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Acute Penotypic Leukemia Husband Diagnosis New Help!

kboyer3
Posts: 3
Joined: May 2016

My husband was just diagnosed with acute phenotypic leukemia. He is 44.  He went to his primiary doctor because he had been having chest pains (for a couple of months but he had't told me) and they thought he had angina. They sent him to a cardiologist who was going to do a cardiac catheterization but sent him for bloodwork first. When his blood work came back his red cell count was 5 and his white blood cell count was 1.7. They admitted him and gave him a transfusion. The next day they did a bone marrow biopsy and told us they would need to start treatment right away so they put in a pic line. When the perliminary results came in they said that his case was "difficult" because he had both types of blasts and they needed to do more tests, so they took the pic line out and sent him home. A week ago they called us in and said he had acute phenotypic leukemia and that they would refer him to U of M for treatment. We are STILL waiting on test results (I don't understand why it takes so long, patience is a virture I am sorely lacking right now) and we meet with the U of M doc tomorrow. I'm SO scared for him, for myself, and for my family.  He seems to be taking it all in stride. He thinks he will just have chemo and be better. I'm not sure if it's better to let him think this way or to try to impart the severity of what we are facing to him. I took a (unpaid of course) leave from school. I can't sleep and I certainly can't teach a classroom full of 30 sixth graders right now when all I think about is my husband.  Our original oncologist said that my husband was the first case he ever saw of phenotypic leukemia and was likely the only case he ever WOULD see in his career.  Is there anyone else who has faced this diagnosis out there, or a family member who can help guide me?  I don't know what to do for my kids. We are trying to keep their lives as "normal" as possible right now.  If you have any advice, or any suggestions, PLEASE reply! 

 

Thank you. 

Deltat210
Posts: 7
Joined: Apr 2010

Hello, sorry this is an old post, but I was diagnosed with APML this past week, I immediately received ATRA 2 x a day, followed by arsenic,  I am in day 7 today staying optimistic, long road ahead

 

rainbow84
Posts: 1
Joined: Sep 2017

I'm currently getting treatments for APL. After being in the hospital for 7 weeks I'm currently getting treatments of arsenic and atra. Just finished 2 rounds of arsenic.  I still have two more cycles of 4 weeks each.  I'm most concerned about some numbing that's happening on my face which I'm informed is caused by arsenic. I'm in remission and hopefully I'll be able to complete the regimen. Good luck!

Serg1
Posts: 4
Joined: Dec 2017

Rainbow84 how are you doing and do you have any update? 

 

 

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