Mayo Clinic Connect
Newly diagnosed with AML, what to expect?
Hi, Dell. I really feel badly for you. AML seems to be a really tough thing. I just put it in a couple search buttons, and found a pile of stuff. It seems to be rather closely related to my AL Amyloidosis. About the only truth thing I can say for sure about it is that you will shortly find that you seem to know as much about it as do your doctors. So you must keep learning. Read all the stuff you can find. Books. Videos. Articles. Sign on to the NIH, Clinical Chemicals, Hematology Journal, and anything else you can find from those Google and other search engines. And keep track of your life. In notebooks, computer files, whatever. I wish I could get my local clinic to give me a good horse check every week. BP, A1c, Protein, etc. I could not, so I have done it myself. You can see it at http://bit.ly/1w7j4j8 . And insist your clinic system find you a doc who can help. I eventually called Mayo MN and talked with their alumni office. I asked for any grads who work in my area in hematology or anything else that might work. If they cannot find anyone, call Memorial Sloan Kettering, or University of Utah or whatever. Remember, there is more professional jealousy in medicine than in any field outside of presidential politics. So do not just take someone’s word that he or she is an expert in AML. Check it out. And God bless you in your work. oldkarl
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oldkarl, thank you so much for taking the time to reply. It is my husband who has gone from RCMD to ACL. In fact, had bone marrow biopsy this morning to determine status of blasts, hgb went to 7.3, had 2 units of blood yesterday and today, brought it up, first time for blood. He has severe anemia (his main complaint is fatigue) is 76 years old, I might add until the MDS diagnosis last July is a young 76. How long have you had ACL, what treatments are you getting, are they helping, have you had any remission? With all your research, what is the average prognosis for a 76 year old? Medical info is at times so technical we cant understand it but we’re trying. Folks like you are becoming my go-to as I try to get a handle on what we’re facing and is there hope with this horrible disease.
Well, Dell, I always try to help. I am 77 (April), and I actually know very little. But I can read. Some time back I had a good friend who was a very kind and capable doctor. She told me some of her thoughts and guidelines. First, if a person is our age and feeling good, there is nothing to make us think we will not live to 100. If something shows up that we can deal with in the space of a couple months, make that perhaps 95. If it really impacts our lives, and we need about 5 years to deal with it, we might make 90. If it is chronic, and will last, make the lifeline 85. If it is acute, 80. If the doctor wants paid in advance, make certain your will is in order. My guess is that I have about a year.
I have been anemic for about 60 years, and had some form of Amyloidosis for about 40 years. But both are progressing, so I expect about a year or so. Depends on how warm my wife wants to be with me. At my age and situation, no one has offered me any treatments. The stats say that I have more danger of dying from the treatments than from the diseases, so I guess I will just keep going until I see the brown side of the grass.
Karl, cant imagine what 60 yrs of anemia feels like, you must have some inner strength to have tolerated this condition. Us older folks have less tools with which to fight off most anything, growing old is not for the weak of heart.
Thanks, Dell. However, I must say that I have not always tolerated it with strength and grace. I have not always been able to deal graciously with an idiot boss, or cranky family, or know-nothing business people. Sometimes when I am laying awake at night with the pain I catch myself regretting bunches of little things I did during the day that I wish I could change. Right now I know I made a decision about my disorder that will cost me years of my life, but there is nothing I can do about it. The lab my samples went to, because I said OK when I was hurting bad, does not have the equipment to handle the samples properly, and I cannot go through another bone and bone marrow biopsy just yet to send the stuff to an atomic-force microscope equipped lab.
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.
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)
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…
Liked by Justin McClanahan
…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”…
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?
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
@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.
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.)
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