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.
Hi, all -
Our family is meeting with the oncologist tomorrow and we are unsure as to what we should be asking her about next steps, transplant, etc. My Dad is 67, in good shape otherwise, i.e, no issues with heart, blood pressure, or problems like diabetes, etc. and is now 3 weeks out from completion of consolidation.
We don't know what we don't know, of course, and would be grateful if others of you with some experience of this process would be willing to share with us some suggestions for what we should be asking of the doctors at this point in the game.
We did have one brief session (some weeks ago) with the doctor that would handle the transplant, and gathered from his remarks that while transplant brings with it an array of serious risks, that to elect NOT to do it (in my dad's case!) offers a pretty poor prognosis. My brother, mother, and I left the meeting thinking that there really wasn't much to be made in the way of a decision here, as the one approach offered at least the hope of recovery while the other was almost certainly to result in a relapse (perhaps sooner, rather than later).
When my Dad is feeling unwell or discouraged, he seems drawn to the idea of forgoing a transplant, and focusing instead on enjoying what time remains. When he is feeling stronger, and well - he is more receptive to the idea of the transplant, and eager to understand the details around what follows, risks, etc.
So, if you are willing to share, what kinds of things did you ask about? Are there aspects of the transplant process that you wish you'd understood better before you made the choice to go that route? If you were ambivalent about doing it, was there an insight or an experience that helped you to feel more certain about your choice, one way or the other?
Grateful,
Robin
Our family is meeting with the oncologist tomorrow and we are unsure as to what we should be asking her about next steps, transplant, etc. My Dad is 67, in good shape otherwise, i.e, no issues with heart, blood pressure, or problems like diabetes, etc. and is now 3 weeks out from completion of consolidation.
We don't know what we don't know, of course, and would be grateful if others of you with some experience of this process would be willing to share with us some suggestions for what we should be asking of the doctors at this point in the game.
We did have one brief session (some weeks ago) with the doctor that would handle the transplant, and gathered from his remarks that while transplant brings with it an array of serious risks, that to elect NOT to do it (in my dad's case!) offers a pretty poor prognosis. My brother, mother, and I left the meeting thinking that there really wasn't much to be made in the way of a decision here, as the one approach offered at least the hope of recovery while the other was almost certainly to result in a relapse (perhaps sooner, rather than later).
When my Dad is feeling unwell or discouraged, he seems drawn to the idea of forgoing a transplant, and focusing instead on enjoying what time remains. When he is feeling stronger, and well - he is more receptive to the idea of the transplant, and eager to understand the details around what follows, risks, etc.
So, if you are willing to share, what kinds of things did you ask about? Are there aspects of the transplant process that you wish you'd understood better before you made the choice to go that route? If you were ambivalent about doing it, was there an insight or an experience that helped you to feel more certain about your choice, one way or the other?
Grateful,
Robin
I am 48 and transplant was my only option. I accepted that and moved forward. There is no easy path, but I have two amazing children and a marvelous husband. I have not accepted that my story would not continue for many years to come. My goal today is not different than it was last June when I was diagnosed and that was to fight like heck and prove that I was stronger than what was ahead of me. Every life experience had prepared me for the battle ahead.
I do remember freaking out a bit when I read the paperwork for transplant, but being post, I have zero regrets. I am tired, I had some GvHD issues initially, but they were managed and are now a memory. My family supported me 100% and my husband just believed that we were giving up some time for significantly more time with each other. I am finally making vacation plans and it feels good.
So, you need to really listen to the docs. Is transplant the cure? If so, your dad should absorb all of the information and then make a personal decision. I do not regret transplant at all, but again, it was my only option for cure.
Peace, love and hope,
Andrea
Thanks SO much for sharing your perspective. It is so reassuring to hear that you are doing so well. Your resolve and determination are so impressive (and have to be serving you well as you make your way through this!) I looking forward to reading more about your progress - especially as you approach your 100th day! I also appreciate that you posed the question about the significance of that number - I'd been wondering the same thing!
Thanks,
Robin
I would say that the big question is: will the transplant increase his prognosis for long term remission, and by how much. Just because it worked for me does not mean it will work for anyone else -- we are all quite different. I do feel like I had a fallback position -- could still have gotten a transplant if things went bad. I am not sure now being nearly 70.
Hopefully others will chime in here -- this is a very important decision and it would not hurt to get a second opinion on it.
Good luck with it -- dave
I think that Dave has a special hot-line with the Lord, and so his opinions are probably biased (just kidding DAVE). From my understanding from getting to know Dave, he took an open-minded approach to his therapeutic decision and, having been told that transplant would not significantly improve his prognosis over chemo alone, he chose the latter.
