DLI for NPM1-mutated AML
Hello everyone,
I hope you are all well and healthy. This is our situation. In the summer of 2022, my husband was diagnosed with AML with the NMP1 gene mutation. He completed all the therapies, he was transplanted a year and 4 months ago. An allogeneic stem cell transplant went so good, without GvHD, a little redness on the hands, feet and face. After 6 months after transplantation, he had a positive PCR for NMP1 via MDR measurement. He received his first DLI, after which he became PCR negative. But after 2 months the PCR became positive again, he received 2 DLI and still remained positive. He has now received 3rd DLI and we are waiting 6 weeks for another follow-up. Otherwise, his blood count is excellent, 100% chimerism, he also receives micro doses of Vidaza every 4 weeks. He has strength, eats, walks, does everything by himself. He doesn't have any side effects other than increased liver markers and he takes medication for that. The only problem is that molecular relapse.
I am interested in whether there are any other options, the experiences of others, how many times they had to receive DLI, whether the NMP1 gene mutation can somehow be treated in a different way.
Thank you all for your answers and experience.
Comments
Hi kamy1302.
I am Liam the Patients and Families Manager at Anthony Nolan. Thank you so much for your question. I have passed your question on to our clinical team here and they are aiming to get a response to you on Friday.
All the best
Liam
Hi Kamy1302,
I'm Rachel the Lead Nurse here in the Patient Services Team. I know you were seeking some peer support/advice hence your message on this forum but I wanted to give you some answers to the questions you've asked from a clinical perspective too.
Its great to hear your husband is feeling so well, it sounds like he has had a good recovery following his transplant. The use of DLI and Vidaza (Azacitidine) are standard practice in the UK for managing a molecular relapse, which is the treatment your husband is currently undergoing. The clinical team looking after your husband will obviously know his history and how his AML has responded to treatment prior to his stem cell transplant and will be best placed to advise on any changes to treatment. The usual number of DLI treatments (dependant on the amount of cells available from the donor) is approx 5, this may be different if the patient is on a clinical trial.
I hope that's helpful. Do get in touch via our telephone enquiry line if you'd have any further questions.
Best wishes
Rachel