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
Thank you for your support. Things are sort of ambiguous for the moment. To our immense relief, it turns out that the AML is NOT in the spine after all. We are grateful for this, as the pain associated with this would be excruciating, and would likely move very quickly (to the brain next?) Yikes.
A few have asked about treatment options - sadly, there is really nothing more to be done. Our anguish last week was around this very question - on the table were three options -
a. late nature take its course - might give us two weeks?
b. dacogen - mostly palliative - not that promising as a path to remission (in this case), but might still buy a little time
c. MEC chemo en route to transplant (10/10 match already available, frozen since June)
After much deliberation, he/we made the choice once more to give transplant a shot. He was admitted on Wednesday night, with the idea being that he would undergo relevant exams on Thursday, and begin the MEC chemo on Friday evening.
While the echocardiogram was fine, a scan of his gut showed inflammation. His doctors decided that it was too dangerous to proceed with the MEC, as it was almost certain that this very strong chemo course would worsen the gut, and even setting aside that issue, not very likely to bring him to remission.
One of the strangest aspects of this whole experience is that but for a pain in his neck (which is what prompted the concerns about the possibility of the spread to the spine), he looks and feels pretty well. Just last weekend he and my mom had a full house with us and the five grandchildren: he cooked, enjoyed conversation, danced his granddaughter around the kitchen, and played charades. He was feeling better than he had in months. The bloodwork that was scheduled for Monday, 12/2 was routine - his aspirate that day showed blasts at 90%! This, after routine bloodwork on 11/18 showed blasts at 0%. After just a couple of days in the hospital, he was seeming much weaker, and we had a real fear that he would not survive the weekend. His oncologist cried with us as she explained that there was little more to be done, and that the "disease was letting us know"...
He was discharged yesterday with the idea that he'd be in a sort of bridge-to-hospice situation. Our family gathered at my parents' house yesterday for a "Christmas" dinner. It has been confusing for all of us to see him looking as strong as he does, but know as we do that the end is still near. That said, his energy comes and goes, and the pain in his neck has become pretty bothersome. The visiting nurse was here this afternoon, and says that he is doing okay for the time being. He will go to Cape Cod Hospital for a transfusion on Tuesday morning. In the meantime, he loved his time with the kids this weekend, we were able to enjoy a short walk together this afternoon, and he and my mom are watching the Patriots play even as we speak.
So, there you have it. What a sad and confusing situation this has been. As always, your support and concern are so appreciated.
Robin
I cry as I read your post. So beautiful, yet so pheart-wrenching at the same time. A year ago I was in your exact shoes. I would do anything to take the pain and fear away from you and your family. I wish I knew the right words to say. Just love your dad as much as you can - tell him how much you love him, hug him at any and every opportunity... I am wishing you peace. xo
What a daughter you are and how wonderful your Dad is. I am heartbroken by your post. I know how precarious an inflamed bowel can be in the face of chemo, because that is one of the problems sent me to the ICU during my first induction. I wish there were a way to calm the bowel down to allow your Dad one more shot at a transplant, but I understand the dilemma and feel that you have all made the best choice. Your Dad and I are contemporaries and his illness surely hits home. All I can do is pray for all of you (for a miracle??). Your love for your Dad will get you and him through this.
Love,
Cliff
Nicole x
So, we are nearing the end, but by how much, I have no idea. If I were seeing the doctor with them, I might ask for how how long can a person walk around with numbers as dismal as his are before they succumb to infection, stroke, organ failure, et cetera. Cliff, do you have a medical opinion? It is the strangest and most surreal thing I've ever experienced to know with such certainty what the outcome will be, but to be so completely in the dark as to the how and the when of it...I am very anxious about the timing of all of this, because my greatest worry is that there should be some kind of an abrupt shift in terms of his being lucid, conscious, et cetera. My brother is going to be with him tonight (they have a plan to watch old Monty Python movies together, lol.) I am at home today in Boston, getting my house organized, and plan to return to the Cape tomorrow morning.
For now, fatigue is the "symptom" that is becoming more and more apparent. Thankfully, he's not feeling great pain at this point, though when he is bothered by it, it seems to be greatest in his neck. When it is severe, he tries to manage it with two oxycodone. He is not a great fan of how the oxys make him feel though, so when he does so, it is more or less a last resort.
