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.
Well, Jo had her 3 mo BMB yesterday and they have decided to continue chemo for another year. She was really disappointed. Dr. Bothakur told her that her BMB in June still showed some inverted 16 cells but that the one in October did not. However, one clean BMB did not mean cure and they felt that since they have had to lower her chemo dose so much (she is still having rather slow platelet recovery) that he felt another year of chemo was necessary.
I told her, "Hey, if it means I get to have you around till we are both 80 or 90, bring it on." Of course I'm not the one who actually has to contend with all that it entails. She's disappointed but we will get her through it!
Debbie
I told her, "Hey, if it means I get to have you around till we are both 80 or 90, bring it on." Of course I'm not the one who actually has to contend with all that it entails. She's disappointed but we will get her through it!
Debbie
DaveJ
Now, I am a bit confused because I have never heard of chemo being quantified by the year. Is she on some maintenance program just to keep everything under control? Do you know what her last BMB showed as far as the percentage of blasts? I am thinking that perhaps she is in the MDS range at this point and the treatment for that is different than for AML. I expect that the presence of some inverted 16 cells is evidence that one or more mutant stem cells are still active and perhaps the continued chemo will be able to either kill or keep them from reproducing.
Thanks for keeping us up on Jo's progress, and I do believe that it is moving in the right direction. We will continue to pray for your entire family -- dave
He told her that if they come back, they tend to come back quickly and very aggressively. He has not mentioned MDS at all. He has told my sister that she is a most unusual patient and that her body doesn't seem to react the way he is used to seeing. Even the local oncologist who does her weekly labs says she is an unusual patient. I joke with her and tell her that I always knew she was a little off :).
Anyway, we will make it. I will have to ask her what he said about any percentage of blasts if there were any and if he has mentioned MDS specifically.
Debbie
To clarify daves comment, You can have small amounts of these cells and still have no blasts and no leukemia. (This is considered minimal residual disease) They are mutated chromosomes basically but are not currently producing leukemia blasts at the time. Any Inv16 cells picked up on the fish test (which is what they run from the bMB) will automatically be considered AML not MDS no matter how few blasts there are, bc it is a specific cell mutation to AML only (remember tis is what yony had, so I've done all the possible research on it)
Hope this helps
Jo will make it through, trust the doctors and keep in her ear that it's about the long game! You do not want relapse, it's harder to treat as her doctors have said. Best of luck to Jo
Lea
Debbie
Tell Jo that when I was just at Sloan Kettering, I met this lovely woman in the waiting room who has the same cytogenetics as Jo and has had the same issues with her chemotherapy. Her marrow too is now negative and she feels wonderful. She, like you and Jo, are philosophical about the protracted chemotherapy, but she has been doing so well, she is content.
I gave her the "thumbs up" when she went off to have her vital signs and see her doctor, and her smile was worth a million dollars. I thought of Jo, so now there are two compatriots, who, although following a trajectory a bit different from most of us, are doing just fine.
Cliff
What an awesome explanation. As a fellow inversion 16ner I have also experienced many fish tests of my eight bmb(s) and have a pcr test on my peripheral blood every other month. My understanding is the pcr test is the next best thing after the fish test. I have been very blessed on that I have had no residual disease since my consolidation ended. One thing I learned from my experience with these tests. There are several sub types of inversion 16. I have D. Thank you again for the explanation. Always praying for your entire family.
Debbie,
I am happy to hear that jo is okay with continuing treatment. On a way, I am envious. I would have loved more chemo. I had no adverse effects and would love to throw the proverbial kitchen sink at aml. I had to beg for my final round because it took so long for my counts to recover. I'm all about killing every single one of those cells, blast them into oblivion.always praying for jo, my inversion 16 sister.
Cliff,
I love your story about your friend in the waiting room. I love going for my monthly labs for that reason. Getting the opportunity to cross paths with someone from treatment or getting the chance to show someone there is life after aml. I'm also a very slow count recovery survivor and love to hear good need stories.
Bless you all
Julie
I hate going to the hospital....except for that one thing that makes you feel good. I see all of the patients in the waiting room, some with gloves and masks, others just with masks, some with no hair, some with the peach fuzz that we all know and love (hate). I make it my business to talk to as many as will listen to me about hope, and faith, and THE FUTURE. When one of my children accompanies me, he or she invariably says that I talk too much. If that is the case, then I am doing my job well.
Peace and God Bless You for your wisdom,
Cliff
I should clarify, I sometimes dread my monthly labs because of the anxiety that goes with that process. But I do love going back to see mymed team and the people in the waiting room. I could opt to have my labs much closer to home but i always go back to "east eight" the floor dedicated to the acute leukemia and bone marrow transplant patience. I love to talk to other in the waiting room. I still wear my mask because I am a germ a phobe. That mask is the great equalizer. Inevitably, I'll lock eyes with someone and try hard to smile with my eyes and I start chatting. My dearest husband had not missed a visit and he always tells me I talk too much.
Bless you
Julie