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.
Hello,
Just have a concern about what my doctors have been telling me in terms of my recovery post-transplant. I am currently at Day +53 and feeling really well. I exercise everyday and am eating as well as I can on a neutropenic diet. I'm working on putting on weight and muscle to make up for what I lost through treatment and have had gradual success. All my numbers have been w/in normal range for weeks, and I have not needed any transfusions or hydration therapy. Every time I meet w/ my doctor or PA they seem very impressed w/ my progress and comment on how well I'm doing.
So here's the issue: I still stay in touch w/ the doctor (from a different hospital, out of state) who diagnosed me back in November. We correspond about once a month and I tell him how I'm doing. So, of course, this time I told him how well I was feeling and how happy my doctors are w/ my progress. He responds by telling me that he received some notes from my current doctor recently about me that said "I was doing well, but always lag a good bit behind 'real time'." What does this mean?? I am very put off by this statement, and at the same time a bit wary of my doctor. Wouldn't they tell me if I wasn't doing as well as I should be? I just don't understand this statement and it's really bothering me. I'm wondering if I should bring this up to my doctor at my next appointment, or if it would be inappropriate to tell them that my other doctor gave me that information? Does anyone know what "lagging behind in real time" means?
Sorry if I seem overly worried about this. But, I don't like hearing that I'm doing so well from my doctors, and then read that they're telling another doctor that I'm behind. Strange. Any feedback or medical jargon decoding appreciated!
Just have a concern about what my doctors have been telling me in terms of my recovery post-transplant. I am currently at Day +53 and feeling really well. I exercise everyday and am eating as well as I can on a neutropenic diet. I'm working on putting on weight and muscle to make up for what I lost through treatment and have had gradual success. All my numbers have been w/in normal range for weeks, and I have not needed any transfusions or hydration therapy. Every time I meet w/ my doctor or PA they seem very impressed w/ my progress and comment on how well I'm doing.
So here's the issue: I still stay in touch w/ the doctor (from a different hospital, out of state) who diagnosed me back in November. We correspond about once a month and I tell him how I'm doing. So, of course, this time I told him how well I was feeling and how happy my doctors are w/ my progress. He responds by telling me that he received some notes from my current doctor recently about me that said "I was doing well, but always lag a good bit behind 'real time'." What does this mean?? I am very put off by this statement, and at the same time a bit wary of my doctor. Wouldn't they tell me if I wasn't doing as well as I should be? I just don't understand this statement and it's really bothering me. I'm wondering if I should bring this up to my doctor at my next appointment, or if it would be inappropriate to tell them that my other doctor gave me that information? Does anyone know what "lagging behind in real time" means?
Sorry if I seem overly worried about this. But, I don't like hearing that I'm doing so well from my doctors, and then read that they're telling another doctor that I'm behind. Strange. Any feedback or medical jargon decoding appreciated!
Good luck, warrior!
Robin
I do not think you are over reacting to this comment. I am the same way. I tend to ruminate on my med teams comments and have followed up with my triage nurse or coordinator to get clarification. Every Wednesday my med team hold a meeting called the tumor board. Btw, I find this name comical because they focus on leukemia. During this meeting, questions from patience, like your, are addressed and communicated back to the patient.
I hope you are able to get your concerns resolved. I wholehearted ly agree with Robin, you deserve that. Praying for your continued recovery
Julie
Take care -- dave
I understand your previous doctor wanting to be left in the loop, but since he is not treating you, he shouldn't pass on information that, however innocent, might cause you to lose some confidence in your doctor. Confidence in your medical team is very important. Maybe this is something that clears up on its own so he didn't mention it to you so as not to cause you anxiety.
My original doc in Lansing made it clear that when i went for transplant I would no longer be under her care and Dr. Voravit from Karmanos would be my new doctor. I know they do send her my records still, but i have no visits or contact with her anymore. I suprised that you still have appointments with your old doctor post transplant. Having complete confidence in your team is important. If you need to ask them about this to do that, than i would ask. If not, let it go.
Glad things are going well for you, you will have a bright future.
Dave J.
PS. no, i dont know what lagging behind real time means either, 1st thing i thought of is being late to your appointments or something? LOL
I don't have much to add, only that I agree with what others have said. When you speak to your current physician, just tell him what you told us. I haven't the foggiest what the now famous quote of your prior doctor means, but I would bet it means nothing significant. You are doing well. That is what is most important.
Cliff