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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.)
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
…coming back to edit my post, I find there isn’t an edit option. It’s sticking in my mind that I can’t be certain the specific phrases told to me at the time of treatment. My mind was overwhelmed (still) and I have Left Temporal Lobe Brain Damage, memory impairment.
Simply want to say I put “You are a Hemophiliac” in quotations, though now realizing I should have said my impression was that is what was told to me.
It’s quite possible the words/phraseology used were not as I quoted, which is an emotional memory…
My Oncologist may have said, “You have Hemophilia”…
Hi Justin, Thank You for your questions and this open discussion provides all of us a platform to learn and help one another, so I encourage questions and none are ‘too personal’ to answer when the very nature of answering may provide life sustaining information. I only hope that what I have to say is accurate and concise.
It was a confusing situation at the time and the body was experiencing a myriad of complexities that the doctors were treating. I won’t go into those situations unless someone specifically asks. I hope to offer support to someone seeking, based on what their needs are, and not needlessly overwhelm anyone’s mind with details of my personal experience of ordeals that would present concerns about matters they may not experience. I was not expected to survive and was put in the room for Terminal Patients. What I received was “Radical” chemotherapy/treatment. Years later I learned details by obtaining my medical records.
I do recall my Oncologist’s warning “You are a Hemophiliac” while urging me to be diligent to alert someone when I was experiencing severe headaches,
as it could be a burst blood vessel in the brain.
Indeed it was “Symptoms”… as the result of Acute Myeloid Leukemia. I was not diagnosed as having a genetic form of Hemophilia.
Thank you for asking me to clarify and I certainly can understand the anticipation to know of another person who has the condition, to possibly be able to relate with one another on life experiences living with it. I have not ever met someone who lives with the disorder, nor have I met or talked to anyone who has experienced the symptoms of it due to a blood cancer. Your response inspired me to seek information beyond what I experienced (which was at the time managed by attending medical professionals, I only followed their direction).
I experienced the symptoms full effect for approx 4 months. I can relate to the symptoms.
My highest respect to you, I am aware of the amount of energy, fortitude, and perseverance it requires to push through the exhaustion of such…
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:
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.