Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

307 Members
1,142 Posts
0 Online
Leukemias
/ Acute Myelogenous Leukemia (AML) Support Group

Desparately need help

Ira
Ira

My husband was suddenly diagnosed with AML in February, 18, 2014. He responded to 7+3 chemo ( almost died from complications) and had BMT from his brother (100%) In May of 2014. He relapsed at the end of December, 2014. Had HiDoc and then DLI. It did not work. He was put on Vidaza but it did not work either... The counts were extremely low... Then we got into MGH clinical trial with high dose of revlimid and bortazemid. His marrow was compleately ablated and he spent 60 days inpatient with high fewers... then doctors gave him a donor stem cells ( from peripheral blood) and he miraculously and very fast got into a remission --- it was in July of 2015. Unfortunately his counts started to slightly drop and he had BMB done last week --- the results show 60/70 % blasts ( biopsy) or 5% abnormal myeloblasts (flow cytometry)... I am devasteted... I was following this site as well as lls.org and followed the members --- NOODLE and RADIOBOBBY.


I am trying to get # for City of Hope for clinical trial CD123. Dear Noodle or Radiobobby --- can you please contact me?


iburwell@comcast.net or301-452-6381. Hope to hear from you very soon! Irene . ps. please forgive my spelling mistakes since I am russian...

coinlieutenant
coinlieutenant
Ira,

I am sure that Noodle will be in touch quickly. Prayers for you and your husband.

V.r
John
Ira
Ira
thank you so very much!!!!
Noodle65
Noodle65
Dearest Ira,

I will email you with RadioBobbi's contact info. She is a force. I am so glad you reached out to me. They're is hope, please don't give up. I'm praying.

Blessings
Julie
Ira
Ira
Thank you so much, you are an angel!
Noodle65
Noodle65
Hi irene,

I know radiobobbi connected you with doc from coh. Do you have a treatment plan

Julie
Ira
Ira
Dear Julie -- thank you very much! We do not have a treatment plan yet since we still do not have fish panel and other tests back. We did see our doctor at Hopkins and talked about our options in general. I am very greatful to Bobby! She IS amazing!!! Dr. Forman called us on Wednesday, but due to the absence of the results he was not able to lead me into any direction. We already made an appointment at MGH with our second transplant doctor on Wednesday. When we have the results back I will contact Dr. Forman. I was thinking about CD123 trial and it only runs in City of Hope by Dr. Forman. My husband previously had a cd 123 marker but I am not sure about this now... I am desperate to have a plan asap. I found a clinical trial of IMGN779 at DFCI targeting CD 33. Somehow I believe in CAR T more than antibody conjugates ( like mylotarg) ... but I am not a doctor, just a caregiver on a mission to save my dear husband... needless to say I am beyond despair but am more hopeful today that few days ago... Thank you so very much!!! If you can pray for my husband , please -- his name is David
Noodle65
Noodle65
Dearest Irene,

My family will pray for David and today at church i will ask specifically for my congregation to pray for a treatment path for David. So happy me a Bobbi were able to help.

Blessings
Julie
Ira
Ira
Thank you, dearest Julie! By the grace of God David has already beaten all the odds several times... God is listening, Saints are listening, angels are listening... we live in the time af miracles... even it does not look or feel like... we are leaving for Boston in about an hour...
Noodle65
Noodle65
Amen, amen Sister in Christ!!!

I asked for prayers for David. Please keep us posted.

Blessings
Julie
Ira
Ira
Thank you, thank you, thank you!!! We have an appointment at MGH on Wednesday. I will let you know the outcome!
Love and blessings, Irene
Ira
Ira
Here is a small update on our situation.... saw our wonderful doctors at MGH last week. They are looking at different options including possible MUD transplant if David gets into remission. No definitive plans yet since final BMB results are not in yet... leaning towards immunotherapy ---- clinical trials. One of them is ipilimumab/ nivolumab. The trial is not opened yet for the 2nd phase. Will also contact City of Hope when have the results of BMB.
David looks and feels great! We are migrating between different places ( hotel, family home on a Cape) , carrying my juicer and vegetables, trying to keep him as healthy as possible. I know that our merciful Lord, His angels and Saints are in charge and will never abandon us!
Julie -- I am very happy for your remarkable journey fighting this brutal disease! You are an inspiration! Love and prayers, Irene
Noodle65
Noodle65
Thank you for the update, Irene.
Heading to church and will be lifting you and David up in prayer.

Xoxo

Julie
Ira
Ira
Had Thanksgiving with my son and his family --- they live in Boston. Now getting ready for the appointment at Dana Farber on Monday... very nervous but also very hopeful that the right solution will be foud! Happy Thanksgiving holiday to everybody!
Noodle65
Noodle65
Praying for you and David!. I'm providing a link to the lymphoma leukaemia society AML support group where Michpete is progressing to SCT at COH with 70% blasts. To give you hope that not all are in remission before SCT

http://community.lls.org/topic/16757-blasts-are-back/page-3
Ira
Ira
Thank you so very much, dear Julie!
I do not think that my husband will qualify for full myeloablative conditioning --- second transplants are usually "mini"... his first one was also "mini". I hope and pray that tomorrow we will have some answers, but the most important day is Tuesday when we have the results of BMB done a week ago.
Thank you again! You are such a great comfort and support! Irene