Acute myeloid leukemia (AML): What can I expect?

Claire, I’m happy you’re able to get the virtual visit. At least you’ll be able to connect with the oncologist and have a few questions answered. Have a note pad handy. The isolation is a concern but frankly, through the 5 weeks i was in the hospital last year for the initial chemo, only my husband could visit and occasionally my adult daughter. That was long before CV-19. He would stop up once a day for maybe an hour. The rest of the time i was quite content to stay in touch with friends and family via my iPad. The chemo nurses were so caring and truly, became my family while I was in the hospital. Your husband may not have to be in that long and really, it’s nothing compared to “not being alive’ if you put it into perspective! As for quality of life afterwards? After the initial chemo, within a month he’ll probably feel fairly normal again. Occasionally there is some nausea during treatment. There are many meds available for that. Also he may lose his sense of taste for a few weeks. Our bodies regenerate quickly. There is a period of about a week where he’ll feel extreme tiredness and weakness while the blood count is low. Within days, however, the body starts recovering, making new white blood cells and it’s quick rise back to feeling pretty well again. Fear of the unknown is what is the most threatening. It’s daunting and scary. But many of my friends (whom I met during this journey), are alive and thriving. Some with transplants, some without. Depends on the type of AML. So don’t lose hope! This is survivable! Reach out anytime and don’t hesitate to send a private message. Good luck tomorrow.

Hi @claireb, I'd like to add my welcome to @loribmt's. You mention that your husband will be starting with a virtual visit. You might find the advice from fellow members in this discussion to be useful:

- Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

If you scroll to the end of this web article, you'll also find further information about questions to ask and more. This might be a good starting place to read before talking with someone at the American Cancer Society. They will be able to prepare more in-depth questions specific to your husband.

I'll let Lori and @grandpabob share their experiences about precautions he'll have to take because of the compromised immune system and isolation from family. That is tough. But that is a reality of leukemia with or without COVID. Those will be important and wise questions to ask the care team, too.

<p>My 74 year-old husband was diagnosed 1 day ago with Acute myelogenous leukemia (AML). He is hospitalized right now and will be transferred to the U of MN tomorrow. He is in otherwise good health. He is weighing whether or not to proceed with treatment. He's been told if he doesn't have treatment, he has weeks to live. Does anyone out there have this diagnosis? Treatment experiences? I am numb since hearing of this diagnosis. What a time to be hospitalized in this age of the Covid-19 pandemic!</p>

<p>My 74 year-old husband was diagnosed 1 day ago with Acute myelogenous leukemia (AML). He is hospitalized right now and will be transferred to the U of MN tomorrow. He is in otherwise good health. He is weighing whether or not to proceed with treatment. He's been told if he doesn't have treatment, he has weeks to live. Does anyone out there have this diagnosis? Treatment experiences? I am numb since hearing of this diagnosis. What a time to be hospitalized in this age of the Covid-19 pandemic!</p>

Claire, I’m so sorry to hear of your husband’s diagnosis. It’s devastating to get news like that out of the blue. I can empathize with you and your husband regarding treatment.
My AML journey started last year, February 2019. I had just turned 65; Robust, healthy, walking 10 miles day. Within 3 weeks that all changed. AML strikes quickly and randomly. But there is hope! I didn’t hesitate to start chemo. Living was paramount. If nothing else, that first round of chemo buys more time to spend with family! My AML-FLT3 mutation put me in a higher risk for relapse. So my only hope for a long term solution was a bone marrow transplant. I am thrilled to say I just completed testing for my upcoming 1st anniversary Post Transplant the end of June. So far so good...
So, from my perspective I’d say a resounding YES to starting initial treatment with the first round of chemo to clear most of the leukemic cells from your husband’s body. It’s not the end of treatment however! Depending on the results of bone marrow tests, your husband’s course of treatment will be discussed and planned out with you and your husband.
Not everyone’s treatment needs to end with a transplant. But it will begin with that all important first round of chemo.
This CV-19 situation is of concern. However, because of your husband’s diagnosis, he’ll be under a strict protocol for isolation to avoid infection as his immune system is already compromised with the leukemia. He’ll be safe. You’ll both learn to trust the Oncology team to take care of your husband’s needs. The oncologists and their staff will answer questions, provide you with information and should be able to give you some peace and comfort. Since this is so fresh in my mind, I’m more than happy to answer any questions or offer moral support. Stay strong, stay positive...you’ve got this!! Lori.

<p>My 74 year-old husband was diagnosed 1 day ago with Acute myelogenous leukemia (AML). He is hospitalized right now and will be transferred to the U of MN tomorrow. He is in otherwise good health. He is weighing whether or not to proceed with treatment. He's been told if he doesn't have treatment, he has weeks to live. Does anyone out there have this diagnosis? Treatment experiences? I am numb since hearing of this diagnosis. What a time to be hospitalized in this age of the Covid-19 pandemic!</p>

Dell,
I am a Survivor of Acute Myeloid Leukemia (AML); I was diagnosed at age 40. Treated in Puyallup WA.
The first thing I can recall after the Bone Marrow Biopsy confirmed AML - I was informed as to the nature of such cancer means a person is a Hemophiliac/bleeder, and the Immune System is suppressed/gone. I was told not to do anything that would put my life at further risk such as
gardening, eating fruits, being around children, animals, sick people, even reading magazines... all things that transfer parasites, germs, etc.

