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 am happy to hear your Dad is in remission. I hope he and your Mom enjoy their time together. How wonderful they have been sweethearts since 15. Who knows what time any of us has left. Someone I love could die before me. Life is like that. What I do know from this whole AML experience is that life is precious and fragile. For all of us. I try to live in the moment as much as I can. I am fortunate to live in a place that is beautiful. I just look around me and enjoy God's grace.
I wish you and yours peace, grace and love.
lily
What prompted this concern was a discussion with the oncologist at Dana Farber on Friday. It concerned her to hear that my Dad has been dealing with intermittent vertigo for the last couple of weeks. That, coupled with the fact that his counts remain very low were of enough concern to her that she called for a brain MRI on Friday afternoon. We heard from her on Friday evening that the radiologist saw "something" that in his view might point either to meningitis or to leukemia that had made its way to the brain. How strange that we found ourselves hoping it was "only meningitis"! Needless to say, the weekend was a very anxious one, as the oncologist advised that if anything should change between Friday and Sunday, they should immediately return to the hospital in Boston. Otherwise, they were directed to arrive first thing Monday morning for bloodwork, platelets (enough to make it safe for spinal tap), and lumbar puncture.
In the meantime, the discussion with the oncologist was very worrisome, as she said that she doubted that he had meningitis, as he had no other symptoms: fever, stiff neck, headache, sensitivity to light, etc. She also described in some detail what would be involved with treatment should the leukemia have spread to the brain: intrathecal chemo, and SCT back on the table! Apparently, AML is quite aggressive once it presents in the brain. The "good", if confusing news in the midst of all this was that bloodwork showed no blasts, and the aspirate results from Friday's BMB showed no leukemia, either.
The upshot of all of this is that he remains in remission (since February), blood counts remain very low in wake of last chemo round, he is feeling stronger with each day - back to cooking, taking short walks, etc.
Phew.
Best wishes to all for your comfort and peace,
Robin
I was so sorry to read that you and your family had to experience such anxiety-filled days. You have been through so much and the thought of either of those two additional diagnoses must have been extremely frightening. Thank God that all is well, that your father is still in remission and starting to be able to enjoy the little things in life. All the best to you.
Myra
I hope your Dad's vertigo passes and his bloods improve quickly so he can get onto his holiday plans!
Nicole
Here is an "out of the box" suggestion: Several years ago, I, too, had bouts of vertigo, had an MRI and was told to see a neurologist. He said that I had Chiari malformation of the brain but that is was insignificant and not the cause of the vertigo. He then told me that he believed that I had a condition in my inner ear called benign positional vertigo and gave me a series of head exercises which induced the vertigo, caused considerable nausea, etc. but eventually cured it. Just a thought . . .
Myra
Myra, when my Dad had his more serious episode with the vertigo about ten days ago, the doctor at the little hospital on Cape Cod talked about the possibility that something might be going on with the inner ear. I am sorry to learn that you've dealt with vertigo yourself, but interested to know that you were able to address it. I will go do a little googling of what you described to see if I can learn any more about it!
Thanks -
Robin
You are all so courageous and amazing. Sometimes I wonder how we manage to work through it all. I feel like we are all like a bison in a snow storm. Just brace ourselves and deal with what ever comes. And somehow get through it.
Thinking of you and praying for blessings and peace.
lily
We enjoyed a great visit with my parents over the July 4th weekend - of course he does have to take it easy and rest when he feels he needs to, but on the whole our time together as a family was not much different than pre-AML.
Myra, I want to thank you for the suggestion that we look into some exercises for dealing with the vertigo - much to his amazement, it looks like they are working! He found himself feeling better even after just doing one "session"! He is going to continue with the exercises and is so, so glad to have found some relief from this. Thank you so much for the suggestion!
Robin
I am so pleased that the exercises are working for your dad. I suffered for several months with vertigo and it was extremely unpleasant. After an MRI of the brain, CT scans, etc., I couldn't believe that a simple exercise would be of any help. However, I did the exercises and after one week, the vertigo disappeared and never returned. That was 11 years ago. I hope that something as simple as this will provide your dad with some measure of relief.
All the best to you and your family.
Myra
Robin
My counts take forever to come back. Even with lower dose chemo, upwards of five weeks. It has been the hardest thing for me because I feel like I can't do anything and live in fear of infection from exposure to someone/ something.
Hang in there. My docs always ( even now after one year) tell me to stop looking at my counts, but I am addicted.
Andrea
He did have a second brain scan last evening. The one several weeks ago had shown a spot of some sort, and the doctors want to be sure it is not evidence of leukemia there. The lumbar puncture of a couple of weeks ago was clear, and blood work remains blast-free. Additionally, the two genetic markers present at dx are no longer there.
Last evening's (more powerful) scan shows no change. They will take another look in a month or two.
Hope everyone is doing okay, patients and caregivers alike!
xo
Robin
Good to hear your Dad is at least feeling better, I'm sure the blood counts are on their way also. After my relapse I had high dose Ara-C chemo which I sailed through, but it still took 6 weeks for my counts to recover and when they did start to show they were slow to increase which is the opposite of my first induction where my counts returned in 2 weeks and rose quickly. After the relapse induction my counts returned to good levels in the 6 weeks leading up to transplant. The conditioning chemo I assume is stronger than normal chemo so as long as your Dad can avoid any infections I'm sure the counts will come back when it's time. His body will be working hard still to recover even if he doesn't feel it so rest and good nutrition is still important.
Nicole