I had an easier decision to make. Actually, I didn't make a decision. I was given one. My doctor told me that I was in a moderate risk of relapse group and that BMT would definitely improve my chances of cure (I just love that word). I did not question his recommendation, and so, using the metaphor I always choose, I put my blinders on and followed orders. Perhaps I should have asked more questions, because I was somewhat frightened when I developed severe complications with my first induction, but knowing more would not have helped me. I just would have been in an agitated state the whole time, I really never asked statistics, but rather asked my doctor for a gestalt opinion about what would be best for me. In fact, I didn't want to hear that my chances were X% of this happening or Y% of that happening,
I think the only questions that I would have asked a bit more about in hindsight are in relation to the conditioning regimen for transplant. They recommended total body irradiation (TBI) which Andrea also received, and so I went for it. It wasn't a great experience, but it was tolerable. I didn't know, however, that there are some delayed consequences of the treatment with relation to bones, kidney function, chances of second malignancies (generally skin cancer) etc. Nevertheless, they felt that TBI would be my best alternative in order to beat AML, and so I did it. I just would have wanted to know more.
I think you should ask questions about nutrition during the induction, consolidation and conditioning, I had absolutely no problem until after the radiation, when my throat soreness was bad and I required hyperalimentation. They did tell me beforehand that almost EVERYONE needs to get some nutrition by vein for a while.
I would also ask if they do T-cell depleted transplants at Dana Farber, which is the kind that I received, Its advantages are no GVDH, no steroids, no immunosuppressants (like tacrolimus). Its potential disadvantage is the thought that some graft vs. leukemia effect is good, and that T-cell depleted transplants deprive the receiver somewhat of this secondary insurance against having residual abnormal blasts in the bone marrow.
As Andrea (the wise) noted, we all "freak out" when we have to sign the consent forms. I was given something that said that 10% of patients die from the therapy alone. Knowing that statistic, like most others in my opinion, was not helpful. I chose not to think about such nonsense. I was going to be treated and that was that.
Like Andrea, who has been an A #1 trouper, I too have no regrets. Even the little bit of additional information that I might have obtained pre-transplant would not have changed my willingness to follow their regimen. I just kept thinking...if my doctor says so, then IT MUST BE SO. Doctors are not Gods, but it is absolutely essential that you trust your physicians to guide you out of this temporary quicksand. I always hope that from my own patients. I never voice an opinion on something I know little about, and if I do, I always qualify it by letting them know that I am not a Jack of All Trades when it comes to the complexities of medical knowledge. But when I know something for certain, I say so. This is what I expect from my own physicians, and so I put myself in my doctors' caring hands, knowing that he or she has used JUDGMENT..
One question you might ask, if you are too anxious to think in the doctor's presence is "What questions do you think I should be asking you?" I am sure that he or she will have fielded almost every question before and will know what information will be of value. Just ask the doctor to describe the therapeutic branch points -- where the path of the potential therapies diverge. Then you will feel prepared to take some control of the process.
Remember one thing....and I say this all the time. Your love and support of your Dad is worth all the tea in China, or all the chemo at the hospital. Your love is clearly real, and so is your Dads prospect of getting through all of this and regaining his health. Just look around this website. These tough guys are facing the treatments head on. That is all that can be expected from your Dad. Don't act anxious in his presence. My wife and kids and my wonderful sister were always positive. So if the doctor says anything that could be anxiety provoking, don't react that way in front of your Dad. A hug and a squeeze is much more comforting than overtly sharing his own trepidation.
One last thing, there is a description in French that essentially relegates patients or family that come with lists of written down questions to ask the doctor. It is called "maladie du petit papier," the illness of the little paper. It implies that when a patient comes with a list, that patient is neurotic. In my experience as a doctor and as a patient, I can tell you that the anxiety of discussing scary things with your or your loved one's doctors can make you forget all that you want to ask. So I believe in "le petit paper," and don't think there is anything wrong with writing questions down before the visit with the doctor. It helps.
You are great, Robin.
Cliff
It is unbelievably helpful to have your comments here - I have shared the thread with my family we will discuss it together this afternoon.
Dave, your own experience is absolutely relevant, and helps us to clarify our own thinking around weighing benefits and risks. I am curious to know whether the fact that you had MDS along with (or prior to) is a factor in considering the efficacy of one course of treatment vs. another. It is so encouraging to read that you are doing as well as you are, and I have been fascinated to read your account of your experience via your blog.
Cliff, I can't thank you enough for the detail of your response. My parents are coming into Boston for bloodwork and the meeting at Dana Farber even as I write this, and my mom tells me that dad plans to read these posts aloud to her as they make the drive in from the Cape. I am sure they will enter the discussion, per your advice, with something like a little paper! Thankfully, they have a wonderful relationship with the oncologist who is in charge of his care, and have tremendous confidence in her approach to his treatment. Thank you so much for taking the time to give such a thoughtful and detailed response.
Billy - given all that you are going through to support Tina in her ordeal, it is beyond generous of you to have given even a moment of your time to respond to my question. I am deeply grateful for your willingness to share your experience here - especially because Tina is still very much working to achieve her own recovery.
This forum has just been an extraordinary resource - thank you again for the very helpful responses. I will be reading through these again and again, I'm sure - as will the many others who are going through some version of this same struggle, and coming here to better understand both what is happening and what is ahead. I was poring through your posts for weeks before I wrote one of my own - I am certain that there are many others here who are doing the same even now.
