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
I love what you said, "Just believe". I got a great report on my BMB. But I still catch myself thinking of that 30% chance of relapse. I stop it in its tracks and think of the 70%. I am going to tell myself from now on to just believe it is going to be ok. I am going to believe in a cure.
Good to hear you are doing well.
lily
Fighting AML is tough both emotionally and physically! My emotions have been all over the place. I do my best to keep walking forward everyday. I have been so blessed with the love and support around me, and humbled with the caring I have been shown. I am glad your father has the opportunity for a transplant and cure, it is not easy but he will do well. Just like Dori says "just keep swimming......" Keeping your dad, mom, you and your family in my prayers.
Take Care,
Suzanne
I want you to know that I am thinking of you, your dad and your entire family as he begins his transplant journey today. My prayers are with you. If you can, please keep us updated as to his progress.
Myra
lily
Dad is feeling upbeat and pretty strong, all things considered. I'd been feeling overwhelmed and weepy throughout the day yesterday, but was able to relax a bit a bit after I heard him sounding as good as he did. He feels like he is in great hands with the staff at B & W, and in particular, enjoys the support of his very caring and attentive nurses.
We are hoping that Dad will do as well with this stint of chemo as he did with induction and consolidation, and that the week will not be too "eventful" on the medical end of things. I will certainly update as all of this unfolds.
Thank you, friends.
Robin
Shane
Take Care,
Suzanne
Hoping your Dad has a 'boring' weekend and is feeling ok. I found transplant conditioning a breeze it is when the counts drop after transplant that the mouth ulcers and risk of infection that are the issue. Enjoy this time when he is feeling OK, knowing he is well looked after.
Nicole
I am sorry to say that my Dad has suffered through a terrible ordeal over the course of the last several days - full bowel obstruction, nasal/gastric tube, etc. - all in the midst of his conditioning chemo in prep for his SCT (scheduled for today) - he has made the choice to forgo the SCT after all. Our hearts are broken, but in a strange way there is peace and a sense of relief, too - my Dad has suffered so much - the thought that he might deal with even more should he experience gvhd and various other effects of SCT is just too much. He would have proceeded with SCT had the stuff with his gut not reared up again in such an extreme way, that is not the hand with which he has been dealt. I've copied my mom's update from caringbridge this morning, as it captures pretty well how things have unfolded in the last day or so.
Robin
Day One Hundred Forty Two
There will be no Day Zero, at least in the near future.
Dave had a rough night. His distended belly was sore to touch. He railed against the NG tube, threatening to take it out himself. He slept very little as he had to stay upright with the tube in place.
Besides his physical distress, he was very upset, thinking he had made a huge mistake agreeing to the transplant. He reasoned that since his gut reacted so drastically to just the beginning of the process, that it would continue to do so. He felt trapped, that if he took the cells, there was no going back, but to go forward seemed like a death sentence, a painful one. He further fretted that backing out now would mean letting me, Robin and Justin down.
Dr. Ho called last night to say he had been in touch with a surgeon who would meet with Dave in the morning, that they would put the transplant on hold for now and freeze the cells, and Dr. Ho would stop in after his morning rounds to talk about next steps.
I got to the hospital early, not chancing missing the doctors' visits. I texted the kids about developments and they both made arrangements to get here in time to hear what Dave was thinking, and then what the docs had to say.
Dave explained that he feels sure that the complication of his intestines would insure that he suffered from GvHD, that the problem he has now just from the low dose chemo would be exacerbated when the two systems were fighting it out, necessitating emergency surgery from which Dave was unlikely to get through. He does not want to die alone on an operating room table. He wants to stop the transplant process.
The kids were wonderful, saying that they understood, that the decision was his to make and that they would love and support him, whichever path he chose. We all three felt that he was at a low point physically and mentally, that perhaps today was not the day to make such a serious decision and that we needed to hear the doctors' opinion, but if that was his final decision, we agreed.
The surgeon consulting the transplant team was direct and pulled no punches. The edema was of concern, Dave was not a good candidate for surgery under any circumstances and the transplant should be put on hold until the blockage and edema resolved. We expected the transplant team doctor to urge that it go forward, but that was not the case. Dr. Ho concurred with the surgeon. Dave's bout with edema was a new development. "Sometimes things happen for a reason," he said. It is as if this new development was a warning.
We can remove our gloves and masks. The orders for immunity suppressants are cancelled. Dave will get daily shots of neupogen to boost his marrow growth to get it back to last week's count levels and they stopped the two Imus brothers immune suppressant drugs. They will check his blood counts at least once a week until he is back at last week's levels. Unfortunately the chemo already in his system will continue to attack his immune system for ten days or so. He will be tested for continued remission frequently thereafter. The cells arrive late tomorrow night and will be frozen, perhaps to be used sometime in the future, by Dave or someone else. He still has the option.
With the help of some ativan, Dave is getting some sleep. He just opened one eye and asked me if I had a jar of soy sauce anywhere. He must be cooking something up in his dream. If the fluids in the NG tube clear up and his gut pain abates, they will take the tube out tomorrow. They will keep him around for at least another 24 hours to be sure all systems are in working order. Then we go home.
I am disappointed, on one hand, and relieved on the other. So much effort and planning got us to this point, and it is painful to think that Dave need not have endured the discomfort and loss of ground this week. But had he not tried, we would have always wondered, "What if?" At least now we know.
Will be thinking of you all in the coming days. Glad that he is getting some sleep even if its drug induced sleep. The body needs rest.
--Tina
Andrea
Praying for your dad, you and your family. Your dad and family have faced some extremely difficult and almost impossible decisions. When things go as planned great, but dealing with complications and the best way to treat those complications is exhausting. Your mom writes beautifully and being together for the difficult decisions is so important. So sorry you all are going through this, my heart and prayers go out to you.
Take Care,
Suzanne
I was so disappointed when I read your post and your mother's caringbridge explanation. I recall that in earlier posts, your dad's intestional issues were always a main concern for both him and your family. It seems that no one, including the doctors, anticipated that it would become an issue. I truly believe that things happen for a reason and that sometimes we don't truly understand why. I feel that you mother is so right when she said that there will be no "what ifs" since the attempt was made. I wish you and your family peace and send my prayers and support your way.
Myra
Much love to you and yours.
Lily
Nicole