I was hospitalized, a surgery placed a "Hickman Catheter" beneath the clavicle bone (to secure) into the Aorta; the valve is bandaged upon the external upper chest. The Hickam Catheter is used to administer Chemo, Pain Meds, Blood and Plasma Transfusions.

Chemo will be determined by the Oncologists; chemotherapy is customized to the patient and from what I've experienced no person can truly speak to what another person will receive or how they will tolerate it. I can tell you that my husband (at the time) was told to get my affairs in order and a Priest gave me my last rights... 14 years ago. The advance the medical world has made to treat this cancer is astounding.

You will learn keywords and phrases:
Blood counts
Induction is the Chemotherapy that is used to put cancer into Remission
Heparin an anticoagulant used to keep the Hickman Catheter lines open and clean
Neutropenia, Neutropenic, Neutrophils: these words are associated with White Blood count usually in reference to Suppressed Immune System

Potassium levels in my case dropped frequently. I was often admitted to the Hospital for Blood Transfusions, and Plasma Transfusions to raise my Potassium.
(if I remember correctly, it's very difficult to remember)

In my case, I was in the hospital receiving Chemotherapy/treatment for 1 month. Bloodwork was taken frequently to take "Counts"... close monitoring... even a cold/flu receives attentive monitoring to ensure blood vessels haven't burst in the brain during a sneeze

I kept the temperature in my room at a very cool level. So much so that the nurses didn't like it. It was instinctual / what felt best for me. The chemo makes you feel overheated. I believe the cool temperature contributed to the absence of nausea.

I kept my mind on higher things and didn't think of having cancer. I asked for a radio and kept it on soft jazz (I don't even listen to jazz), the soothing instrumental music helped keep the mind calm and low stress enables regeneration

Depression is expected but I don't remember going through it because I kept myself distracted and created small hobbies: crochet projects, even bought some coloring books and crayons at the Dollar Store...
I think Depression is a high risk to the Family members of the patient, so take time to give yourself the breathing room and grounding you need to keep your body and mind sturdy

There was a talk with my Oncologist about Bone Marrow Transfusion; I didn't go that far.

My name is Nicollissa, I go by Nicol (Nicole). I will respond ASAP to any messages from you.
Warm Embrace

Dell,
I am a Survivor of Acute Myeloid Leukemia (AML); I was diagnosed at age 40. Treated in Puyallup WA.
The first thing I can recall after the Bone Marrow Biopsy confirmed AML - I was informed as to the nature of such cancer means a person is a Hemophiliac/bleeder, and the Immune System is suppressed/gone. I was told not to do anything that would put my life at further risk such as
gardening, eating fruits, being around children, animals, sick people, even reading magazines... all things that transfer parasites, germs, etc.

I was hospitalized, a surgery placed a "Hickman Catheter" beneath the clavicle bone (to secure) into the Aorta; the valve is bandaged upon the external upper chest. The Hickam Catheter is used to administer Chemo, Pain Meds, Blood and Plasma Transfusions.

Chemo will be determined by the Oncologists; chemotherapy is customized to the patient and from what I've experienced no person can truly speak to what another person will receive or how they will tolerate it. I can tell you that my husband (at the time) was told to get my affairs in order and a Priest gave me my last rights... 14 years ago. The advance the medical world has made to treat this cancer is astounding.

You will learn keywords and phrases:
Blood counts
Induction is the Chemotherapy that is used to put cancer into Remission
Heparin an anticoagulant used to keep the Hickman Catheter lines open and clean
Neutropenia, Neutropenic, Neutrophils: these words are associated with White Blood count usually in reference to Suppressed Immune System

Potassium levels in my case dropped frequently. I was often admitted to the Hospital for Blood Transfusions, and Plasma Transfusions to raise my Potassium.
(if I remember correctly, it's very difficult to remember)

In my case, I was in the hospital receiving Chemotherapy/treatment for 1 month. Bloodwork was taken frequently to take "Counts"... close monitoring... even a cold/flu receives attentive monitoring to ensure blood vessels haven't burst in the brain during a sneeze

I kept the temperature in my room at a very cool level. So much so that the nurses didn't like it. It was instinctual / what felt best for me. The chemo makes you feel overheated. I believe the cool temperature contributed to the absence of nausea.

I kept my mind on higher things and didn't think of having cancer. I asked for a radio and kept it on soft jazz (I don't even listen to jazz), the soothing instrumental music helped keep the mind calm and low stress enables regeneration

Depression is expected but I don't remember going through it because I kept myself distracted and created small hobbies: crochet projects, even bought some coloring books and crayons at the Dollar Store...
I think Depression is a high risk to the Family members of the patient, so take time to give yourself the breathing room and grounding you need to keep your body and mind sturdy

There was a talk with my Oncologist about Bone Marrow Transfusion; I didn't go that far.

My name is Nicollissa, I go by Nicol (Nicole). I will respond ASAP to any messages from you.
Warm Embrace