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.
Good morning, all -
You all have been so supportive and kind in sharing your experience of AML, I thought I would give an update as to where things stand today. First, after much angst, Dad has made peace, it seems, with the idea of the transplant.
In the end, it came down to the pretty simple realization that for him, chemo alone would almost certainly bring relapse, and that SCT offers his best hope of long-term survival. The team at Dana Farber says that we do have a donor (a 21 year old male), and that the plan is to complete the SCT in the next 3-4 weeks. It is not clear whether another consolidation treatment will be necessary before then - Dad is in remission now. A BMB was done on Friday of last week - hoping for at least preliminary results today or tomorrow. He is at Brigham & Women's today for a kidney biopsy - an MRI some weeks back did show a spot that (angiomyolipoma?) is thought to be a benign tumor there. Obviously, that needs to be confirmed before he proceeds further.
We also did lots of reading, and found the article below to be particularly relevant for our situation.
To Transplant or Not to Transplant
for Adult Acute Myeloid Leukemia:
An Ever-Evolving Decision
Aaron T. Gerds, MD, MS, and Frederick R. Appelbaum, MD
from the journal: Clinical Advances in Hematology & Oncology Volume 10, Issue 10 October 2012
For now, he is feeling pretty well. We were able to spend Easter together as a family, which was just wonderful. Of course he tires pretty easily, and every so often feels "cancer-y" - but for the most part, is doing well. He has not had to have a transfusion in 3 weeks, I think.
Anyway - worried though we are about what might be the complications associated with the SCT, we are hopeful that because a few (key) things have gone well thus far (tolerated chemo, achieved remission, found a donor, etc.), that he/we can weather what's ahead, too.
All the best,
Robin
You all have been so supportive and kind in sharing your experience of AML, I thought I would give an update as to where things stand today. First, after much angst, Dad has made peace, it seems, with the idea of the transplant.
In the end, it came down to the pretty simple realization that for him, chemo alone would almost certainly bring relapse, and that SCT offers his best hope of long-term survival. The team at Dana Farber says that we do have a donor (a 21 year old male), and that the plan is to complete the SCT in the next 3-4 weeks. It is not clear whether another consolidation treatment will be necessary before then - Dad is in remission now. A BMB was done on Friday of last week - hoping for at least preliminary results today or tomorrow. He is at Brigham & Women's today for a kidney biopsy - an MRI some weeks back did show a spot that (angiomyolipoma?) is thought to be a benign tumor there. Obviously, that needs to be confirmed before he proceeds further.
We also did lots of reading, and found the article below to be particularly relevant for our situation.
To Transplant or Not to Transplant
for Adult Acute Myeloid Leukemia:
An Ever-Evolving Decision
Aaron T. Gerds, MD, MS, and Frederick R. Appelbaum, MD
from the journal: Clinical Advances in Hematology & Oncology Volume 10, Issue 10 October 2012
For now, he is feeling pretty well. We were able to spend Easter together as a family, which was just wonderful. Of course he tires pretty easily, and every so often feels "cancer-y" - but for the most part, is doing well. He has not had to have a transfusion in 3 weeks, I think.
Anyway - worried though we are about what might be the complications associated with the SCT, we are hopeful that because a few (key) things have gone well thus far (tolerated chemo, achieved remission, found a donor, etc.), that he/we can weather what's ahead, too.
All the best,
Robin
It was so good to read your update. I had been wondering about you and your dad. It seems that our situations are somewhat parallel so I appreciate your insight and the research that you have done. Please continue to keep us posted as to his progress. I have included him and your family in my daily prayers.
Myra
Thanks for referencing the research. I read it after speaking with one of our doctors. He is new to David's case and says that he may only be able to tolerate chemo and not a transplant due to his advance age (68 next week). This is different from his previous doctor who said that transplant is the only option. I suppose that we will have to see how he continues in his recovery and how quickly his counts rise. Thanks for allowing me to vent. Sometimes this is more than I can handle.
Myra
The age at which transplants are possible has risen considerably and people as old as 70 are now tolerating the prelude with tailored doses of chemotherapy +/- radiation. I wish David could be evaluated at Memorial Sloan Kettering for yet another opinion. I trust these people for being cutting edge and very creative. I would truly wonder what they would recommend. In the meantime, I pray that he continues to make progress. If I can help in any way, let me know.
Cliff
Thanks for your input. If it comes to it, I will definitely ask you for a reference to Memorial Sloane. I suppose that I'm pushing too far into the future at this point. I realize that we are still in the beginning stages. I was just a little put off by this new doctor who stated that transplant was off the table after seeing him for only 2 rounds. I saw his original doctor this afternoon and he told me that transplant is definitely on the table, so to speak, and that we just have to wait and see how everything shakes out. Thanks for letting me express my frustration. On another note, his fever seems to have subsided and we are now waiting for his counts to go up.
Myra
Your experience highlights (in such a frustrating way!) how much at the mercy we are of the "experts." I have no idea what might explain the variance between what the first doctor told you and what the second said instead. I sincerely hope that they will be able to offer you a clear and compelling case for recommending one course or another. We have found it stressful enough to absorb our medical team's recommendations with them being all on the same page - I'm sure it's harder still when there appear to be differences in terms of how best to approach treatment.
