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.
My father was exposed to agent orange while deployed with the army in Vietnam. This is what the doctors believe to be the cause of the MDS that went untreated apparently and became AML. His CBC has shown platete counts around 50K since April and he was assumed to have a low vitamin b sent home with a prescription for vitamin b by his VA primary. it wasnt until he had a routine colonoscopy that included and upper GI that they found MALT lymphoma. which by itself has a very low mortality rate with treatment, so it was scary but we knew he could be cured. They went on to run a BMB because this was a different doctor and he actually realized that my dads CBC wasnt right. thats when they called up and diagnosised him with AML. Breifly, my father is an amazing man who goes through life never taking a day for granted. People we worked with at the VA hospital actually found it annoying how happy and energetic he was. He seems so healthy and so strong with more energy than i have at 26 years old. So within a couple weeks our lives have been flipped upside down. like a nightmare i cant wake up from. I am currently fighting with the VA-healthcare system to get him into MASS General Hospital or Dana Farber, but they want to treat him at a VA hospital which is sub-par at best. My question to the group is, should i be delaying this to get him into a better hospital or am i lessing his chances by doing so...even now he is in the hospital and seems totallt healthy with absolutely no problems other than his paleness and blood results. they wanted to start his chemo today but i have stopped them for the moment. Any advise is greatly appreciated and i would love to hear from some men over the age of 60 that were able to beat this.
Im very glad i found this group. AML is rather uncommon from what ive heard and i feel incredible alone
So sorry about your dad's dx; however, I'm glad you found us. I frequent another AML support group at the lymphoma leukemia society that is more active than this one that may be helpful as well:
http://community.lls.org/forum/25-acute-myeloid-leukemia/
We are here to help you. I'm going to pass on some of the great advice i have recieved. I was dxd 4 years ago at 48 with inversion 16 AML. i am healthy, cured by the grace of almighty God and living a more abundant life than pre aml.
Try to not search the Web about AML. the stories are dire and so are the stats. They are scewed and really the only stat you need to focus on is one, your dad. Please read this article about cancer stats
http://cancerguide.org/median_not_msg.html
Only get info from this group and the other i provided and a med team you trust.
On that point, does your dad have tricare? That is the insurance i have as my husband is retired AF and we are both DoD civilians. Tricare was fabulous and convered all costs.
I agree the va is not optimal but delaying induction chemo is dangerous. I agree, you should push for better treatment. I know of several who have been treated at walter reed with great sucess.
Do you know what sub type aml he has?
We are here for you. Ask any quetio s
Blessings
Julie
https://www.lls.org/leukemia/acute-myeloid-leukemia/diagnosis/aml-subtypes
The importance of this determines treatment plan. Chemo only or stem cell transplant. The BMB before chemo is used to determine cytogenetics, subtype and any mutations such as FLT 3. So glad to hear you being your fathers advocate. Take heart, AML can be cured.
Honest, he will need induction chemo asap
induction often involves treatment with 2 chemo drugs, cytarabine (ara-C) and an anthracycline drug such as daunorubicin (daunomycin) or idarubicin
This is the current gold standard. Also, Depending on his cytogentics and subtypes they will further create a plan, for either stem cell transplants or consolidation
If he has Mds /aml it is most likely he will go the Stem cell transplant route
Now, I will say he absolutely needs to get to a top hospital and Transplant center for treatment, there's no reason the cant transfer him and get started asap
I'd fight like hell for it
You don't want to be anywhere you don't feel comfortable and you don't want to switch hospitals mid treatment plan if you can help it
If the red tape is too thick then get the induction going and get those cancer cells cleared out of his body while you work on gettingbhil outta there for the next phase
Any good Dr will respect this and shame on the VA if they act without their patients best interests
I will pray for you guys, I'm sorry you're having to go through this
-Lea
Best wishes
Karen