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

amlmomma 08/04/2015

I got the call yesterday that no parent wants to hear. " There is no match for your son's transplant". :( They are talking about doing a haplo transplant using me or his Dad. 10 years ago, haplo's were not done and my 18 year old son would not have a chance. Now, through advances in treatment, we still have hope. We are scared, but at least we still have options.

Noodle65 08/04/2015

Momma,

You are so smart to look at the bright side of this situation. Although I am chemo only, where I am treated they are having great success with halos with reduced gvhd. I know of at least one here who had done well with haplo. Moonbeam I think. Hopefully, she"ll chime in.

Blessings
Julie

Noodle65 08/04/2015

http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/19319493-welcome-post

Momma,

Moondreamer post regarding haplo above. Myfamily is praying for a cure for CJ Daily.

dbrowncsuaedu 08/04/2015

Momma -- I posted on the other thread, but this one does not sound nearly as good. Just realize we will all be praying for your son -- have faith, most of us have been through things like this, and the chances of his getting thru at his age should be good. Take care of yourself so you can take care of him -- daveB

worriedmom2014 08/04/2015

I have heard of several hapos with good results. Have they tslked about using cord blood?

As Dave said your son's young age is a great advantage here. Happy to hear treatments are going well. Will keep praying for the lord to lay his healing hands on him.

Hugs and prayers.

Karen

ccwong 08/05/2015

So sorry to hear about your young son. You may want to talk to your team about this study:

https://clinicaltrials.gov/ct2/show/NCT02236013?term=asp+2215&rank=4

Asp 2215 has had good effects on flt 3 itd and tkd mutations. This may be a good alternative to SCT. If he does well and goes into remission, they may not need to do a transplant. Twlight's brother as well as my own brother is currently on 2215. My brother's situation is extremely agressive considering he relapsed after two months post transplant. I'm very sure if he's not on 2215, he would not be still here. He's nowhere near normal and still needs platelets weekly, but praise God he's not in the hospital and is home spending time with his young kids (3& 4)

Brtwilight 08/05/2015

Dear Momma,

I too will keep your son in my prayers. My brother relapsed after first transplant and had a second. So far, he is doing well and like CC, i think 2215 has kept him alive and given us hope. At least ask about this trial.

Hugs and prayers
Twilight

amlmomma 08/06/2015

He is in remission, but due to the 90% chance of relapse on chemo alone, they are saying he needs a transplant to have a chance at a cure.

worriedmom2014 08/07/2015

Have they thought about using cord blood?

Karen

amlmomma 08/07/2015

They do cord blood transplants at his hospital, but did not mention it. I plan on asking. But I am guessing it is due to his size. At 6'3" and 300lbs, he is a big boy and I don't know if they have the ability to increase the number of cells in cord blood.

worriedmom2014 08/07/2015

Oh probably not although I have heard of people getting two cords and also cord cells with hapo cells with good results.

My son is also a big boy. They did not think they would find him a match but they did find him a 10x10 match in the European bank and were able to harvest enough cells for his big size.

JT is in my daily prayers.

Hugs and prayers.

Karen

Join the Conversation