If I am not mistaken - and I hope that Cliff or Dave will correct me if I am, it's not advanced aged per se that is the most relevant thing, but rather, that with age so often comes "co-morbidities" of one sort or another: issues w/heart health, diabetes, hypertension, etc. In the case of someone 65+, it appears that in the absence of these other concerns/conditions, and given the likelihood that AML will return without SCT, advanced age *alone* is not a reason to exclude SCT. My Dad will be 68 in April, too! Hang in there, Myra.
dppmeeks - thanks so much for your kind words of encouragement. I am very glad to know that this course of treatment feels like it was the right one for you! Glad for your advice, and will make every effort to focus on all that is positive.
Thanks, all!
Robin
Robin
Having had the rare chance to have done both. Chemo only - which relapsed and currently re inducting for the hope of a transplant, I can tell you this is a tough decision. Once one is made then you are released to be one with it and go forward as best you can. I will never look back at the what if's or should I have... This is our option. It is different for all. If he has made peace with it then I welcome him as a fine friend and battler of AML as we will likely be going through it at the same time. All my love to you and Myra and David and all the wonderful people on this board.
Ed
Peace -
Robin
When I said in one of my previous posts that I like menus with one entree, I was serious. I can honestly say that I was happy to have my decision about chemo or transplant made for me. There actually was no decision for me to make. I was told that since I was in the intermediate risk group, my best bet would be transplant. I can easily see why Eddie made his decision to go with chemo and it was the right one. We are very lucky (if I can actually say that) that AML is a treatable disease and that we actually have options.
I think that as a physician, I know what to look for in my own doctors -- compassion, caring, and most of all...SMARTS. I want to trust my doctor, and I do. I wish I had been told some of the potential issues down the line after having received total body irradiation as one of my conditioning regimens, but other than that, I think that my doctors have been very straight with me. My transplant doctor answers my questions without evasion. The nurse practitioners are knowledgeable. That's all I can ask.
You should come up with any question that you want answered. Having been through so much of this, I may be able to provide some information, but you actually need to trust the experts. I speak out of love, really, because I don't want anyone to needlessly worry. This horrid situation is bad enough without that. But I will be the first to admit that I know what I don't know. Sometimes I take a step back, for fear of misleading anyone, but I always end up reading the literature and trying to distill something that might be helpful. Nevertheless, I am a patient through and through when I see my physicians, and I believe that that is the appropriate way to be. I ask questions, but I don't interject my two cents. I think that there has been one instance where I have overstepped my bounds on this site, and that is with Phil. Phil has become my pal, and I told him that I do not agree with constant penicillin treatment. I think it has given him chronic thrush. I told him my opinion, because I care about him. Nevertheless, I am treading on thin ice, because I am neither a hematologist or his doctor. I know he takes my opinions for what they are worth and does not resent my meddling, I just feel strongly about the antibiotics. They do not belong in a post-transplant armamentarium. Robin, I am glad that your Dad will be going the transplant route. I hope the same for Myra's David. Getting conflicting statements is terrible when you are asked to make a decision. One additional opinion (from Solomon the wise -- just kidding) should help clarify it all. Medicine is an inexact science, and the correct path to take is not always clear. That's where another expert opinion can be of help. If there is any anxiety and trepidation about the right road to take (all of which are rutted and rocky), I would certainly seek out such an opinion.
Cliff
Cliff
I also do not know what the conditioning regimen will entail. Conditioning and consolidation are not the same thing, right? I would love to better understand what is the difference between the two. Presumably, even if a consolidation round is not called for, some kind of preparation has to happen in advance of the SCT itself, right? Guess I'm off to sift through old threads again, lol!
Excited and worried in equal measure.
Robin
I am truly happy for both of you. It is the way to go. I got one consolidation round (I think) and then was admitted for the transplant. The chemo you get at that time, called conditioning, essentially wipes out (ablates) the marrow, leaving it ready to take on the new marrow. When you think about it, the whole concept is so awesome and we all really have to be thankful for all the very poorly paid researchers who have devoted their lives in the service of mankind,
There is truly something supernatural about a transplant. After receiving the cells (a very anticlimactic event) you wait until they engraft. That takes a bit of time, but then once they do, your numbers start to rise quickly. It is even more interesting when you are not the one getting the transplant, LOL. Just as you said in yesterday's note....just look at all of the "key" things that have gone well for your Dad. I think there is a message somewhere in there, and that message is to take a deep breath and go for the gold. I see an Olympian in your Dad's future. We're with you Robin.
Cliff
My primitive understanding is that it differs from patient to patient. I had induction and one consolidation a 3 week rest period and straight to conditioning for transplant , I was in remission since induction and remained that way. However a friend on my unit had 3 consolidations prior to transplant I don't know if this was because of relapse or they had trouble finding a match.
The control freak in me likes to think that I made the decision on transplant however that decision was made for me due to my poor cytogenetics. A 2nd opinion was not an option as we have only one transplant unit in the whole country. If your dad is happy with the decision you need to run with it and put your faith in his onc. I always remember at the start of conditioning I said to my onc "well kill me or cure me" she said I'm here to save that's why I get up in the morning.
Keep strong
Planxty
That was a beautiful note. Your oncologist sounds great. I love the way she expressed herself. I am sure she means it.
Robin,
Go for the gold. It's out there. Love to you and your Dad.
Cliff