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
On the morning of January 1, my dad experienced a scary bout of rigors. He was just coming out of the shower as this occurred, and felt great upset and discomfort as long as it lasted. Three or four hours later, he spiked a fever, and was told to go to the emergency room. Tests there included an EKG, which indicated that while he had not experienced a heart attack, per se, the presence of a particular enzyme (I think) was suggestive of some sort of a strain/damage to the heart. Apparently, very early on this same morning he'd experienced some pain in his arm and chest. These symptoms, along with his fever, meant that he'd be admitted. His fever persisted for the next 3-4 days, as did a headache that was painful enough that he required oxydodone. None of the cultures or tests pointed to anything very specific as a cause, so the attending physician asked my dad to consider (a) head CT and (b) lumbar puncture (um, no thank you.) In the meantime, he was being given very potent, broad spectrum IV antibiotics. He did agree to the head CT, which indicated a sinus infection. Fever persisted, as did headache - in spite of continued antibiotics. This was all very discouraging, and we felt sure that we were at "the end." My dad made clear that since he was not pursuing further treatment anyway, he had no desire to remain in the hospital, and wanted only to go home, where he'd have a last visit from his five grandchildren, and die surrounded by his family. His very wonderful and compassionate doctor agreed to this, and we took him home. Very honestly, I was terrified that we were doing so, since he'd deteriorated quite a bit in the hospital, still had a fever, and nearly collapsed on me following the effort of putting his own clothes back on. I worried quite a bit as to what kind of an experience we were about to subject our kids to (ages 9 - 14).
Made our way through what remained of a blizzard, got him into the house, and waited for the return of the kids from Boston. By the time they arrived, his fever was gone, his appetite returned, his headache less. It was a truly strange thing to witness. He had been VERY weak in the hospital - now, it was though he were a wilted plant that someone had finally bothered to water.
He is still here. No fever since, and the pain in his head and neck that had been so bothersome seem to have resolved, too. While he is on full home hospice now, as opposed to "bridge-to -hospice", there is not yet a real change in terms of the level of care he receives. The visiting nurse still just comes by twice a week to check in. As for physical symptoms, at this point his major issues (which seem manageable) are fatigue and shortness of breath. He does sleep much more of the time than had been true recently, and does use the oxygen at least a couple times a day. Where his appetite had been robust, he now has very little, and I'm beginning to notice that he looks like he is losing some weight. He has had one or two transfusions since the first, and his blasts are at about 83%. He is taking Hydrea, which may be holding things at bay for a bit.
Emotionally and psychologically, the situation is a strange one for him. He has felt so much love and support from friends and family, and had come to terms (I think) with the idea that the end was "near" -- I believe he is finding it disconcerting that this part of the experience is more drawn out than he/we thought it might be. While he isn't in any real pain, he is not well enough to actually do anything, either, and I think he's find it odd to be in a kind of holding pattern.
For us, it is a little like bracing for the impact of a car crash - only the tension is going on for what seems a long time. We are exhausted and sad. On the other hand, I am very grateful that he is not in any pain -- obviously, many that succumb to cancer will suffer terribly. I am checking in to DS all the time, especially in the hopes of hearing how our Ed is doing. I'm sorry for the detail of this update, but I though I'd offer it in case there is somebody out there reading who would be interested to know a bit of what this part of the experience might be like. I certainly have looked for those sorts of threads, especially as a way to "prepare" for what is ahead.
With love to all, and my very best wishes for your peace and comfort.
Robin
Robin
Thank you for the update, I am glad your dad is more comfortable. I know it must be so difficult but it is wonderful you all are listening to your dad and following his wishes to the best of your inability. That support to your dad is priceless. My prayers, heart and love go out to your dad, you and your family, and our Ed too.
Take Care,
Suzanne
I am sitting here, at 2;40 am, waiting for Ben to overcome a mysterious weakness and fever that has come up. Something about these wee hours that make me emotional, especially after reading your beautifully written post. Your words make me feel what you must be going through I am thankful, your precious dad has no pain.
You and you family are on my mind and in my prayers.
I lost the last post.......
I didn't sign my name,
Love to you,
Sandra......and Ben
The love of your Dad has always permeated your posts. I am so glad that you have had the opportunity to be with him during all of his travails. It would be great if the hydrea got the blasts down and allowed the other counts to rise. That might just well happen. Your Dad has been on my prayer list for quite some time, and I am really heartened by your updates, mostly by the unqualified love they express. Regardless of what might eventually happen, you have all done him such a service by allowing him to make his own decisions and being there for him always.
XO Cliff
Sandra,
Please keep us informed about Ben. There are so many viral things going around lately. I am sure that his doctors will get to the bottom of it. I had weakness, fevers, muscle and joint pains and very little in the way of respiratory symptoms just a month ago. It turned out that I actually had influenza A. You never know.
Thinking of you and Ben and praying for the resolution of Ben's current symptoms.
XO Cliff
My prayers are with you and your dad
Planxty
Robin
I'm praying very hard for peace for your dad and also for your family.
Majella x
I am all too familiar with where you and your family are right now and my heart aches. Hold your daddy, talk to him - he knows you are there and can hear you. My prayers and strength are with you all. xo
I am so sorry. I feel for you and your family and I pray that your dad does not suffer. Be strong for him.
Cliff
Julie
~~Kim