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 guys,
As I have said, ad nauseum, I don't read about my AML or the statistics relating to my survival post-transplant. That statement is not made flippantly. What I have always meant by that is that I do not read about or fret about things that I cannot influence. That being said, I DO read about the long-term sequelae of BMT and what I can do to forestall these late issues.
1. Osteoporosis: There is no question that there can be significant bone loss following transplantation. My DEXA scan about a year after transplant revealed osteoporosis. I have been treated with denosumab (an antibody that blocks the RANKL receptor on the cells in the bone that break down the bone structure). It is administered 2 x a YEAR and after 1 year, I was in the osteopenic range and no longer osteoporotic. I would recommend that all of you who have had transplants get a DEXA scan (if you have not already) and begin treatment for osteoporosis if you have it. Be sure to check your Vitamin D levels. Many Americans are deficient and low Vit D reduces the absorption of calcium by the gut. You should also probably be taking a calcium supplement anyway (like Citrical) and doing some weight-bearing exercises.
2. Kidney problems: Those of you who have had TBI (total body irradiation) are at risk for some kidney issues. I lost some of my kidney function, but it has stabilized and it does not affect me. However, there are certain recommendations to follow if you have had a decrease in your kidney function (ask your oncologist). One of the most important is to avoid non-steroidal anti-inflammatories (e.g., motrin, alleve) and stick to tylenol if you can. The NSAIDS reduce prostaglandin E2 levels and can cause a decrease in blood flow into the structures in the kidney that filter your blood.
3. Eyes: Again, those with TBI are at greater risk of cataracts. You should have a routine eye exam every year.
4. Skin: Those who have had TBI (and anyone for that matter), should have yearly skin examinations, because of the increased risk of skin cancers with age in general, and after radiation in specific.
I don't mean to alarm any of you warriors who have survived your AML through BMT. I just don't want anyone to forget the rest of his or her body in the process. We have all gone through so much, it is easy to avoid being bothered further by medical evaluations. Nevertheless, these things should be periodically checked.
Cliff
As I have said, ad nauseum, I don't read about my AML or the statistics relating to my survival post-transplant. That statement is not made flippantly. What I have always meant by that is that I do not read about or fret about things that I cannot influence. That being said, I DO read about the long-term sequelae of BMT and what I can do to forestall these late issues.
1. Osteoporosis: There is no question that there can be significant bone loss following transplantation. My DEXA scan about a year after transplant revealed osteoporosis. I have been treated with denosumab (an antibody that blocks the RANKL receptor on the cells in the bone that break down the bone structure). It is administered 2 x a YEAR and after 1 year, I was in the osteopenic range and no longer osteoporotic. I would recommend that all of you who have had transplants get a DEXA scan (if you have not already) and begin treatment for osteoporosis if you have it. Be sure to check your Vitamin D levels. Many Americans are deficient and low Vit D reduces the absorption of calcium by the gut. You should also probably be taking a calcium supplement anyway (like Citrical) and doing some weight-bearing exercises.
2. Kidney problems: Those of you who have had TBI (total body irradiation) are at risk for some kidney issues. I lost some of my kidney function, but it has stabilized and it does not affect me. However, there are certain recommendations to follow if you have had a decrease in your kidney function (ask your oncologist). One of the most important is to avoid non-steroidal anti-inflammatories (e.g., motrin, alleve) and stick to tylenol if you can. The NSAIDS reduce prostaglandin E2 levels and can cause a decrease in blood flow into the structures in the kidney that filter your blood.
3. Eyes: Again, those with TBI are at greater risk of cataracts. You should have a routine eye exam every year.
4. Skin: Those who have had TBI (and anyone for that matter), should have yearly skin examinations, because of the increased risk of skin cancers with age in general, and after radiation in specific.
I don't mean to alarm any of you warriors who have survived your AML through BMT. I just don't want anyone to forget the rest of his or her body in the process. We have all gone through so much, it is easy to avoid being bothered further by medical evaluations. Nevertheless, these things should be periodically checked.
Cliff
Cardiovascular health: The risk of accelerated cardiovascular disease, especially in men, is increased following transplant. This may be due to the release of inflammatory substances after transplant. Please have your lipids checked and get on the appropriate therapy if the levels are high. It is probably wise to try to get LDL levels to less than 100. Even better would be 70 or below. Also, make sure that your blood pressure is in the normal range, and do as much exercise as you can.
Cliff
Thanks so much for your invaulable advice. We are all so focused on the treatment of AML that we tend to overlook the other issues which can arise. I have always appreciated your insight and trust you as much as I trust David's doctor. Thanks so much for always providing all of us with such important information. You are our angel.
Myra
I gal who had tbi five years ago had to have hip replacement surgery, she was in her early forties. Although I am consolidation only my med team stressed that I get my mamo, pap smear, and cardiologist. Having aml makes us more prown to other cancers.
What about specific advice for women, if any?
Hugs
I had read very early in the treatment about the Skin and looking after it... Being in Australia which is mostly always sunny I let mum know and told her even if she was just going for a walk outside she should always wear sunscreen.
Whilst we always would be sun smart she has just turned it up another notch to look after everything :)
For those in Australia, there is a great sunscreen "spray" by Neutrogena which is 50 and it is very light so you don't have that "gluggy" feeling when wearing it .
xx
Cheers
Boris
Being prudent also includes giving yourself a kick in the a.. any time you let the memories of AML bring you anxiety or sadness. I was getting skin exams before this happened. I have had 2 colonoscopies and am about to get another one. I get my eyes examined every year. I probably would not have had the DEXA scan, however, had I not had a parathyroid adenoma (benign tumor) nearly 10 years ago. (Parathyroid tumors produce a lot of PTH, the hormone that causes resorption of calcium from the bone.) So I had osteopenia even before the AML saga. But now, I am being treated and responding. Forewarned is forearmed as the saying goes.
Beyond doing the tests that are appropriate, FORGET ABOUT YOUR AML. Live your life, eat well, make sure your lipids and blood pressure are optimized. Once you have done EVERYTHING you can to keep healthy, think of yourself as a person who never had AML.
Hawthorne wrote about a woman who had to wear a scarlet A for being unfaithful. We have all been faithful to our bodies since learning about our diagnoses, and have gone through Hell and back to get well. There is no reason for any of us to wear an "A" for AML for the rest of our lives.
Cliff
The only thing I will add is that with these treatments, it is very important to protect your skin from the sun. Long sleeves, broad hats and plenty of sun screen.