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
Myra
Not so, as it turns out. He is in complete remission, apparently, and in good enough shape that his team would like to go ahead and proceed with the SCT on May 28. He was able to have a discussion with the head of MGH's transplant program, Dr. Spitzer, who both agreed with the Dana Farber team's approach to his treatment and offered reassurance that his risk for gvhd of the gut is no greater (due to his bowel adhesions) than it would be for someone without this issue.
While my Dad would have preferred to wait just a few more weeks before undergoing the SCT (in the hopes that we'd first have a weekend on the Cape together as a family), his doctors do not want to reschedule, for fear that his donor might not be willing to re-schedule yet again (definitely don't want to lose this 10/10 match from an unrelated 21 year old male).
So, we are back to feeling excited and anxious! Will update as all this unfolds. Be well, everybody. Thinking of you all.
Robin
Good luck to your Dad, he is lucky to have your support. And I've heard that young males make the best donors - something about them being at an age of feeling invincible!
Nicole
I am so happy to hear that things have really worked out well. I am not being facetious when I say "thank God for that CT scan." Now your Dad can focus on his next adventure. He'll soon have a 21 year old's blood coursing through his veins. Kind of makes you feel young. My marrow is from a 28 year old. These "kids" should be proud of their concern for others. Giving any part of me when I was their age was absolutely out of the question. Society may be screwed up today, but there is still a lot of love to be tapped into, and we should all just enjoy each others magnanimity.
Love to you and your Dad,
Have a wonderful Mother's Day with your family.
Cliff
It fills my heart to know young people are giving of themselves to save lives. It is such beautiful thing they are doing. There are some really wonderful and loving people in this world. Just look what happens when there is a disaster, how people pull together and take care of each other.
Lily
It has gotten so that just seeing your names makes me smile. I hope Tina had a good Mother's Day. I pray every day for the two of you, because deep in my heart I know that the good will be rewarded, and you two are as good as it gets.
Keep loving each other as I know you do. Sometimes good things happen when they are least expected.
Cliff
Great news to hear that your dad did so well with the surgery and is slated to have his transplant. I wish him well and know that with your support he will do beautifully!
Myra
WBC 6.1
RBC 3.51
Hemoglobin 10.6
Hematocrit 32.3
Platelet 229
Blast 0
Emotionally, he seems "low" -- wasn't feeling great yesterday, especially as the day before had worn him out physically, and is feeling something like dread at the thought that he will be feeling this way for the year to come. My mom tends to head in the other direction, in terms of her outlook, and was encouraging him to believe that with the SCT he will be feeling "much better" than he does now.
It is a funny thing to feel like I want to support him in a way to help him feel more hopeful about what's to come, and yet with my mom, to have her temper her very rosy view of things just a bit. I am a little bit concerned that she is going to be in for a shock as his caregiver, and not prepared for the possibility that he might actually feel worse before he feels better. But then, what do I know? I'm just the worrywart who obsesses over AML threads on dailystrength and the LLS boards, lol!
We will be together as family for Memorial Day weekend, and he will be admitted to B & W on Tuesday the 28th. Chemo will start the following day. I will be following Ed's progress very closely - is anybody else here doing their SCT that same week, I wonder? I think that day 0 will be on June 3rd or so.
I know the dread he feels. I am a mixture of your mom and dad emotionally. I feel the dread and this board has given me the rosy outlook as well. He and I will be neck and neck as we triumph together. I go in on the 3rd to start chemo, but day 0 will be around the tenth after my chemo. His will likely be around the 5th I imagine. We will run this race together and I will be right behind him every step of the way!
with love and dread and rosyness!!!
Ed
Ed, Hang tough, your up to it. One day at a time.
I hold onto the fact that many have been there,done that, and came through it.
Much love,
lily
Your transplant journey will be 6months to the day that my transplant took place. I was the first for 2013 on Jan 3.
I did nothing but visualize the entire time that the new marrow was filling every gap I had. I had actual marrow, so it took a couple of hours.
I had so much confidence in my pre-transplant conditioning that I did not fear transplant at all, but instead saw cure. My docs and nurses monitored me so closely. My family was in and out. My son sat in the recliner in my room, by my side, asleep most of the time, but I didn't care.
I pray that you all get the strength and optimism that the transplant is the answer and the path God has laid before you.
Just believe!
Peace, love and hope to you all,
Andrea