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.
There is no reason not to be sane now. The new options (either Loyola or U Chicago) are both excellent and we can all attest to the importance of a doctor/patient/family relationship when someone we love (even ourselves) are going through this process. After reading Lou's comment about his induction, I now see that some of us will experience a negative effect of the anthracycline drugs (doxorubicin or daunorubicin) that aret the "3" part of the 7+3 regimen, even after single dose. I had thought that the anthracyclines were OK until a certain critical amount is administered. I guess I was wrong. What surprises me is that the people at Rush don't have a policy agreed upon by ALL of the doctors caring for patients being prepared for transplant. To disagree so openly in front of a patient and his/her family is unconscionable. Truly.
In any event, I am quite confident that history will not repeat itself at either of the fine institutions you will be evaluating for Keir. As Lou said, let's just "get the ball rolling."
WE ARE ALL HERE FOR YOU AND KEIR.
Cliff
Keep fighting the fight and let us all know how you are dong -- we are here to help in any way that we can. -- dave
I have been praying and thinking about your situation daily and how much energy and time it takes to follow through on everything. You are doing an amazing job, an incredible job and I really believe a plan will fall into place. I cannot comprehend the first transplant MD, and his attitude. Keir is young, in complete remission and has a perfect match! I did have a long wait between my 2nd induction and my Transplant. I relapsed 11 months after chemo only, then went onto transplant. My 2nd induction was in November and put me into complete remission again and the Transplant was not until Jan 22. My transplant was delayed by 2 weeks and I was afraid of relapse but my bone marrow biopsy in Jan was still clean. I did not have any consolidation treatments between the two ( I was glad because I got quite sick and did not want to repeat it). Sounds like you have done all the right things and now it is "hurry up and wait" again. I am so sorry, praying for a peaceful weekend. Keir is starting out at a good place, just need the pieces to fit. Praying for a quick resolution and plan. You are a super power caregiver, I am tired just reading of all the effort you have put forth. Hoping you get to re charge soon.
Take Care,
Suzanne
Lori -- you are doing all the right things and I believe that they are going to pay off. At least we have to give Rush credit for getting Keir into remission. But their follow-up is terrible. I had to go to a number of doctors before I got the check off for my final consolidation treatment -- I was in pretty bad shape at that point. But the doctors looked at the alternatives and figured the risk was well worth it. I believe the folks at Loyola and UChicago will have that attitude as well.
We are all praying for you and Keir -- please do not lose hope -- things will look better shortly.
Take care of yourself -- dave
It was a long crawl for me to get from my first posting here when I was simply in pieces to having hope. I am completely broken again and I have got to figure out how to pull it together for Keir.
Please listen to Dave. His wisdom cannot easily be quantified or matched. He is saying what we all are thinking. Keir will get through this, and no matter how negative you feel about things, you will get through this too!!!
Cliff
It's going to be a tough few days ahead. We have to go back to Rush on Monday for labs and a few meetings with doctors, then on to two appointments at the University of Chicago, and on Tuesday an early cardiac MRI is scheduled with a 5:15 appointment that afternoon at Loyola. Not knowing a "plan" has been the hardest thing; as some of you know, we all truly felt thrown out of the ship without a life preserver by Rush and were shocked at the lack of follow up and support we got. It is very very hard for me to trust doctors (Cliff excepted, of course!) and it is so important that this week produces a team of doctors we can trust, especially Keir. SO many disturbing things happened this last week - not just the delay (or potential cancellation if the e/f doesn't come up in a short time), but the rejection by the transplant doctor of the cardiology clearance with no explanation (and believe me, we asked), the significant error on Keir's bone marrow biopsy, a note error on his chest x-ray (it stated he had shortness of breath when he had and has repeatedly said he has NEVER had this symptom - when I asked I was told it was an insurance issue; a chest x-ray needs a reason to be ordered - but put a symptom down of cardiac trouble when he is and has been asymptomatic really troubled us and I put that in writing) to the total lack of team communication - it's just been hard to reconcile this with a place we can trust. So we move on and we hope with every breath that the two other hospitals will provide what Rush did not.
I will keep you posted. Keir continues to do well. He feels very well and just wants to move ahead. His birthday is next week - it was the day (or the day before, depending) he was supposed to get his stem cells infused. He is fighting some depression now but we are hoping, again, that a supportive team and a real plan will make a difference.
Just try to do your best and take it one step at a time. It will probably take a couple extra days, but over the long term things will be better with one of these new hospitals. And know that we are praying for you -- dave
Move on. The right care is out there and look at this as a blessing. I wish I could send my and Cliffs team to Chicago to care for Keir. We are all here for you and Keir and this is a major BUMP as Cliff calls it, but for sure everyone has has some major bumps and has gotten through them. So will you!
Ed
I am praying that you and keir receive the answers to all your questions and concerns this week and find an outstanding med team to press forward to transplant.
Peace and blessings,
Julie
Praying and thinking about you and Keir this week as he goes through his appointments and tests. I am certain that a treatment plan will be formulated and he will be able to move forward.
Take Care,
Suzanne