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

Posted by dell @dell060969, Aug 16, 2017

Newly diagnosed with AML, what to expect?

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jan8 | @jan8 | Jul 1, 2023

In reply to @loribmt "Hi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML..." + (show)

Thank you!!! Through the registry I was very fortunate to have three 100% matches. My transplant team chose a 26 year old female from Europe. That is all the information they would give me. Since I am in Illinois and the hospital is in Wisconsin, we will relocate for approx. 90 days. It is so wonderful having your support. You are great!! God Bless you all.
Jan

alive | @alive | Jun 30, 2023

In reply to @jan8 "I would just like to thank everyone who responded to my emails about my AML diagnosis..." + (show)

That’s such a great news! I know it’s both exciting and scary. I will be celebrating my transplant anniversary on Aug 4. It will be seven years for me. I don’t have any regrets about it and am thankful to be cancer free! I will be praying for you!

I also remember getting a folder -so much information and everything was new to me. It takes a while to process and understand it. Don’t feel like you are studying for a test when you read it. It will be your reference manual, and you will go back to certain sections when need arises. I like to highlight important points, so it’s easier to find it later.

Hospital are requiring to provide this information to patients because this is a serious and life changing treatment.

kt2013 | @kt2013 | Jun 30, 2023

Hi, Jan. Congratulations on completing this part of your AML treatment! The big binder can be very intimidating to read, I agree. But I would encourage you to keep it handy, so that if you think of something, you can look up the answer. Your transplant team will be the experts who will walk along with you on this journey. Ask them anything you have questions about. Keep their phone numbers and contact information handy.
I just celebrated my 10 year transplant anniversary on 6/20/23. While I would prefer to never have had this experience, AML taught me to slow down and treasure every day with an attitude of gratitude. I will keep you in thought and prayer as you continue on your journey.

edb1123 | @edb1123 | Jun 30, 2023

In reply to @loribmt "Hi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML..." + (show)

Congratulations to @jan8 on your upcoming transplant! After all you’ve been through, I think you will find the actual transplant process to be anticlimactic! Mine took a total of 45 minutes and then they let me go home! 😊 Of course I had to go to the clinic every day afterwards but it was surprisingly quick and easy. I will celebrate my 3rd re-birthday on July 22nd, and I am living a normal life - golfing and pickleball! Best wishes to you and I look forward to hearing how it goes for you!

Lori, Volunteer Mentor | @loribmt | Jun 30, 2023

In reply to @jan8 "I would just like to thank everyone who responded to my emails about my AML diagnosis..." + (show)

Hi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML and now heading for transplant and the rest of your life. ☺️

I know @edb1123 @kt2013 @alive will be as emotional as I am for your opportunity for a 2nd chance at life. In fact, I just celebrated my 4th Re-birth Day 2 days ago! I would absolutely not be alive if I hadn’t had the transplant. At this moment, I’m sitting on the deck watching the sun dance on the lake. It’s “happy hour” and though my drink of choice now is Bubbly water, I’ll toast to your successful transplant!

I think you’re making great choice by not reading the binder full of information. It all sounds so scary but in reality most of it won’t apply to you and you’ll deal with whatever happens when or if it happens. Your team will get you through everything!
Most importantly, learn to trust your transplant team. Follow their directions and let them do the worrying for you.

I wish you all the best and please know that we are all here should you have any questions. We’ve walked this same walk and had the same fears. Hugs and positive thoughts!!
Where will you have the transplant? Do you have to relocate for a few months?
And of course…your donor? Any info?

jan8 | @jan8 | Jun 30, 2023

In reply to @loribmt "Hi Jan8, I just wanted to pop in today to see how you are. Have you..." + (show)

I would just like to thank everyone who responded to my emails about my AML diagnosis at the beginning of this year. I was so scared, afraid, and depressed. Your encouragement gave me hope and I'm happy to say that next week I'll be entering the hospital for a stem cell transplant. I have tried my best to focus only on joy and gratitude but must admit getting nervous now. I was given a binder of information to expect, but I really don't want to know. I'll experience it as it happens. Thanks again, and please send happy thoughts and prayers my way.
Jan8

Lori, Volunteer Mentor | @loribmt | Jun 30, 2023

In reply to @joycek "What is your average red blood , platelets and white cell count? Curious because mine keep..." + (show)

Hi @joycek, it’s been a while since we’ve talked and I was wondering how you’re doing. Several months have passed since your diagnosis with AML. I know you had a bone marrow biopsy in April. Was there a determination of a gene mutation with the AML? Are you undergoing treatment?

mtob | @mtob | May 4, 2023

In reply to @nicollissa "Dell, I am a Survivor of Acute Myeloid Leukemia (AML); I was diagnosed at age 40...." + (show)

@nicollissa

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

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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??

Lori, Volunteer Mentor | @loribmt | May 3, 2023

In reply to @joycek "What is your average red blood , platelets and white cell count? Curious because mine keep..." + (show)

Good morning, @joycek. I wanted to stop by to see how you’re doing and where you are in your current treatment for AML? Any news about a stem cell transplant?

tyson1221 | @tyson1221 | Apr 19, 2023

In reply to @tyson1221 "Thanks for your comments an info yes pretty nervous about it but I have to go..." + (show)

Would like to hear from others with MDs an Pancytopenia an treatment they are receiving

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