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.
I will start by saying I am in a state of shock and confusion and apologize for any disjointedness:
They want to delay the transplant 2 weeks to see if Keir's heart improves with the meds, but the cardiologist signed off - this is the transplant doctor's wish. He explained it by saying that the procedure itself could be hard on the heart, which I understand, but the cardiologist felt Keir would do well - which was what we were told would be the clearance last week. Then there was a contradiction in the two biopsy reports.
I am in such shock and confusion that I am not thinking straight. I will talk to his hematologist onc tomorrow - the one I spoke to this evening; she called me from home. She started off by saying, "Lori, I am NOT worried." She then went on to say she felt the one of the two reports (surgical) that had the line "evidence of residual leukemia" was an error, because it contradicted itself (earlier in the report it said no increase in blasts) and the flow cytometry which said "NO evidence of leukemia."
She sounded very determined that Keir was okay to have this transplant and would get a second opinion if the meds didn't increase the e/f in two weeks. She said the cardiologist felt it was safe to proceed. She was willing to wait two weeks but no more and clearly disagreed with the transplant doctor.
I simply do not know what to do or think.
They want to delay the transplant 2 weeks to see if Keir's heart improves with the meds, but the cardiologist signed off - this is the transplant doctor's wish. He explained it by saying that the procedure itself could be hard on the heart, which I understand, but the cardiologist felt Keir would do well - which was what we were told would be the clearance last week. Then there was a contradiction in the two biopsy reports.
I am in such shock and confusion that I am not thinking straight. I will talk to his hematologist onc tomorrow - the one I spoke to this evening; she called me from home. She started off by saying, "Lori, I am NOT worried." She then went on to say she felt the one of the two reports (surgical) that had the line "evidence of residual leukemia" was an error, because it contradicted itself (earlier in the report it said no increase in blasts) and the flow cytometry which said "NO evidence of leukemia."
She sounded very determined that Keir was okay to have this transplant and would get a second opinion if the meds didn't increase the e/f in two weeks. She said the cardiologist felt it was safe to proceed. She was willing to wait two weeks but no more and clearly disagreed with the transplant doctor.
I simply do not know what to do or think.
What a roller coaster ride aml is. I have no experience with the bmt pre tests but I have experienced conflicting bmb results and have been warned by my med team just yesterday to expect more. during induction they had to do two to three bmb to confirm preliminary remission. I learned later there were still some questions so they performed a fourth a week after induction ended. Now as I have completed all my consolidation treatments, a final, you and I both know this won't be the final bmb, with a pcr which will not only check for blasts but also check for any residual inversion 16. The docs have already warned me that this test is extremely sensitive and sometimes shows false positives.
I would trust the transplant team on the delay due to keirs heart issue and wait to get further classification on the biopsy. But I know I would stress as well. I am praying for you both.
Blessings
Julie
I haven't been on the site for a while, I'm sorry to learn you guys are hitting these roadblocks. The BMB Vince had a month after his induction came back as 2-3 % blast. Then at the bottom of the results it said those blast that were found were still consistent with the original leukemia (aka minimal residual disease). The doctor told us to meet the guidelines of remission the blast needed to be under 5% and normal blood counts should have returned. So we were officially in remission. Now I didn't like the one sentence in there about blast found that were consistent with the original leukemia. The doctor said this is to be expected (especially when you have stable mutations like NPM1 and the FTL3-TKD). The current test they have are very sensitive to picking up even the smallest amount of these mutations. This is why they do consolidation treatment. In the past they didn't know about these mutations (especially in those with a normal karyotype) or have a good way of detecting them. But they did know induction wasn't enough for most and further treatment was needed or the leukemia would return. Consolidation (either chemo or BMT) is what they do to "clean up" what is left after induction. After 4 additional rounds of consolidation chemo he had his next BMB. This time the results came back still 2-3 % blast. But now there was no evidence of any leukemia blast (no NPM1 or FTL3-TKD mutations were found). No minimal residual disease was found. I hope this info helps! Best of luck on the upcoming transplant, he is going to do great!
:) Julie
:)Julie
His heme onc - who is very good - has done this before (referred patients to a particular transplant guy at Loyola) with success and said that occasionally even the referral will persuade the transplant doctor. If the cardiologist had not cleared him - with no reservations - I would feel differently, but an extremely experienced cardiologist who has worked with pre-transplant patients many times signed off on this (with meds added) and we were told - at that time - that cardiac clearance was needed. No explanation as to why it was overruled. The risks to Keir of delay, say his heme/onc, are significantly greater than of doing the non cardio-toxic chemo with transplant.
Praying for God's Devine intervention will guide all the docs in their decisions.
Peace and blessings,
Julie
Amended: 12/10/2013 by Brett Mahon, M.D.
Previous Signout Date: 12/9/2013
Reason: Typographical Error Incorrect comparison to
prior marrow; should read "without evidence of residual leukemia"
Seriously. A typographical error. SMH.
