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
So glad to hear the news. 9 holes of golf! Amazing. The body is usually a good guide about what we can and can't do. If your Dad were not feeling so much better, then he wouldn't be doing what he is now doing. Don't reign him in too much.
With regard to his numbers...they will return. It's kind of ironic that those of us on this site, who (or at least I) took their health for granted, now watch the numbers as if we were at a sporting match. This is a race to better health, but not a race in the most literal sense. I know it's hard to believe, but feeling well trumps ANC counts and all the rest.
Sending vibes to your Dad's marrow. "Wake up, sleepy-head!"
Cliff
Thanks for your thoughts on the latest with my dad. Dave, I always keep in mind your cautions around keeping things clean, avoiding germ-y situations, and overdoing it with activity. I'd give anything to see him have an experience like yours (continued remission with chemo only, even as he approaches 70), and therefore give your advice a lot of weight. The tricky piece of this, as far as our family's dynamic seems to go, is that I have to be careful in not coming across like I'm nagging, or overly anxious. Where my brother tends to be the cool, cerebral, rational one in all of this, I'm instead viewed as being emotional, anxious, and like I'm spending far too much of my time fixated on all of the worst-case scenarios. My mom seems so anxious to put a brave face on this, or to return to the life she'd thought they'd be living at this point, that I'm afraid she pushes him to do more than he might be ready for. As they say, it's complicated. Lol.
Cliff, I appreciate your perspective a great deal, too, and am hopeful that you are exactly right in suggesting that this is a kind of self-limiting thing, i.e., that the fact that he's been feeling as well as he has been is a pretty meaningful gauge of what's okay for activity.
Nicole, thanks so much for the encouragement re: his slow recovery. I'm sure you're right about the impact of that heavy chemo - I guess it is just the nature of this disease that at every point along the way it is possible to be imagine that this is how things are likely to remain - for better or for worse!
xo
Robin
Thanks for your thoughts on the latest with my dad. Dave, I always keep in mind your cautions around keeping things clean, avoiding germ-y situations, and overdoing it with activity. I'd give anything to see him have an experience like yours (continued remission with chemo only, even as he approaches 70), and therefore give your advice a lot of weight. The tricky piece of this, as far as our family's dynamic seems to go, is that I have to be careful in not coming across like I'm nagging, or overly anxious. Where my brother tends to be the cool, cerebral, rational one in all of this, I'm instead viewed as being emotional, anxious, and like I'm spending far too much of my time fixated on all of the worst-case scenarios. My mom seems so anxious to put a brave face on this, or to return to the life she'd thought they'd be living at this point, that I'm afraid she pushes him to do more than he might be ready for. As they say, it's complicated. Lol.
Cliff, I appreciate your perspective a great deal, too, and am hopeful that you are exactly right in suggesting that this is a kind of self-limiting thing, i.e., that the fact that he's been feeling as well as he has been is a pretty meaningful gauge of what's okay for activity.
Nicole, thanks so much for the encouragement re: his slow recovery. I'm sure you're right about the impact of that heavy chemo - I guess it is just the nature of this disease that at every point along the way it is possible to imagine that this is how things are likely to remain - for better or for worse!
xo
Robin
Unless your Dad is in "boot camp," he will not do more than what his body tells him to do!
Cliff
I'm sorry to have been away for so long! The stress of these last many months had become a bit overwhelming, and so I have been trying to figure out how to be a little less immersed in AML stuff, if that makes any sense. I have been following everybody's posts throughout the summer, and remain as impressed as ever by the love, support, compassion, and generosity of everyone here.
On the health front, my dad actually seems to be doing okay. While his counts remain low, he is no longer neutropenic and that has made a very positive change in his outlook. While the fatigue is certainly still an issue, he reports that he really isn't "feeling sick" in the way that he had been for some time. He is playing golf when he feels up to it - once or twice a week (9 holes, only), and just this week felt well enough to play bridge with my mom and another couple. The vertigo that had been such a problem those first weeks following the last chemo round has finally cleared up.
One of the strange things that has lingered as a concern since June is that an MRI has shown a spot of some kind on his brain. His doctors were inclined to see this as either meningitis or as leukemia that had made its way to the brain (yikes). Obviously, both of these outcomes would be very worrisome, with the return of the leukemia being the scarier of the two. So lumbar punctures followed, with all results clear. Decision was made to repeat scans, etc. a month or so later - results were the same with this second effort. Doctor offered suggestion that he might do a little intrathecal chemo, just in case. My dad declined this "offer," as he was feeling much better than he'd been feeling, and had no symptoms to suggest brain involvement of AML. Doctor didn't push it, and a month later, the scan shows that the spot (small to begin with) has grown smaller! So, relief all around. What would it even look like for someone to be walking around for months with either untreated meningitis or AML that had its made its way to the brain? Horrible to even think about.
Since his numbers continue to be low, his doctor has revisited the question of doing SCT. Unfortunately, I wasn't able to participate in the discussion where this was raised most recently, so don't know for sure what the sequence of the discussion was, or what the nuances were, but my parents came away thinking that she is proposing SCT again because it looks like his own marrow is just not coming back in the way that we'd hoped it would - and he is still requiring blood/platelets every so often. My parents recalled that the transplant doctor said that it might be a good three months before his marrow truly rebounds, and asked that we give it another month before we return to that discussion (since we are just short of 3 months now in terms of looking at what the marrow might be up to). His doctor is fine with this approach. So, who knows? I am hopeful that the fact that he is no longer neutropenic is itself a reason to think that things might be moving - if very slowly - in a positive direction.
