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
Dear "Dell", if I can in some small way offer relief to your mind via what I have to share it is a sense of 'calling' to do so. So many people contributed to my survival in so many ways. I began having serious medical problems in my 20s. I can relate to the mind boggling process of needing to absorb medical information. I haven't any knowledge of the type of treatments your husband is currently receiving.
I'm brand new 'here', joined last evening after reading your post to be able to respond to your request. It was a bit Serendipitous - Mayo Clinic showed up in my Facebook thread... I hadn't Followed Mayo Clinic and only joined Facebook a few months ago...
Thus, I haven't posted anything that people would reply to, so I can only take a guess how to open up the thread to view all of the replies to your post - I'm thinking if you go to "My Profile". If that doesn't work, type "can someone address acute myeloidal leukemia ?" into the search box. I would give you the link but the system rejects it when I attempt to post.
Justin McClanahan is a Moderator and is a source of knowledge at this website whom I am certain will help you when you need guidance.
I tried to provide some links yesterday for you, but since I was new to join, I was not yet permitted to providing links.
(again the links are rejected/I'm not yet permitted to provide them)
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
@dell060969, to see all of the posts on this thread, if you are replying by email, scroll to the bottom of this message in the email notification and click on VIEW & REPLY. That will take you directly to the full discussion. Did this help?
Hello @nicollissa and welcome to Connect! Thank you for sharing so much with @dell060969 regarding your AML diagnosis, your words of encouragement and your willingness to answer and questions Dell has. I especially appreciated your tips on how to recognize and avoid depression while going through treatment.
@nicollissa, right off the bat you mentioned something that caught my eye, hemophilia. If you are comfortable sharing a bit more about yourself, were you born with hemophilia or were you told that because your platelets were so low that you had hemophilia like symptoms of bleeding risk? I only ask because hemophilia is a genetic disorder and believe it or not, I am actually a hemophiliac! Naturally, my ears always perk up a bit when I hear or see that words because it is a rare disease and I don't ever meet many people with hemophilia. Even if you were not diagnosed with hemophilia but experienced hemophilia like symptoms, I can certainly relate to that part of your experience.
(If you are replying by email, it is always best to click VIEW & REPLY at the bottom of a notification to see the full discussion on a browser)
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
Not being able to provide links is a temporary thing on Connect. After you make a few more posts, or are a member of Connect for a certain period of time, that is an ability that will become available to you. I also reccomend you scroll to the bottom of this message in your email notification if that is how you are responding an click on the VIEW & REPLY button. That button in your email will take you to the discussion on the website where your responses have been posted. This is also how you can see more discussions, start discussions, or view the Hematology Page on Connect. I hope this helps you navigate the site a bit better. It is always best practice to click on the VIEW & REPLY on your emails at the bottom of members' posts so that you can see them in order on the website. The other advantage of viewing the discussion on the website vs. your emails is that sometimes long messages are cutoff before they are done in emails.
I would be happy to answer any more questions you may have about the site. @nicollissa, your first few posts are what we love seeing on Connect, encouraging, supportive, and empathetic. I look forward to seeing more posts from you on Connect!
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
Thank You, Justin, for the encouragement and the valuable tips. I do intend to participate further, will slowly get my feet wet here and there until I compose my mind, emotions, etc. (I was able to provide the link via private message.)
<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.
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.
Thank you so much for your reply. We are having a virtual visit with a U of M oncologist tomorrow to discuss options and everything else. The biggest things we are concerned about is the isolation from family if he opts for treatment and the quality of life after treatment. We have many more questions that we haven't thought about. The nurse navigator from the oncology dept suggested we go to the American Cancer Society to help us formulate questions for our virtual visit. I may be in touch again.
<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>
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:
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.
Connect
Connect
Like
Helpful
Hug
Dear "Dell", if I can in some small way offer relief to your mind via what I have to share it is a sense of 'calling' to do so. So many people contributed to my survival in so many ways. I began having serious medical problems in my 20s. I can relate to the mind boggling process of needing to absorb medical information. I haven't any knowledge of the type of treatments your husband is currently receiving.
I'm brand new 'here', joined last evening after reading your post to be able to respond to your request. It was a bit Serendipitous - Mayo Clinic showed up in my Facebook thread... I hadn't Followed Mayo Clinic and only joined Facebook a few months ago...
Thus, I haven't posted anything that people would reply to, so I can only take a guess how to open up the thread to view all of the replies to your post - I'm thinking if you go to "My Profile". If that doesn't work, type "can someone address acute myeloidal leukemia ?" into the search box. I would give you the link but the system rejects it when I attempt to post.
Justin McClanahan is a Moderator and is a source of knowledge at this website whom I am certain will help you when you need guidance.
I tried to provide some links yesterday for you, but since I was new to join, I was not yet permitted to providing links.
(again the links are rejected/I'm not yet permitted to provide them)
I'll be in touch as I 'see' you
Warm Embrace
@dell060969, to see all of the posts on this thread, if you are replying by email, scroll to the bottom of this message in the email notification and click on VIEW & REPLY. That will take you directly to the full discussion. Did this help?
thank you, Justin, I dont have "view and reply", only "reply". thx.
@nicollissa,
Not being able to provide links is a temporary thing on Connect. After you make a few more posts, or are a member of Connect for a certain period of time, that is an ability that will become available to you. I also reccomend you scroll to the bottom of this message in your email notification if that is how you are responding an click on the VIEW & REPLY button. That button in your email will take you to the discussion on the website where your responses have been posted. This is also how you can see more discussions, start discussions, or view the Hematology Page on Connect. I hope this helps you navigate the site a bit better. It is always best practice to click on the VIEW & REPLY on your emails at the bottom of members' posts so that you can see them in order on the website. The other advantage of viewing the discussion on the website vs. your emails is that sometimes long messages are cutoff before they are done in emails.
I would be happy to answer any more questions you may have about the site. @nicollissa, your first few posts are what we love seeing on Connect, encouraging, supportive, and empathetic. I look forward to seeing more posts from you on Connect!
Thank You, Justin, for the encouragement and the valuable tips. I do intend to participate further, will slowly get my feet wet here and there until I compose my mind, emotions, etc. (I was able to provide the link via private message.)
How are you?
<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.
-
Like -
Helpful -
Hug
4 ReactionsThank you so much for your reply. We are having a virtual visit with a U of M oncologist tomorrow to discuss options and everything else. The biggest things we are concerned about is the isolation from family if he opts for treatment and the quality of life after treatment. We have many more questions that we haven't thought about. The nurse navigator from the oncology dept suggested we go to the American Cancer Society to help us formulate questions for our virtual visit. I may be in touch again.
-
Like -
Helpful -
Hug
1 ReactionHi @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.