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
Congratulations on a date! I also like Ed relapsed and had to go in for another induction. The induction put me back into remission and then straight to transplant. I was very fortunate because I was already HLA typed the year before, my only brother was not a match. They found a 10/10 matched donor pretty quickly and I did not need another consolidation round. I did have pre-transplant conditioning chemo then the transplant. The only reason for more consolidation rounds is if there is too much time between induction and availability of a donor. Your dad is going to do great!
Take Care,
Suzanne
Robin
Robin
So, much is up in the air once more. We will meet with the relevant doctors this week. Our hope is to get the partial nephrectomy done asap - and then proceed with whatever is next for the AML. Our doctor is still firm that SCT should be the next step, and says that the kidney stuff doesn't change her outlook on that stuff at all.
Dad is back to worrying about whether to proceed. I think that even if the kidney thing is just the manageable "bump in the road" that they've suggested it to be, a little of the fatalism has crept back in. He seems to be wondering if it makes sense to proceed with SCT -- his recent "luck" being what it is, he thinks that he'll have a year of struggling with GvHD, thousands and thousands of dollars blown on immunosuppressants and such, and will likely end up relapsing again , anyway.
What's that line about April being the cruelest month?
Robin
I truly thought the kidney thing would be nothing,. In fact, the AML diagnosis may have saved your Dad's life, because the cancer can be removed and would not have been picked up had he not had tests in preparation for his AML treatment.
He should not go into a pessimistic mind frame. There is absolutely no reason why the renal issue would change his prognosis with the AML. He needs to read our posts and see how well those of us who are transplant survivors are doing. This is a time for positive energy, not negative.
Robin, I was diagnosed with AML on March 28m, 2011. April was the beginning of my road to recovery. Now over 18 months later, I am well. I don't know what the future holds, but I can tell you that this April will be a "damn" good month for me. I will make sure that it is.
Please give your Dad my best and tell him that this old geezer (me) got through it all.
Cliff
I replied to your "checking in" post before I got a chance to read this post. Stay positive!! I know it's easy for me to say, but I truly believe everything will be ok. You said: "Our doctor is still firm that SCT should be the next step, and says that the kidney stuff doesn't change her outlook on that stuff at all." That is great news! Look at the positives and take it one day at a time. Best to you and dad. xoxo
I have a special fondness for your dad since he shares a name, age and birth month with my husband. In my daily prayers, I have included everyone on this site - both patients and caregivers. I will offer a special prayer for you dad.
Fondly,
Myra
We had a productive meeting with the renal oncologist and surgeon at Dana Farber this afternoon. Bloodwork was as follows:
WBC 4.6
RBC 3.82
Hemoglobin 11.9
Hematocrit 35.9
Neurophils 59
Platelets 161
Blasts 0
While I am not at all sure as to what to make of these numbers, the fact that he hasn't had to have a transfusion in a number of weeks and that he has 0 blasts are good things, for sure. The renal oncologist was very encouraging and described my dad's renal carcinoma as low grade, small, and "highly curable." Both he and the surgeon explained that while the goal was to do just a partial nephrectomy, there was always the chance that once in there they might have to remove the whole thing. They are not concerned about metastasis, and have pronounced his current kidney function as excellent. He emphasized that the AML is the much more serious of his issues. The surgeon explained details of what the recovery would entail, and said that that'd like to see him be 6-8 weeks out from the renal surgery before they do the SCT. On the whole I'd say that we found the discussion less foreboding than we thought it might be. The most worrisome aspect of where things stand now, I guess, is that the recovery from the renal stuff is going to delay the transplant (if he finally goes that way!) by so much that the chance of relapse between now and then seems a concern. Thanks again, to all of you that replied to my post - I will definitely follow-up as we move forward. Still not sure where we are headed with respect to the SCT, but hope that next steps will become more clear in the coming days and weeks.
