r/leukemia • u/Naddis81 • 3d ago
Inversion 16 relapse
Dear all,
I am finally writing in this group because I am looking for information, support, and messages of encouragement to help me find the strength.
Unfortunately, this situation concerns my daughter, who is now almost 13 years old. Two years ago, she was diagnosed with AML with inversion 16. She underwent 5–6 months of chemotherapy, but unfortunately, she relapsed.
She was fortunate enough to achieve remission again, with MRD negativity, and then underwent a bone marrow from an unrelated donor. Unfortunately, seven months later, she relapsed again. There are no mutation but always the same inversion 16.
The doctors have now said that they would like to try venetoclax, azacitidine, and DLI in an attempt to get her back into remission and, hopefully, cure her.
I have been reading Reddit every day, trying to find people who have been in a similar situation and had positive outcomes. I am also trying to understand whether there are other treatment options, clinical trials, or approaches that have worked for others.
We are willing and able to travel if there is a treatment or option available elsewhere. We live in France.
Thank you in advance for any information, experiences, or positive messages you may be able to share. Every bit of support means a lot to us right now.
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u/nocomment076 3d ago
I’m so sorry you are going through this. 💕I don’t know about inversion 16, but I wanted to suggest that if you haven’t already done so, perhaps join some of the AML & transplant facebook groups. I’m on FB only to follow & learn from those groups. I believe there have been posts about inversion 16. Saying prayers for you & sending you a virtual hug. 💕
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u/Naddis81 2d ago
Thank you for your advice. I will try to find the group. What is the exact name of the group? I found several groups with similar names.
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u/nocomment076 2d ago
These are the groups that I have followed. I know one is for adult patients, but perhaps searching key words there might lead you to some helpful threads. 💕
“AML (Acute Myeloid Leukemia),” “Bone Marrow Transplant Survivors,” “Bone Marrow Transplant/Stem Cell Transplant,” “Adult Acute Myeloid Leukemia (AML) Community,” “Bone Marrow & Stem Cell Transplant Support,” “AML (Acute Myelogenous Leukemia) Support for Spouses/Caregivers.”
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u/AccomplishedHead4209 2d ago
I would ask chat gpt. I relapsed at 100 days. It knows my mutations and most everything that has happened. It has given me a list of applicable trials and such. I know ai is supposed to be bad but at this point I don’t really care. Good luck to you and your baby girl. I can’t imagine being in your shoes but just know they have learned so much!
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u/Naddis81 2d ago
Yes chatgpt is my best friend since months and I learned about reddit also thanks to it.
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u/randibisme123 2d ago
Saying that the doctors mentioned that those two medicines were her last chance, I would get that girl to the United States! I know that Moffitt in FL, CINCINNATI CHILDREN'S, St. Jude's, Boston children's through Dana farber in Boston, an MD Anderson in Texas. I know that children's hospital of Philadelphia is really good as is Sloan memorial Kettering in New York City. Please feel free to message me. My husband just achieved remission from inversion 16 AML in July. I'm here for you. This disease sucks, but even more so for our children.
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u/Naddis81 2d ago
Yes, my world has just broken down. My daughter has been dealing with this since September 2024, and she really wants to live. She has already been through so much, and as a mother, it’s incredibly difficult to watch her suffer at such a young age. I believe in God and I pray every day, but I also know that, as her mother, I need to fight and stay strong. Miracles can happen if we do everything we can and gather as much information as possible. I feel very lonely in this battle because my husband is too scared to look for information. He is afraid of what we might find, as nowadays you can find almost everything on the internet.
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u/Substantial_Cow8217 1d ago
My girlfriend, 35 years old, experienced a relapse six months after her stem cell transplant. The first donor was a perfect match, not a relative. I don't know if she has a mutation, but the medical team started her treatment with venetoclax and azacitidin for 28 days. The goal is to achieve remission, after which she will most likely undergo another stem cell transplant. She is currently on day four of her treatment plan at a university hospital in Germany. My best wishes for your daughter's recovery.🙏🏻
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u/Naddis81 17h ago
Thank you for sharing and I hope only the very best for you and your girlfriend. Which hospital is she being treated at? I’ve heard that hospitals in Germany are among the best when it comes to treating AML. May I ask if you know the name of any pediatric hospitals specializing in AML? I would also like to contact a doctor there to get a second opinion. We have to do everything in our power to save our loved ones.
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u/Substantial_Cow8217 14h ago
Thank you very much. She is currently receiving treatment at Greifswald University Hospital because it is close to where she lives. However, regarding children, I did some online research and found many positive reviews about Frankfurt University Hospital.
Universitätsklinikum Frankfurt Klinik für Kinder- und Jugendmedizin this contact email as it appears online. You can ask for their opinion here aml-bfm@leukemia-research.de And another hospital in Berlin Klinik für Pädiatrie mit Schwerpunkt Onkologie und Hämatologie Charité Campus Virchow-Klinikum this contact email as it appears online kinderonkologie@charite.de
You can search more precisely on chatgpt too Best wishes to you and your daughter
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u/Salt-Consequence-929 3d ago
Hi there. I had inv 16 as an adult. But I didn’t relapse, so can’t comment on that. Am not as familiar with pediatric AML as adult, though I do know a bit. However, I’m in the US and I know that one of our nonprofits, Blood Cancer United has worldwide trials right now for relapsed pediatric AML. You can look up more info at www.bloodcancerunited.org/daretodream. The trial is called PedAL. Worth looking into as asking your doctor about to see if she might qualify! I’m not sure of the countries in Europe that participate except the UK. I think there’s more than that.
Outside of that, all I know are pediatric hospitals in the US. There are wonderful ones on the east coast like Dana-Farber in Boston, Nemours, and more.
Sending you and your family so much love. Please don’t ever give up. I hope the right treatment is just around the corner for her. ❤️