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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
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
Replies to "Dell, I am a Survivor of Acute Myeloid Leukemia (AML); I was diagnosed at age 40...."
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?
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.)
Thank you Nicole this is so helpful. Very dear friend was just diagnosis with AML. I want to support her through this tough journey. Any suggestions you can share - dos and donts for caregivers??
Connect
thank you so much for your response, more than that, the inspiring message of how long you have survived AML. My husband is 76, has recurrent prostate cancer (been in successful treatment for 3 yrs), has had hemochromatosis for 15 yrs, had 5 bypasses 20
yrs ago, BUT is otherwise a healthy man. He has had anemia lately and although he has not transitioned to AML yet, he is now RAEB with 10% blasts. Today the doc started him on Epoetin Alfa injection and is going to monitor him weekly for the next few wks.
We know very little about this drug except that it has loads of warnings (as do most of these drugs). Maybe some of the members will jump in, I have learned so much just reading about all the subcategories of MDS and how different patients react differently
to the same drugs, it's been mindboggling. Btw, how do I pull up all the answers to this thread?