However, the transplant is still very much in limbo. The cardiac clearance is fine: I spent two hours on the phone with the cardiology office yesterday asking a million questions. Problem: The transplant doctor wants his e/f to be 40 in two weeks and the meds he is on will likely not produce that as the e/f comes up very slowly. This was NOT what we were told before - we were told clearance and it was a go. However, for whatever reason (never explained to us) the transplant doctor is now wanting to wait. But his heme/onc is convinced waiting is worse and that the team at Rush will not go through with the transplant so we are going to Loyola to see if they will proceed (fast) on Tuesday. She said in her experience this can be done well. The transplant team is having a meeting at Rush today and presumably will discuss Keir's situation. If they won't, I am praying Loyola - an excellent place - will. The heme onc says she's never had a referral turned away, so we're hopeful on that. Keir's heart will improve, says the cardio - may already have - but the e/f comes up slowly and there is not time to wait in this case. Nonetheless he did not feel that in the absence of cardiotoxic drugs this was an increased risk. We are very puzzled as to why the transplant doctor suddenly changed the rules.
I was fortunate to have multiple teams to get advice. My Penn researcher would offer his opinion and my hem/onc and transplant doc were fabulous collaborators. I was fortunate that even if someone disagreed, I always had someone else to ask and my docs knew I would. I now have (3) 3 inch binders full of questions and answers.
I am praying for things to turn in Keir's favor so that your anxiety is diminished. The second opinion is a good one to get. I had 4.
Peace, love and hope,
Andrea
I am so glad that you are giving this type of advice to Lori. None of us should feel bashful to ask any questions that we have. When I was working (and hope too soon), I would always ask patients if they had any questions at the end of our discussion. Many did, and were just being courteous by not asking them. Remember that patients are still consumers, and I believe that doctors (myself included) owe it to our patients to not only minister to their bodies, but also to alleviate their anxieties to the greatest extent that we can.
I did not like the way Lori was allowed to go through all of this. Just not fair.
Cliff
I'm sorry things have gotten so messy for you and Keir. My EF was real low after induction but hey put me on Coreg and when it was time for transplant I was around 40 or so. But that took a while so you're absolutely correct in insisting that they get the ball rolling. I know I was concerned about the consolidation lasting until transplant so I would go into transplant with a solid remission. They told me that's better and you want to gain every advantage you can. He's already been through two consolidations. If the cardiologist doesn't see a problem I don't understand the transplant doc's reluctance.
Another thing that I find strange is the fact that the hem/onc is at odds with the transplant doctor. I thought these guys were part of the same group. Even if not they should have these discussions privately and come to you with a consensus recommendation. They're making you crazy and frankly I find it to be very unprofessional.
But all this has not changed the most important facts. Keir is young, strong and otherwise healthy. He has a perfect match donor. He's in Chicago, a city with no shortage of first rate medical centers. And he has a terrific advocate in you.
This month there are a lot of commercials on TV for the Jimmy V Foundation. Its motto is "Never give up. Don't ever give up." I know you never will. Good luck and I hope things turn around tomorrow.
Lou
If Keir should need more consolidation to bridge to transplant, just as a precaution, are there non cardio toxic options? He has always had high dose cytarabine for consolidation. That is my main concern about delay - any further damage to his heart e/f.
I feel in some shock over the treatment we received by the transplant team doctor at Rush. To tell me - over the phone - that my 29 year old son, in remission and supposed to be 2 days away from transplant admission was being tossed over the side of the boat, was pretty devastating to hear. He literally said - in response to my question, "but might more delay and consolidation damage his heart more?" - "Well, if it does I guess nothing else can be done, period."
And with that he said goodbye and hung up. Again - Keir passed every single other test for pre-admission. He is on the cardio meds, they just need time to work. The cardio signed off. I know I'm repeating myself - but why would he say such horrible things under the circumstances? Both my husband and I are still in some shock.
I am having another phone day, where I make all the calls to this and that hospital and fax this or that to make sure nothing delays things from that end. Andrea, four consults - wow. I know how fortunate we've been up to this time in terms of bumps. I know how fortunate we were that the "evidence of residual leukemia" was an error. I know I have to pull myself together for Keir. But I am wearing down in a way that is worrying me a bit because I notice I am beginning to babble on the phone and fight tears when speaking to these various places about this. Louzac, I don't know if Keir's e/f was down right after induction (which is possible) because no one did a bloody echo until last week. And then no one told us that unless the number got to 40 there would be no transplant despite cardio clearance (if they had, I could discussed that with the cardio doctor and made other plans). I told all this to the transplant doctor and he got angry at me for challenging him.
Ed
We just went to another transplant doctor at a different hospital and moved forward. Each case is different - my dad had relapsed very quickly in the past so there was an urgency for the transplant. We took the advice of the oncologist, trusted her judgement, saw another transplant doctor (upon her recommendation) and here we are today.
Each case is different. Go with your gut. Second opinions are good. Trust yourself and your oncologist. You have been through it together and you know Kier best.