He has been cleared to travel, which is encouraging. My brother and I have proposed that in lieu of our doing a trip (just the four of us) to Germany/Austria together this week or next, that we instead do a whole family trip to Vermont this October. We were just very anxious about his not pushing it, especially when counts remain low, and given that he is still needing blood products from time to time. I was in Europe this summer with my own family, and was reminded how tiring the wear and tear of travel can be even when you are completely well! To our surprise and relief, my parents found the idea of a fall getaway appealing, and so the 11 (includes their 5 grandchildren) of us will make our way to Stowe in October.
This week my parents will celebrate their 47th anniversary, and prepare for a visit from my dad's brother and sister and their spouses - they are coming in from Cincinnati and Philadelphia, respectively. I know that it will be a very special visit for them all, as it will be the first time they've been able to be together since my dad's dx in January.
I have been thinking about you all and continue to wish everybody peace and comfort as you and those you love recover their good health!
Robin
69 year old father dx with AML in January 2013 - in remission since induction / last chemo was first week of June, in prep for SCT that did not proceed due to complications (bowel obstruction, etc.)
Thank you for the update. Things are seemingly going great.
I am (ahem)49 and they have now seen something in my brain as well on MRI. I asked my own radiologist to look at it and he was confident I was fine, just an incidental nothing. His words (a thingy)
MRI (my personal radiology specialty) is so dynamic and shows everything. Frequently we see non specific findings, become suspicious and it ends up being nothing, so if its smaller, hooray !!!!
I hope the visits will boost every spirit and speed additional recovery times. Amazing how having people around makes us feel so much better.
Will be thinking of you all. Peace.
Andrea
Haven't updated in a bit, so here is the latest: Dad remains in remission, and hasn't needed a transfusion of either blood or platelets since August 24. After 3+ months of very dismal numbers (following the aborted attempt at SCT), it looks as though his marrow is finally getting its act together, and moving in the right direction. As many of you will surely be able to relate, my dad was finding himself pretty fixated on the numbers themselves, which was having quite an impact for his sense of well-being - or lack thereof, lol! All of this to say, he is feeling more encouraged now than he'd been for some time.
As far as the day to day goes, his biggest issues have to do with itchiness at the hickman site and with fatigue that just seems to overwhelm at times. When those things aren't a concern, he is doing pretty much what he'd been doing before his diagnosis: hanging out with my mom, occasional golf, dinners out with friends, time with the grandchildren, etc. We notice that if he has a day with lots of activity he will be pretty much wiped out the next. I know that he is frustrated to feel such a lack of stamina, but what are you going to do?
While he'd hoped that his numbers would be stable enough this September that we'd be able to do that trip to Germany and Austria, it was just a little bit too tenuous a situation, and we proposed instead that we do a family trip to Stowe, Vermont. We did that last weekend, and enjoyed the time together very much. We are very fortunate. I know he worries still about relapse, and most especially that if/when that should happen that he'd be faced again with the choice of SCT or perhaps more chemo.
So, I guess that's where things are now. As AML has taught us all the hard way, things might change rather abruptly, but for the moment, we are enjoying the fact that his situation appears to be much more stable than it had been for some time. Last spring, for example, was pretty much one crisis after another - though I know my dad wishes he were feeling strong on a more consistent basis, I can't help but be glad for the relative calm of the last two months. Fingers crossed!
Though I've not been writing as much recently, I check in on a daily basis, and am filled with gratitude each time I do: what an amazingly supportive and loving community this continues to be!
Wishing you all the very best,
Robin
Thanks for the update on your dad, I am so happy to hear his numbers and stamina are improving. Praying for a continuing recovery.
Take Care,
Suzanne
I am sad beyond belief to have to share with you the news that it looks like my father's leukemia has spread to his spine. He will undergo an MRI at some point tonight to confirm. There will be no further treatment. If it does turn out to be the case that our worst fears are confirmed, he will be discharged from the hospital tomorrow, and will return home to start hospice there. My brother and I will bring our families to the Cape to be with him and my mom.
I want to thank everybody in the group for these last many months of love, concern, and support. The stress of dealing with this disease is so unreal. Your kindness has been such an unexpected bright spot in what has otherwise been a very sad year.
Thank you.
Robin
I am so sorry to hear the news, my heart goes out to all of you in such a difficult time. I am glad your father will be surrounded by family and love, praying for peace and comfort during this difficult time.
Love,
Suzanne
I read your post this morning and couldn't bring myself to respond until now. It seems that my words are inadequate. I have followed your dad's journey since March and felt a certain kinship with him and your family. You are all in my thoughts and prayers at this difficult time. Knowing that he is surrounded by those who love him is comforting. As Dave has said, I hope that someone on the Alternative Therapy thread may offer some assistance.
Fondly,
Myra
I too, am saddened to read this news. For your dad to have everyone be there will be a gift. May you all find peace. My prayers and hopes are with you.
Andrea