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.
Hey, all -
I am confused to read descriptions of folks having undergone multiple consolidation rounds. My 69 year old father was diagnosed with AML in January and achieved remission after his induction round. Recovered well from that, and then some weeks later did consolidation round - also uneventful from the chemo-cancer end of things. Took a trip a few floors down to kidney surgery floor, where he underwent surgery to remove small, slow-growing kidney carcinoma. Tough recovery, but procedure went extremely well. Following that he was admitted for "mini" conditioning in preparation for SCT. Complications (bowel obstruction, edema of mesentary) during administration of chemo were significant enough that Dad and the medical team were in agreement that completion of SCT was not advisable at that time, so the whole thing was tabled.
He is home now, feeling much better, and trying to recover from the last chemo regimen (which was completed as though he were going to proceed with SCT). He is really bummed that his counts are as low as they are, but is glad nevertheless that he feels well enough to take some pretty decent walks to the beach (2-3 miles). He has occasional "situational" vertigo, which is bothersome, but not terrible, I guess.
When he saw his oncologist most recently he asked her "what now?" She indicated that his cancer treatment is complete at this point, as he is in remission, and that further treatment would only be administered were he to relapse (decitabine). Of course, in the mean time, they are following his counts very closely, giving blood/platelets when necessary, etc. He will have another BMB this Friday. Does anybody know what would explain why it is that some with AML do 2 or 3 consolidation rounds, while others, like my dad, do not? If it matters, he is being treated at Dana Farber / Brigham & Women's Hospital, in Boston.
Thank you all for the wonderful support.
Robin
I am confused to read descriptions of folks having undergone multiple consolidation rounds. My 69 year old father was diagnosed with AML in January and achieved remission after his induction round. Recovered well from that, and then some weeks later did consolidation round - also uneventful from the chemo-cancer end of things. Took a trip a few floors down to kidney surgery floor, where he underwent surgery to remove small, slow-growing kidney carcinoma. Tough recovery, but procedure went extremely well. Following that he was admitted for "mini" conditioning in preparation for SCT. Complications (bowel obstruction, edema of mesentary) during administration of chemo were significant enough that Dad and the medical team were in agreement that completion of SCT was not advisable at that time, so the whole thing was tabled.
He is home now, feeling much better, and trying to recover from the last chemo regimen (which was completed as though he were going to proceed with SCT). He is really bummed that his counts are as low as they are, but is glad nevertheless that he feels well enough to take some pretty decent walks to the beach (2-3 miles). He has occasional "situational" vertigo, which is bothersome, but not terrible, I guess.
When he saw his oncologist most recently he asked her "what now?" She indicated that his cancer treatment is complete at this point, as he is in remission, and that further treatment would only be administered were he to relapse (decitabine). Of course, in the mean time, they are following his counts very closely, giving blood/platelets when necessary, etc. He will have another BMB this Friday. Does anybody know what would explain why it is that some with AML do 2 or 3 consolidation rounds, while others, like my dad, do not? If it matters, he is being treated at Dana Farber / Brigham & Women's Hospital, in Boston.
Thank you all for the wonderful support.
Robin
I can only guess that it may be because of his health issues. The doctors may feel he is already in remission and the chemo may present more risk than benefit.
I had induction and three rounds of consolidation. But I didn't have health issues going in.
Happy to hear he is in remission and enjoying his walks. It took me several months to get my cell counts up. They still are not normal. But I can live with it and enjoy my life.
Blessings,
lily
Though I get everything under the sun, I do talk to patients here in the Philly offices about their treatment plans. I have gotten to know so many.
Often times, the use of continued treatments is 100% about whether the docs think you can handle things physically. One of my docs was honest and told me they were throwing everything but the kitchen sink at me and would only change course if they thought the treatment would 'kill" me. It is always about how I feel and what I should do vs. what I can do. I have been very fortunate in that I have an extreme tolerance for pain, so though I grumble about side effects, I am handling them as well as handling my flt3 mutation.
Interesting question, "what now". I ask myself that routinely. I am now in this fight for over one year and have had standard treatments, clinical trials and some.....hmm let's try this moments . I just wait and research.
So -I am happy your dad is in remission and I will certainly pray for good BMB results this week. Dana Farber is a super place to be getting treatment and some on this forum are treated there. I am in Phila area and my group is at Temple/Fox Chase. I also use a research group at Penn that specializes in the flt3 mutation and both groups work collaboratively.
Wishing and praying for the best outcome for your dad.
Andrea
Thanks, friends.
Robin
But it is terrific that he is walking to the beach and enjoying all that. I would give a lot to be able to do that, but I still suffer from shortness of breath following he last round, despite the fact that my counts are now all in the (low) normal range. I am so glad he can do that--it's a gift!
Shoshone
The theory behind chemo doing more harm than good is for flt3, not those who lack that mutation. In general, chemo only folks do well and there are multle consolidation rounds. Flt3 becomes drug resistant and patients with this generally do not do as well subsequently. In my case and see others, we have had to go onto clinical trials to get to remission as our bridge to transplant
Many without that issue do very well with consolidation only.eace,
Andrea
I was lucky to be flt3 negative.
In my case they decided to go with chemo only as first line of treatment, since I was flt3 negative and NPM1 mutated (normal karyotype as well). If I relapse, then it's BMT for me for sure (if there's a donor). On the other hand, I was 42 at diagnosis. Age does make a difference in AML treatment. I also tolerated chemo well (except for the last consolidation).
From what I learned, science shows that inductions plus 2 rounds consolidation are a "must", again, if the person can tolerate the (very aggressive) chemo.
So why do hospitals do 3 or even 4 rounds of consolidation? What I was told is that it's really just in case. And that nobody wants to conduct a long and big research comparing 2, 3 and 4 rounds consolidation, because they don't want to risk not giving people who would otherwise tolerate 3 rounds, enough chemo (or something like this). So in general terms, in Europe it's 3 rounds and USA it's 4.
HOWEVER, the chemo itself, of induction, consolidation and SCT conditioning, is very aggressive and risky. So I believe they look at each case separately and balance all the options, benefits and risks. And sometimes (like in my case, and maybe in your dad's case) they save the "big guns" for later, in case they're needed...
Lots of luck
Abby
I very much agree as I sit here on pins and needles waiting for my platelets to come up from 73 to 100 so I can have my second consolidation. I pretty much sailed through induction and consolidation 1. I so want subsequent sessions but if my marrow won't tolerate it I don't know what the future holds. I must say I am shocked my body has reacted in this matter because physically I feel great! I trust my docs to find the cause of my low platelets-maybe its just time God willing.
Julie
I'm thinking that the conditioning chemo he had would have been stronger than consolidating chemo so they may have thought the marrow may not tolerate more chemo well or that it is not necessary to put him at risk of infection. Just my opinion. Hope your Dad is travelling well.
Nicole
But the plateletts finally came around. I have completed three consolidations and still in remission a year later. The waiting is just awful.
Blessings and peace.
lily
Julie