Robin
As a little boy, my father underwent surgery to correct a malrotation of the bowel. While that issue was corrected, it led to another problem that he has dealt with ever since. The abdominal surgery way back when has led to a lifelong concern, which is that he tends to form lysis of adhesions. I think there have been at least three open abdominal surgeries since then, each time to clear his gut of the adhesions/scar tissue. As you'd guess, while in each instance the surgery was necessary to deal with the issue at hand, it had the longer term effect of just making the problem worse. Ironically enough, the only reason that his AML was discovered when it was was because he'd been admitted to the hospital with a partial bowel obstruction, and routine bloodwork was done in anticipation of surgery. So, while he doesn't have the typical "co-morbidities" that might come to mind: diabetes, hypertension, etc., he does indeed have what has been described as a "hostile abdomen." Diarrhea has been an intermittent problem for years, and he deals with bowel obstructions (usually partial, but still!) on a frequent basis.
Very honestly, the more I read about the possible gastrointestinal complications of SCT, the more worried I become. While I certainly haven't expressed this to him, at this point I am probably more frightened by the prospect that he will elect to do the SCT than if he were to decide that chemo alone was going to be it. We will meet with his primary oncologist this week, which I hope will allow for a discussion of the following questions, among others:
--is someone with a so-called "hostile abdomen" likely to be more vulnerable to GvHd of the gut, or only just as likely to experience this problem?
--does the fact that he has the gut history that he does mean that he will be more vulnerable to infection (of the non GvHD sort)?
--is the fact that he isn't t going to be given the full chemo-radiation regimen going to make it less likely that he would experience oropharyngeal mucositis?
--how long does the doctor think he might expect to live if he were to forgo the transplant?
--how long might he expect to live if he were to proceed with the transplant?
I've been doing a whole lot of googling (I know, I know, big mistake!) in the hopes of learning whether other older patients (with pre-existing bowel issues) have had success with SCT. Nothing has turned up just yet to shed light one way or the other.
Anyway, I will update as this unfolds - and as always, I would surely welcome the perspective of anyone who has "been there and done that," especially with GvHD of the gut!
Robin
Robin
Be well!
Sometimes it helps to just take a deep breath, and think about nothing at all. Relax your body as much as you can. If only for a few moments.
Blessings to you and your Dad.
lily
The fact that your father has had many episodes of bowel obstruction due to adhesions has no bearing on whether he will develop the mucosal inflammation that comes with chemotherapy and radiation. As far as mouth sores, if your Dad is going to get radiation, they will probably pretreat with Palifermin. It gives the mouth a very weird feeling, but it protects the mouth from sores (I got NONE). Sadly, however, it doesn't protect the throat and that was bad. I know that if your Dad develops a bowel obstruction during treatment, that will be a bad thing, but why anticipate that happening?
I would imagine that the partial nephrectomy will delay things a bit, but from the time of my second induction to the transplant, I did not relapse and why should he? Just follow your doctor's recommendations. When I was a fellow and rotated through Dana Farber, I found it to be an amazing place with amazing doctors. I can tell you that that hasn't changed. Just as a lot of questions and they will answer them.
Your Dad's counts look absolutely wonderful and those are counts of someone in remission. So far so good...one foot in front of the other. He'll get there.
Please give him my best.
Cliff
I guess I'm updating my update here! My Dad had surgery to remove his renal carcinoma today. Went well, if a bit more difficult than was anticipated, due to heavy adhesions and scar tissue -- more blood lost than ideal, but they gave him two pints (out of three that were lost) and are going to follow him closely through the night. The good news is that they were able to save 80 - 85% of the kidney. Also, the mass was excised and the margins have been declared "clean." He will need to recover for 6-8 weeks before he can undergo the SCT. Onward and upward...
Robin
That is great news!!!!! So we finally have found something good about AML. It gets you to have a CT scan that finds other things before they cause problems. Thank God we found this now! Just another thing to add years of health to your Dad. Also, the fact that they were able to save so much of his kidney will help him in the future. All in all...GREAT!!!
Cliff