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.
Hi, all -
While I've not talked with my parents to get the full report from today's visit with the oncologist at Dana Farber, a brief text from my mom has raised a few questions for me.
The first has to do with the issue of "markers" for AML. The doctor reports that the two which were present at diagnosis are no longer there: broken 9th chromosome and NPM1 gene. I have no idea as to what the significance of this is, for better or for worse. She went on to say that this might mean that chance for recurrence will be somewhat "limited", but that his age alone (69) is still an adverse factor (for relapse). Am I to understand that this was a "good news, bad news" report? What happened to change or eliminate those genetic things?! I am thoroughly confused! Isn't the gene that gave me my hair color there forever, irrespective of whether I dye my hair? Not getting this at all, and baffled as to whether I should receive today's news as good, bad, or none of the above!
As for his very slow to recover counts, she reports that the transplant doctor has actually seen this before, and that it points to just how powerful/effective the chemo was...ok, I'll go with that, as it is just too depressing to look at it otherwise - but that it might be 3 months before the marrow finally does recover. Ok, not great to hear, but better news than it might have been, as always. Thank you all, as always, for your generosity in sharing so much of your own experience and understanding of this most baffling disease!
Confused,
Robin
While I've not talked with my parents to get the full report from today's visit with the oncologist at Dana Farber, a brief text from my mom has raised a few questions for me.
The first has to do with the issue of "markers" for AML. The doctor reports that the two which were present at diagnosis are no longer there: broken 9th chromosome and NPM1 gene. I have no idea as to what the significance of this is, for better or for worse. She went on to say that this might mean that chance for recurrence will be somewhat "limited", but that his age alone (69) is still an adverse factor (for relapse). Am I to understand that this was a "good news, bad news" report? What happened to change or eliminate those genetic things?! I am thoroughly confused! Isn't the gene that gave me my hair color there forever, irrespective of whether I dye my hair? Not getting this at all, and baffled as to whether I should receive today's news as good, bad, or none of the above!
As for his very slow to recover counts, she reports that the transplant doctor has actually seen this before, and that it points to just how powerful/effective the chemo was...ok, I'll go with that, as it is just too depressing to look at it otherwise - but that it might be 3 months before the marrow finally does recover. Ok, not great to hear, but better news than it might have been, as always. Thank you all, as always, for your generosity in sharing so much of your own experience and understanding of this most baffling disease!
Confused,
Robin
From my limited experience it is GOOD NEWS. If markers of AML are no longer present that is a very very good thing. Everyone has had troubles with counts returning quickly and many on this site have been in remission for a long time still waiting for counts to normalize. Happy to hear the news
Ed
Abby
Now the chemo is trying go kill that one stem cell that is creating all of the problems. However, to do that it has to get a whole lot of good blood cells along with it. It seems to me to be a huge crap shoot. Its a numbers game as to whether the chemo gets the offender or not. I expect that those who "fall out" of remission were in a situation where the bad stem cell went dormant for a while and then for some reason got active again. I think you are wise to be optimistic about a long time it is taking for your blood number recovery. While this does show that they may have done some injury to the marrow, it also shows that there is a greater chance that they got the offending stem cell. I was certainly glad that they hit me with all that I could handle (and then some). It has knocked out some of my capabilities permanently, but I can live without them. I cannot live with leukemia. If someone sees where this model is wrong, please let me know. It seems rather simplistic to me, but I am going on what I have seen on the Internet. I hope it helps -- dave
Thank you so much for the reassuring messages and for the very helpful explanation as to how some of this stuff works. Setting aside the stress and worry of it all, you could actually see what is kind of fascinating about the science behind this, and why some people are drawn to it for their professional practice (thank god for those people!!!)
I find it so interesting that this is a place where the patients (folks like the three of you!) do most of the caretaking of the rest of us. Grateful, as always this community is here. I try to be pretty level and conservative in terms of what I share with my parents, lest my worrying add to their burdens, and the need to function well with the day to day of family life means I don't want to vent too much at home, either. It is a relief to be here and know that there is the space to ask anything or just release a little bit of steam. Thanks, all.
Robin
--adding a footer in case it is a help to some newer members looking to get the lay of the land!
(69 year old Dad dx with AML in January, in remission since Feb / chemo only, to include conditioning chemo for SCT which did not happen due to complications)
Just to add my interpretation is the DNA mutation is that of the myeloid cell DNA chromosome. There are different mutations (translocations - where different chromosome pairs switch places) that are apparent in AML and this helps the Drs determine the prognosis and treatment, some are more favourable than others. When you have chemo and the myeloid cells are destroyed the biopsy taken after checks the new cells for the mutation. If it is still there then it is almost certain of relapse, no mutation is great news and the hope is it stays that way. Apparently as we age the cell chromosomes sort of weaken and this makes it more susceptible for mutation or translocation than a younger person, this being the reason the average AML age is about 70. I hope this helps you to comprehend it.
Concentrate on the fabulous news of the remission and your Dad getting back to good health and his holiday plans!!
Nicole x
Take care -- dave
I wish I had information to add, but I do not. I focused so much on flt3 that everything else went by the wayside. What I researched a year ago in terms of markers has long since been purged from either chemo or radiation.
I am always thrilled to hear that some people do so well with chemo only. It actually blows me away that just within the last 3 years, so much has been discovered.
I also believe a positive outlook is essential. I remember my nurses where I had my induction say to me 'our sickest patients seem to do the best'. Last year this time I completed induction and was in ICU on a ventilator. I remember waking up after my weeklong stay in ICU saying, 'what day is it.' I then told my doctor I would be going home in a week. He said that was a good goal. I was home 8 days later.
In terms of blood counts, it takes me a very long time for my counts to recover. Even now, getting chemo it takes forever and what I currently get is consider 'not so toxic'. I do not get neupogen, only blood and platelet support as needed. It is suspected that the neupogen sent me on the sliding scale to ARDS after induction, so neither I or any doc is willing to take any chances. We just have to be careful about precautions.
At 69, not old, just a little bit older, that's my new favorite saying anyway.
Best to you. Prayers for your dad and all of his caregivers!
Andrea