Thank you, all - I will share the results of the discussion later in the day. Sadly, I won't be able to participate, after all, as I have been fighting a chest cold all week and two of my kids have been sent home with fevers. Just too risky to be with dad now :(. My brother will do a great job of taking it all in, though, so I will hear a report from him by day's end, I'm sure.
Best to all,
Robin
I do not negate any of the skills of the medical people -- I believe their skills are given by God as he made us all wondrously (to quote David); but I will not minimize the fact that hundreds of people were praying for me, and for that I thank them and I thank God for putting such love into their hearts. -- dave
Wanted to give an update as to how yesterday's meeting with the oncologist went. Bloodwork was good - in the doctor's very clinical terms, Dad is showing "happy numbers" at this point. She saw no need for him to go ahead with a previously scheduled transfusion, and thought it likely that he wouldn't need one next week, either. This news was very welcome, as just a few weeks ago, we'd been made aware that the regimen for the several weeks between consolidation and transplant would likely include at least a couple of transfusions per week.
The conversation around the question of transplant was short and sweet: we have been told in pretty plain terms that my Dad's path to long-term survival WILL include a transplant. While it is a little unsettling to have the reminder as to how serious and aggressive a disease this is, in a strange way, it is a relief to not feel the anxiety of "should he or shouldn't he?" - and focus everything we have on the success of this therapy. The transplant team has found three prospective donors, and is moving ahead to better gauge which will be willing, able, and most appropriate for my Dad. Coincidentally enough, when I arrived home from work yesterday, a cheek swab kit had come in the mail for me (I'd registered as a bone marrow donor a couple of days ago) - I am eager to "pay it forward," and will complete the kit this weekend and return it to the National Registry asap!
An MRI several weeks back did show a spot of some sort on Dad's kidney, which they believe to be a benign kidney tumor. He needs a biopsy to confirm and clear this up as an issue - and will have this done at Brigham and Women's next week. Another bone marrow biopsy will be completed then, as well.
For reasons that I don't fully understand, my Dad's stay at the hospital for the transplant won't be the month that some people experience, but as little as 7-10 days. Does this have to do with the intensity of the pre-transplant conditioning stuff? I have no idea. We've been told that we are probably 4-6 weeks out from transplant at this point.
Best wishes to all!
Robin
I was waiting for your update. It sounds good to me. And already 3 donors?? Great. it turned out that my best 10/10 match was from a young man in Germany.
Every institution does things differently, so it is impossible to gauge what Dana/Farber's thinking is. All I know is that this is a truly first-class oncology hospital and I would trust what they say.
Like me, you prefer a menu with one entree. I was also relieved when I was absolved of having to make a decision about my treatment (transplant). In many ways, Dave too, having been presented the prospect of transplant as not having that much additional to offer over chemotherapy, helped him make his decision.
Just follow the charted course and keep asking questions. You deserve to understand, Just make it clear, in writing if necessary, that your father gives you permission to be an intermediary in information transfer.
With regard to the lesion on the kidney, if it looks benign, it is most likely an angiomyolipoma, a relatively benign kidney lesion with no potential to transform into a cancer. I am sorry that he has to have a biopsy. They really aren't so bad and are guided by CT or ultrasound. I think I too have a really tiny one on my right kidney.
I am thrilled that your Dad does not need a transfusion right now. The less blood transfused, the better, because of the iron build up after a while.
Keep us informed. Tell your Dad "Congratulations!" I guess he will be "reborn" by May!
Cliff
I also avoided statistics, and once I trusted my Doctor, it was a matter of following orders.
I was often complimente for having a good attitude during my hospital time. However it was really a pragmatic attitude and was focused on getting from one moment to the next.
Best wishes
Jon
Jon, I really appreciate your adding your experience here. My Dad is continuing to angst over the SCT. Where in the first several weeks he was in such a daze that he didn't have the energy or the spirit to do too much in the way of research, he is reading up a storm now, and as I am sure all of us on the forum can appreciate, the instant availability of so much information can be a double edged thing. In particular, we haven't run across too much info around the use of transplants in people as old as he is (67). Glad to know that you continue to do well, Jon.
Thanks, all!
Robin
Jon, I really appreciate your adding your experience here. My Dad is continuing to angst over the SCT. Where in the first several weeks he was in such a daze that he didn't have the energy or the spirit to do too much in the way of research, he is reading up a storm now, and as I am sure all of us on the forum can appreciate, the instant availability of so much information can be a double edged thing. In particular, we haven't run across too much info around the use of transplants in people as old as he is (67). Glad to know that you continue to do well, Jon.
Thanks, all!
Robin
Hope things are going better. Please give us an update. Please believe me when I say that I pray for both of you every morning. I am waiting to hear about a major breakthrough change. It will happen soon. I just know it.
Jonathan,
Tremendous wisdom in your words. That is absolutely the right attitude and it always serves us well.
Cliff