So, while he is getting noticeably more tired, and spending more time in bed as these days, when he is up, he is completely lucid, talking, and "himself." He continues to enjoy an appetite - though I think that is beginning to change. My sister-in-law and I cooked some fairly elaborate holiday meals for him that I suspect he did not have much of an appetite for, but ate anyway so as to please the cooks.
We did spend the early part of the week together - did our traditional Christmas Eve together a little early, on Monday, and then spent the morning of the 24th together as we would have had it been true Christmas morning.
Strangely enough, he doesn't look nearly as sick as he is. He has a full head of hair, is not gaunt or thin, and his coloring is actually pretty good. It is a little bit of a comfort to think that the grandchildren's lasting memories of Papa will include him looking nearly as well as he did before he was so sick.
We are just so, so sad. Though of course I realize that every situation is different, if some of you with some experience of a loss of this sort have some insight as to what I might expect given where his numbers are currently, I'd be grateful for it.
Thank you,
Robin
I am so sorry. I wish I had the right words to say to make all of you feel better. My heart is breaking as I read your post. I was in your shoes this exact time last year. I would love to help you in any way I can as you make this journey with your dad. Every patient is different. Just to give you an example: my dad had a very high blast count and developed pneumonia. Pneumonia to the average person can be difficult to fight, let alone to an ill person with AML. My dad was able to beat the pneumonia days before he passed with virtually no immune system. Please let me know if you'd like to chat/write. Know that my thoughts and prayers are with you, your dad, and your family. xo
Only God can answer your question directly. There is no real. Way to predict. I have asked for my own sake when I was very sick and my doctor did not want to talk about it because she just couldn't answer the question directly. It is my hope that the time you have is peaceful and filled with love.
Peace,
Andrea :(
Perhaps I can provide a little hope. The medical folks do not always get it right. We have the example of Heather's dad (see the Alternative Treatments thread). They gave him only a few weeks and he is still surviving (as far as I know) over two years later -- they have done videos to that effect ... search YouTube for AML "Heathers Dad" and it should come right up. Heather put him on a special regimen that might not be applicable to your dad, but my point is that I would not just write him off.
Sometimes the palliative measures that are available are able to sustain a degree of quality of life and also to prolong life. While not intended to provide a cure or remission, I would certainly look into these possibilities, although I would expect that your med team has already briefed you on that subject.
We will be praying for you all, and especially for your dad and the immediate family. -- dave
I too am saddened by your post. When my father-in-law was in his final stages of lung cancer, it was painful to watch him slowly dwindle. It has to be more painful to see a much younger person, who is your father, go through all of this. My own parents are both 91 and I look at them and wonder how much longer I will have them. My dad's father died at 30 and my father does not even remember his voice. When I think about that, I am so thankful that I have had my dad for so long. As each of us who have fought AML can attest, life is a gift that can be taken away in the blink of an eye.
Robin, the hydrea may actually make a difference. By knocking down the blasts, the other cell lines may have a chance to recover. That would be so great for your dad, because he would potentially build up his hematocrit and platelets.
Although I became a member of DS only 2 or so years ago, I have been with you for your father's saga as it unfolded. To me, you and your dad have embodied a distillation of both fortitude and resignation, and I think that that attitude will help both of you through the current issues.
My prayer is that the hydrea does its job and you father's counts permit him to maintain his energy and appetite. 31,000 is not an astronomical white count and the number should decrease quickly. Hang in there, enjoy your dad, and support him in any way that you can. We should all have daughters like you. I mean that sincerely.
Love to you and your family,
Cliff
I am praying for you, your family and especially your father.
Julie
I am so glad you all got to spend time together over Christmas, there is nothing better. Your father is blessed to be surrounded with such love, I am truly sorry he and all of you are going through this. It sounds like you all are taking it day by day. Praying for guidance, wisdom , peace and comfort as you all walk this difficult road.
Take care,
Suzanne
My heart aches for you and your family. I have always felt a personal connection with you and your dad because of our parallel situations. I wish you peace and send you my prayers and my love.
Myra
I am so saddened by this news. It is a comfort that you are all together. When my father passed away many years ago (I was just 22), my first thoughts were how happy and blessed I was that he was my father.
Sal and I are praying for you, your family and your father.
With love,
Monique
Sending my prayers and lighting my candles for your Dad. What a fantastic daughter you are
Planxty