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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ccwong 05/07/2015

Wanted to give a brief update on the clinical trial. There were six patients enrolled in phase 2 at UCLA and now Jack is the only one. Liver enzymes are almost back to normal except one. He needs blood once every 1 1/2-2 weeks and platelets once a week. He is really having a tough time getting the platelets up. Still on IV antifungals daily at home. Clinic visits went from 3x a week post discharge to 2x/ week. He's feeling much better to the extent that he can drive and goes out to eat, but still low energy. He's gained 15 pounds which is miraculous. Still on prednisone between alternating between 5 & 10 mg each day to control mild GHVD (skin issues). BMB scheduled for last week in May.

I think it's a good sign that ASP now has a name

mtnbyker 05/07/2015

Sounds like good progress. Will be praying for an all clear on the bmb.
davej

worriedmom2014 05/07/2015

Thank you for the update on Jack. Sounds like things are finally moving in the right direction.

Hugs and prayers.

Karen

Noodle65 05/07/2015

Praying for a clean BMB for Jack-Thanks for the update Cecilia!

Blessings,

Julie

hope2all 05/07/2015

Hi Cecilia,
Thanks for your update. I'm so happy your brother is making positive steps forward. It must have felt so liberating for him to drive again! May he continue to grow stronger in health everyday. Wishing him an all clear BMB! xxx

dbrowncsuaedu 05/07/2015

We are all praying for Jack and giving thanks for the good news. It could be better, but it could also be much worse. Hopefully this will be a major step toward a breakthrough, and when you get a chance be sure to tell Jack that he is a hero to us for being part of this trial. Take care -- dave

Brtwilight 05/08/2015

Cecilia,

I want to add that they have adjusted the trial here so my brother can stay on the drug AFTER a second bone marrow transplant - that is tentatively on for early June. We are not looking forward to this process again but my sister's marrow was not strong enough to kick butt. There were good signs and then??? We are hanging our hopes on some young, unrelated, male marrow plus 2215 after to get him to where so many have successfully gone before.

Keep us up to date on Jack. Prayers to all --- keep us in your prayers. We need them.
Twiligh

ccwong 05/10/2015

Twilight, I'll be praying for your brother dave. I can't imagine going through a second transplant again but apparently this has been the process for quite a few people on this drug. Please keep us updated.

Thank you for all the prayers and support. I feel so blessed to have such a great community of friends.

xuelan 05/10/2015

It is great to hear the news. Full speed ahead to June!

Cliff

Brtwilight 05/10/2015

Thanks to all of you too. We are in a holding pattern right now - waiting to hear they have located the perfect donor and are ready to set a date.

I am usually second string when it comes to info but will generally update as things proceed.

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