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.
How can a BMB have an interpretation that says no minimal residual AML detected but on the cytogenetic report it says:
pseudodiploid clone is still present in the bone
marrow indicating persistent disease.
My sister's BMB did not have the above note in October 2014, it showed all 20 analyzed as normal. This note showed up in her February 2015 BMB and now a little higher (there were 3 out of 20 in Feb and now 6 out of 20 in June.) Does this mean it is trying to come back or just that the lower dose of Decitabine chemo is not working as well as the stronger?
Her doctor at MDA did increase the dose again and she had wanted to wait until after her daughter's wedding on Sept 12th to do the next round of chemo and he said no. He has let her wait a few weeks before so this leads me to believe he has concerns that the treatment they have her on now is not doing the job.
I'm worried about her. Even though she seems to be doing ok health wise right now, her mental state is fragile. She has been going through treatment since January 2014 and she is tired and ready to be done but she has at least 6 more months of chemo to go.
Debbie
pseudodiploid clone is still present in the bone
marrow indicating persistent disease.
My sister's BMB did not have the above note in October 2014, it showed all 20 analyzed as normal. This note showed up in her February 2015 BMB and now a little higher (there were 3 out of 20 in Feb and now 6 out of 20 in June.) Does this mean it is trying to come back or just that the lower dose of Decitabine chemo is not working as well as the stronger?
Her doctor at MDA did increase the dose again and she had wanted to wait until after her daughter's wedding on Sept 12th to do the next round of chemo and he said no. He has let her wait a few weeks before so this leads me to believe he has concerns that the treatment they have her on now is not doing the job.
I'm worried about her. Even though she seems to be doing ok health wise right now, her mental state is fragile. She has been going through treatment since January 2014 and she is tired and ready to be done but she has at least 6 more months of chemo to go.
Debbie
You and Jo have been on my mind recently. Your situation is so difficult in that you want to be informed and Jo seems happier to know the minimum. I am somewhere in the middle. With my recent PCR test, that was negative praise God, I started to read the report in more detail and began to get concerned. I finally had to talk myself off the ledge and rest in that it read "Inversion 16 not detected" all the other medical jargon is beyond my understanding.
Pathology reports are very hard to decipher for laypeople like ourselves. My perspective on Jo's situation is this, she is being treated at THE BEST possible place. If I relapsed, I would try to be treated at MDA. More than anyone, they know how to treat her. As you know, Jo and I have/had the same issue-very slow count recovery from consolidation, with both of us receiving reduced doses of chemo. Also, we both have/had Inversion 16. The only difference is that Jo is FLT 3 TKD positive, if my chemo memory serves me. At one point of my drawn-out consolidation when it looked like my platelets would never recover, my head ONC mentioned I may have to consider SCT. That conversation made my platelets sit up and take notice and they jumper right up-thank the good Lord.
I say all this to remind you that Jo is being treated by the best. If she has relapsed, you would know it-as the next course would be SCT. Her docs are focused on not losing momentum with chemo just as mine were. I would not interpret that as a negative but rather as a positive.
Please know you and Jo are in my prayers.
Blessings,
Julie
Oh so glad to hear from you again. Let me start by saying I'm no expert or in medical field. But As someone who has read every path and cytogenetic report I could get my hands on, i know how torturous it can be to not quite fully understand it!!
bmbs are done to monitor for minimum residual disease. On the slide or "flow pathology" there's no active disease, but on the FISH cytogenetic (used to detect inversion 16 etc) or Karotype report (which you're referring to) they are noting specific clones or cells w chromosomal abnormalities that trigger a flag per se. And it looks like these last 2 reports are saying that this clone shows (what I interpret as) potential for disease still present. However, with that said, these cells or clones are not "behaving badly", they haven't turned into leukemia cells or pathology report would say" disease present Or active disease " and her marrow blast count would be above 5% remission threshold.
I'm summary, the docs are going to jump on this and do what is needed to attack these cells before they have time to become a problem! They will do what's best for her as far as keeping her in remission, remember, she's being treated by the worlds top medical team and facility. I know this has been an insanely long road for Jo but delaying treatment is not an option if the docs say it isn't. Like Julie once said, asked her docs to give her as much chemo as She can handle to rid the beast forever! We told our docs to throw everything try had at it and signed up for addtl studies and trials and more chemo drugs just to have the potential for a better outcome. Please tell Jo to keep her head up, and look straight ahead, it's not time to focus on having 6 more months of Chemo, it's time to focus on living the rest of her life cancer free!
Prayers your way
Xo
Debbie