Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi new to the group was diagnosed March 2017 with this. Failed IST atgam, started ecluzimab this week for pnh and having allo sct at St James Leeds in September. Anyone else on here with this condition ??
Hi Acart89 and welcome to our corner of the Online Community but always sorry to see folks finding us.
I am Mike Thehighlander and I help out on the site and have been through two Allo Stem Cell Transplants (SCT) with cells from my brother.
I just had a check through the site and did not get any hits on anyone with aplastic anemia going through SCT.
Some further research came up with the suggestion that someone with your condition my receive stem cells from bone marrow rather than stem cells that are harvested from peripheral blood - what has Leeds told you?
We have a few who have been through SCT with MDS. A further search on Paroxysmal Nocturnal Hemoglobinuria (PNH) came up with a hit on AmnesiaCustard husbands who had a PNH diagnosis along with MDS. He went through an Allo SCT back in February 2017 and is doing very well - let’s see if she picks up on your post.
SCT is used extensively for lots of blood cancers and blood and bone marrow conditions. But we understand the process as it is basically the same for everyone.
Clear out the blood and bone marrow using string treatments and use donor cells to restart the all new you. That is over simplified but is the basics.
Ask any questions and we can help as best as we can to get your head round the SCT Rollercoaster.
We also have our ‘Ask an Expert’section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply. You can find Jane, our Nurse who has experience in Stem Cell Transplant and post SCT aftercare.
When you feel up to it think about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Always around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thanks for the reply. I think it’s pretty rare doesn’t seem many people to have it. The ecluzimab is calming the pnh down before the transplant as the clone is around 95%. the donor cells are from the bone marrow, less T cells or something so less change of gvhd They say it will not benefit me at all As no graft vs Tumor is needed so they’re going hit it with medication straight away. I’m having fludarabine, cyclophosphamide and altuzemab low dose so hoping the effects won’t be too rough. Will have to wait and see
Please keep in contact as we can help as best as we can.
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