transplant date I developed antibodies to her.
I have been told that an alternative donor is not an option due to my rare tissue type…
Therefore I am interested to hear from anyone who has bot been able to go to transplant but is in remission and doing ok?
Thanks
Hi Corrina, I just cannot imagine what it must have been like to have had your sister flown over as a donor and a week before the transplant date you developed antibodies to her. I also wonder how your sister felt and would be interested to know how it was for you both emotionally?
Devastating for us both… of course for me it just makes the AML so much more dangerous And for my sister, she was so disappointed that she couldn’t help me as she had wanted to do…
Hi @Corrina firstly I am so sorry to hear this- I can not even begin to imagine how you must feel but would just like to say don’t give us hope as there are a couple of options here. You can be desensitised for the antibodies and can still use your sister (depending on how you respond to the desensitisation) or can campaign really hard to find a MUD. I am sure your doctors have spoken to you about this.
My fiancée has AML FLT 3 ITD blood cancer. We are currently in search of a donor as he has antibodies against both his sisters The search has been on going for 6 months. In a year we have completed 1 induction round of chemotherapy and 4 rounds of consolidation chemotherapy and he was also on oral target therapy. 4 months after the last chemotherapy he relapsed and definitely needs a bone marrow transplant in order to survive. At the moment I am doing a lot of research on using his sisters (I am speaking to a lovely experienced doctor in London about this) and trying to set up donor drives. Basically the way I see if we will find a way to give him a STC with minimal GVHD as possible- I will die trying to make this happen. So I am happy to talk to you any time and share any information I have found with you. Also someone suggesting this face book group called AML FLT3 survivors for extra support and advice which I have now joined- it could possibly also be helpful to you.
Hi Corrina, thanks for sharing all of this useful information… AML is such a complicated disease and what you have posting is very interesting. Where abouts are you doing the donor drives?
The group you mention, is it UK only? I don’t have the FLT3 but am in ones for AML and find they can be unhelpful because when there are people posting crazy stuff from some countries such as strange treatments its just stressful… plus with the US having private health care they often have different attitudes to treatment.
Hello and thanks for posting. I wish you all the best. I am not good at navigating this Forum so apologise for a late reply…
I had a plasma exchange trial which didn’t reduce the antibodies significantly enough to have a transplant. I have a rare tissue type and they said it would be very unlikely to find another donor and a year on now no one else has been found…
I joined some facebook pages and had to leave due to the horror stories and desperation from people especially as I am on a new drug which I want shared info about because I want the best for others too but people were sending private messages asking to talk to my Doctors etc and I was scared for myself in the end!
Thanks again for your information, it is useful and all the best for your Fiancé…
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Hello.It is sad that some people can make us feel unsafe on FB. Unfortunately it is a place where we have to think twice about what we share, and be careful about the groups we join.
How are you getting on with the new drug? Is this a clinical trial?
I hope you are coping well during shielding. Best wishes
Oh, @Corrina, I am sorry you have had such nasty experiences on Facebook. I have stuck with Blood Cancer UK because I have found it professional and the information is up to date and reliable. I am glad you are on a new drug now. If you need to chat to someone for support you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. How are you feeling now?
Welcome back to the forum @Corrina. How are you doing at the moment and how have you been coping over the past few months?
I’m so sorry you had to go through that on Facebook, that sounds really stressful for you!
Hi everyone thanks for your posts.
I have been on this drug/chemo combination for 11 months just going through my last ‘cycle‘ now and suffering terrible nausea and some vomiting but after this week of the injections it will pass…however I am MRD negative although I have not been able to have a bone marrow since February because of Covid so as far as I know I am ok.
I will have my antibodies tested at the end oh July and it will be interesting to see if they have gone down and I hope so because I will feel like I have a back up plan…as no donor has been found for me.
I am beginning to think about the next phase of healing and recovery and of course all the worry of the unknown especially as my case was so unusual…
I think I might use this forum more often but still trying to work out how to nest navigate and use it…
Best wishes to you all stay well x
Oh no it is not a clinical trial… I had to pay for it in the end because they didn’t know what else to do for me…NHS funding was rejected. It seems that the UK is a bit behind with regulation and funding? There are so many new drugs which have approved in the US and Australia.
Hi @Corrina, Thanks for telling us about your treatment and I am so glad that you might use our forum more. Please don’t worry about trouble to work about how best to navigate our forum, there are no rights or wrongs and I still struggle and I have been on the forum since it started. If you don’t post we can’t support you. How have you been in isolation?
Thank you for the update. It is amazing how we get into a rhythm when having treatment, in my case, with my first chemo treatment given fortnightly I knew the first week I would have constipation, nausea, and little appetite, but the second week was a week to see friends etc. Ginger was my friend for nausea.
If you click on the three lines at the top of the page, and then others it will give sub sections which you can explore. I hope that helps
@taz_11 may I ask how you and your fiancee are getting on?
I am so very sorry you’re going through this, I can only imagine how worrying it must all be. Please do feel free to call our support line if there’s anythuing we can do to support either of you.
Thank you for sending such a supportive reply to Corrina and sharing the information about the Facebook group for extra support.
Hello @Corrina I’m so sorry to hear of the side effects you’re experiencing it sounds so debilitating. Have you had support around managing these side effects from your treatment team at all?
Really hope your antibody test in July gives you the results you are hoping for. Do keep us updated…glad to hear you might use this forum more often, we are all here for you!
Do send me a message if you have any questions about navigating it, it isn’t the easiest sometimes, and please do get in touch with us on the support line (0808 2080 888/support@bloodcancer.org.uk) if you want to chat anything through or if there’s anything we can do to support you at any point. Very best wishes.