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Hey! Just wondering if anyone has had the experience of a DLI on here ? I have had two one in November and one in January and nothing much has happened. Could someone tell me the norm of what’s meant to happen :)
Thanks in advance
There are quite a few patients on the forum that have had DLI's at various times so I'm sure one of them will be able to respond with their experience, though as we know, everyone responds differently.
As I understand it a DLI is usually given when your chimerism (percentage of donor cells) is lower than expected, so the extra infusion is given to promote an increase. I'm not sure you would notice anything physically but has there been any change in your chimerism at all, which is what you would hope to see?
You mention that you've had two seperate DLI's up to now with the most recent being in January. I don't know how quickly they're supposed to act and they will probably vary from patient to patient. I'm also not sure how many DLI's you can be given, but I expect there will be others who can help with information.
How are you feeling otherwise?
All the best,
Been feeling very well, and have been since December. It’s weird feeling well when I’m still having lots of appointments
Thanks for posting and I am glad that you feel well. I am the lead nurse in patient services.
When having DLI it's normal to feel no different and we would not necessarily expect you to become unwell. However as you have had an infusion of donor lymphocytes you might experience GvHD, so you must be mindful to look out for symptoms. The main organs that will be affected are skin, gut and liver so you should observe for skin rashes and diarrhea. Your medical team will be monitoring your liver function from your blood results. If you experience any changes, even if you feel well and they don't really bother you please let your team know as they can then decide if any follow up will be taken.
Please remember that if you do not have any GvHD that doesn't mean that the DLI hasn't worked, the main indicator will be your chimerism count. Responses to DLI can take months and in some cases you can have more than 2 or 3 infusions and this will depend on your response.
I hope this has helped and please keep us updated.
Hi Georgie, how are you getting on with the DLI? I had a total of four DLI treatments and it took some time before my chimerism started to improve but it did eventually and I had no GVHD, everyone is different but it can take a while for it to start improving the chimerism
Thank you for saying both of you! I’ve had I think 4 and my chimerism went up which was so nice to see. I haven’t had any GVHD and nearing a year post transplant. Hoping it all stays well :)