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.

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Leukemias
/ Acute Myelogenous Leukemia (AML) Support Group

Relapsed post transplant/New clinical trial

sbph
sbph
Hi everyone - as a quick reminder, my 64 yr old father was diagnosed with AML with FLT3 last May. Was first treated with the regular 7+3 chemo, then relapsed. Treated next with MECC, relapsed again. Went on a clinical trial for Plexxicon, which worked for a month but then he relapsed again just before transplant. A regimen of Vidaza+Sorefenib got him into remission long enough for him to have a bone marrow transplant last November.

Unfortunately, he relapsed again several weeks ago, just short of 6 months post-transplant. He is now on a new clinical trial at Cornell (in NY) called ASP 2215. Its a new drug that I believe has been in Philly and MD Anderson. Anyway, he has been on it for 2 weeks so its too soon to say whether its working or not. Will keep everyone posted.

Relapse is terrible news but the good news (one is always looking for the silver lining) is that new and improved drugs are constantly on the horizon.

Fingers crossed, lots of prayers, and I hope you be back to you with some good news on my dad's progress.
Noodle65
Noodle65
Praying for your Dad's remission.

Blessings,

Julie
dbrowncsuaedu
dbrowncsuaedu
SBPH -- Thanks for bringing us up to speed -- some of us with chemo brain need that (I sure did). Yes, bad news cubed. I join Julie and others in fervent prayer for your dad -- I was DXed myself at 64 -- seems to be a very common year ... too many in the vicinity of 62-70 for it to be a coincidence. My theory is that something wears out and it either causes or fails to prevent your stem cell (at least one of them) from mutating. But you are right about these new drugs -- I have a friend who has CML and they are treating her with a couple pills a day and it has her in remission already (about just a couple of months). The idea is to target the mutant offender and either kill all the blasts of disable it somehow. Chemo is brute force -- tries to kill the mutant without killing the rest (we need stem calls, but good ones).

PLEASE keep us up on your Dad's situation it should be obvious that EVERYONE on this forum is vitally interested. Thanks -- dave
Brtwilight
Brtwilight
My brother has been on this trial with 2215 for two months. He seems to be doing well. Had bone marrow test today to see if he is in the range they want for transplant. They have pencilled him in for July so we are thinking they feel he is on the right track. He has had n
Little to no side effects so far with 2215.
We are in Philly area. Bright side is both of his sisters are 10/10 matches. I am 65 so they are taking my 60 year old sister.
Pray all goes well for your dad. And all fighting this horrible disease.
Susan
CajunGirl2015
CajunGirl2015
So sorry to hear about your Dad's relapse. Hoping and praying things continue to improve with this new treatment.

Debbie.
xuelan
xuelan
Let me add my prayers for your Dad. As you say, there are so many new treatments on the horizon and in reality that should make a huge differences in how patients do in relapse. Have courage and keep fighting.

Cliff
mtnbyker
mtnbyker
let me join in the prayers for remission and health for your dad. all these new treatments are pretty promising and encouraging.

Dave J
sbph
sbph
Thank you all so much for your encouragement and for your prayers. And Susan, thank you for the information - its very heartening to meet someone else who is affiliated with the same trial. Please keep us posted on your brother's BMB - i pray he is in the range for transplant!

So far, my dad has been on the trial for about 3 weeks. He was in VERY BAD SHAPE when they put him on the trial - 85% blasts and sky high WBC. His heart and lungs were critically affected and he was in the ICU for about a week. They first got the WBC down with Hydrea and then started the trial. His WBC is now 3, and his blasts are down to 45%. Still have a ways to go, but he is feeling so much better and is home and is functioning well. A very far cry from 3 weeks ago when he was in the ICU with little hope.

Fingers crossed, prayers said. I will definitely keep you posted.
Brtwilight
Brtwilight
Yes. Let's keep each other posted. We hope to get the GO either tomorrow or Thurs. when my brother revisited his nurses from Feb/early March, they did not recognize him. He is doing fairly well. Sounds as if the drug is helping your dad also.
May they both beat this. Are you far from Philly?
Susan
dbrowncsuaedu
dbrowncsuaedu
My first message got wiped out -- I just wanted to let you know how much we appreciate what your dad is doing for us and for all AML victims. Many older people cannot tolerate chemo and if and alternative could be found it will be a Godsend. Please let him know that we are all pulling for him and praying for him, and we appreciate what he is doing as part of this trial. Thanks -- dave
deleted_user
deleted_user
Hi All... so glad to see some hopeful news about 2215. My sister and I are hoping this will help our mom diagnosed last December. She has done 7+3 chemo and recovered but relapsed within weeks She then started another round of 7+3 but we found she had the flt3 and chemo failed. She is 69 and we hope to get her blasts down from 90% to 5 to 10% so we can proceed to transplant.(unfortunately none of her siblings are a match) She just started the drug trail and we are trying to stay hopeful. This is just in time because we are seeing her decline physically and emotionally. My heart goes out to you all. I hope for better days for everyone that are in the throws of this Illness.
ccwong
ccwong
I am so happy and hopeful to hear about the results of asp 2215. My brother relapse in early july after BMT at the end of April and we have been fighting the last month with problems gvhd in the stomach area. We went from massive dehydration and being hospitalized for the dehydration, nausea and vomiting to massive constipation in a span of three weeks. Now he's on hydrea to control the rising WBC as well as a ton of other meds. He is finally being discharged tomorrow and his oncologist hopes to hold things steady until UCLA starts the asp 2215 trial. It seems that the asp 2215 affects all flt 3 mutations whether they are ITD or TKD. This seems to be our only hope as all the flt 3 TKD mutatiion type is unaffected by all other drugs. We pray that his body will hold things in status quo as there are still quite a bit of regulatory hoops that UCLA has to go through before the trial can start.
Maya2014
Maya2014
Hello all...please can you update me with the progress of your loved one who received this drug? your reply is soooo important to me and very appreciated,

Thank you
ccwong
ccwong
UCLA still has not started with the asp 2215 study. My brother is on sorafenib only now twice a day and so far is keeping him alive post one DLI.

I am also extremely curious if anyone has an update on the study as we think he will be a good candidate for it.

Thanks
Brtwilight
Brtwilight
My brother relapsed post BMT and will be on 2215 for second time. It worked for him before transplant. Trial has been in Philly for awhile. Hope your brother gets on it soon!!