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Stemcells manchester

Hi all,I received a letter today from Manchester royal asking could they dispose of my stemcells that are being stored there as it's been 11 years since I was dx and they would no longer be any good.what should I do ? Store them at another hospital ,let them destroy them ,use them for research or discuss further? Any advice would be great ,thanks kathy.xx

Hi Kathy,

I assume the cells were collected from you rather than donated by someone who matched you?
If so, are they actually cells collected when you were in remission after you had started TKI therapy?
Are they actually stem cells or mature leukocytes... i.e mature white cells like lymphocytes, neutrophils?

If you are in deep molecular remission and have been for some time I think you might ask to have some more cells collected and stored if you think you might need them in future- but that really depends on your level of remission MR3 or deeper as if you have held MR for some years then it is unlikely that you would relapse- and should you have problem in future there are at least 3 other drugs you can be treated with so... do you really need to store your cells?

If they are stem cells from an HLA matched donor then that would be a different question.

Hope this helps,
Sandy

Hi sandy,thank you for your reply ,when I was first dx I was put on a machine for 3 hrs ,and I think it's the cells from that ,I've been in mmr now for 7 yearS ,so all is good, xx

Hi Kathy,
In that case if I were you I would not worry about keeping them. If they were collected at diagnosis then there will be more PH+ cells present than you now have given that you are in molecular remission. Talk to your doctor about it just to clarify things for yourself.

Well done for achieving such a good stable remission.

Best wishes,
Sandy

Gave them permission to incinerate them.

They were stem cells collected at diagnosis, with the intention of using them to put me back into chronic phase, if needed. Apparently they can't be used any more. Stem cells have to be tested before they can be used and the legislation now means that these particular cells cannot be tested. They will never be used because of legal safeguards.

That's how I understand it.