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Acute myeloid leukemia (AML): What can I expect?
Blood Cancers & Disorders | Last Active: Nov 12, 2023 | Replies (137)Comment receiving replies
Hi, Dell. I really feel badly for you. AML seems to be a really tough thing. I just put it in a couple search buttons, and found a pile of stuff. It seems to be rather closely related to my AL Amyloidosis. About the only truth thing I can say for sure about it is that you will shortly find that you seem to know as much about it as do your doctors. So you must keep learning. Read all the stuff you can find. Books. Videos. Articles. Sign on to the NIH, Clinical Chemicals, Hematology Journal, and anything else you can find from those Google and other search engines. And keep track of your life. In notebooks, computer files, whatever. I wish I could get my local clinic to give me a good horse check every week. BP, A1c, Protein, etc. I could not, so I have done it myself. You can see it at http://bit.ly/1w7j4j8 . And insist your clinic system find you a doc who can help. I eventually called Mayo MN and talked with their alumni office. I asked for any grads who work in my area in hematology or anything else that might work. If they cannot find anyone, call Memorial Sloan Kettering, or University of Utah or whatever. Remember, there is more professional jealousy in medicine than in any field outside of presidential politics. So do not just take someone's word that he or she is an expert in AML. Check it out. And God bless you in your work. oldkarl
Replies to "Hi, Dell. I really feel badly for you. AML seems to be a really tough thing...."
Well, Dell, I always try to help. I am 77 (April), and I actually know very little. But I can read. Some time back I had a good friend who was a very kind and capable doctor. She told me some of her thoughts and guidelines. First, if a person is our age and feeling good, there is nothing to make us think we will not live to 100. If something shows up that we can deal with in the space of a couple months, make that perhaps 95. If it really impacts our lives, and we need about 5 years to deal with it, we might make 90. If it is chronic, and will last, make the lifeline 85. If it is acute, 80. If the doctor wants paid in advance, make certain your will is in order. My guess is that I have about a year.
I have been anemic for about 60 years, and had some form of Amyloidosis for about 40 years. But both are progressing, so I expect about a year or so. Depends on how warm my wife wants to be with me. At my age and situation, no one has offered me any treatments. The stats say that I have more danger of dying from the treatments than from the diseases, so I guess I will just keep going until I see the brown side of the grass.
http://bit.ly/1w7j4j8
Karl, cant imagine what 60 yrs of anemia feels like, you must have some inner strength to have tolerated this condition. Us older folks have less tools with which to fight off most anything, growing old is not for the weak of heart.
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oldkarl, thank you so much for taking the time to reply. It is my husband who has gone from RCMD to ACL. In fact, had bone marrow biopsy this morning to determine status of blasts, hgb went to 7.3, had 2 units of blood yesterday and today, brought it up, first time for blood. He has severe anemia (his main complaint is fatigue) is 76 years old, I might add until the MDS diagnosis last July is a young 76. How long have you had ACL, what treatments are you getting, are they helping, have you had any remission? With all your research, what is the average prognosis for a 76 year old? Medical info is at times so technical we cant understand it but we're trying. Folks like you are becoming my go-to as I try to get a handle on what we're facing and is there hope with this horrible disease.