Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hello.
My dad was recently diagnosed with AML. He was admitted 1feb and being military I was able to come asap. My last day is tomorrow. My dad said its best for me to go back to keep me from worrying so much.
So since I saw him he looked completely fine. He came into the ER for a fever and his CBC results came back as 205. He was quickly admitted and hooked up to get chemo. He was given cytarabine hydroxyurea for his chemo treatment. His fever was consistently high from 103-105 for a week or so. For awhile he suffered from fever with unknown origin. He's been given tons of antibiotics and now he is currently receiving 3 anti fungals. They found a mass in his sinus and removed it. The docs thought it was a fungal infection. Now it has spread to the lungs and they don't know which fungus it is yet. His fevers have gone down to 101 or so being the highest. The fungal infection spread to his lungs and I saw the nodules from the CT they did and they said it wasn't there before. He's been getting transfusions and now his heart is having a hard time now. It's gotten worse. They think it's from all the meds. He was moved to the DOU and yeah. I had a meeting with the whole team of Drs and they don't think it's looking good. Infectious disease said his fungal infection is fatal. His first round of chemo didn't work the doctors said. He has gotten 3 so far. His second one showed 3% blasts. The third showed 10% blasts which was performed today his 22nd day in the hospital. They gave us some options. I'm mostly worried about my dads heart. My dad decided to continue this route of care for now but his heart has been going up to 172 or so. I'm nervous about leaving him. My mom doesn't understand very well and she worries a lot. She doesn't have much support from anyone as they don't have many close friends. I'm an only child and I have to report back to work on Wednesday.
My dad was recently diagnosed with AML. He was admitted 1feb and being military I was able to come asap. My last day is tomorrow. My dad said its best for me to go back to keep me from worrying so much.
So since I saw him he looked completely fine. He came into the ER for a fever and his CBC results came back as 205. He was quickly admitted and hooked up to get chemo. He was given cytarabine hydroxyurea for his chemo treatment. His fever was consistently high from 103-105 for a week or so. For awhile he suffered from fever with unknown origin. He's been given tons of antibiotics and now he is currently receiving 3 anti fungals. They found a mass in his sinus and removed it. The docs thought it was a fungal infection. Now it has spread to the lungs and they don't know which fungus it is yet. His fevers have gone down to 101 or so being the highest. The fungal infection spread to his lungs and I saw the nodules from the CT they did and they said it wasn't there before. He's been getting transfusions and now his heart is having a hard time now. It's gotten worse. They think it's from all the meds. He was moved to the DOU and yeah. I had a meeting with the whole team of Drs and they don't think it's looking good. Infectious disease said his fungal infection is fatal. His first round of chemo didn't work the doctors said. He has gotten 3 so far. His second one showed 3% blasts. The third showed 10% blasts which was performed today his 22nd day in the hospital. They gave us some options. I'm mostly worried about my dads heart. My dad decided to continue this route of care for now but his heart has been going up to 172 or so. I'm nervous about leaving him. My mom doesn't understand very well and she worries a lot. She doesn't have much support from anyone as they don't have many close friends. I'm an only child and I have to report back to work on Wednesday.
It is hard to respond to your father's scenario, except to say to hang in and pray for him. The heart issues can be treated with medications. I don't know what kind of fungal infection could be deemed "fatal," because there are good antifungals out there. I developed a fungal pneumonia during my first round of chemo and it was treated. I think that is very common. I will be thinking about you and your Dad and praying for his recovery. Where is he in the hospital?
Cliff
The treatment puts us in such peril of such infections. I think most people go through some type of severe infection. Do not worry about the diapers. I still cry when I think of my sister running out of the hospital in a Nor'Easter to buy me depends, because the hospital had the type of diapers with tapes that I found impossible to do, and which caused me sufficient embarrassment to ask my dear sister to brave the elements. Patients who are doing badly don't look well. Your father looks well to you, and I am sure that you are a good judge. Doctors often face the dilemma of how much negative information to give a patient and his family. Admittedly, your father is ill. I spent 4-5 days delirious in the ICU (a sojourn that I absolutely cannot remember), with rapid atrial fibrillation, hypotension, and poor blood gases. I always warn patients and their families that there are many SPEEDBUMPS along the road to good health. After becoming so ill so early into my treatment and subsequently developing a bowel issue that used to be treated by total colectomy, I got through it. Sept 8 will be my 5 year survival anniversary. Just send your love to your father every minute you are away from him, and spend as much time as you can with him, encouraging him. Encouragement is not a Pollyannish idea in this disease. Many of us have hit what we think are stone walls, only to develop enough spring in our steps to jump over it. Keep us informed Lala. In case you didn't know, I am a physician and will try to answer any of your questions to the best of my knowledge.
Cliff
My husband was diagnosed with AML in April 2015. He is 73 years old and we were devastated. He did the induction therapy of 24/7 days of chemo. He was in the hospital 4 weeks. He also had a bad infection that cleared up. When he left the hospital for rehab he could not even turn himself over in the bed. With God's amazing power he walked out of rehab in 2 1/2 weeks. His journey was not easy but God pulled him through. Now he is doing great and his last 2 BMB showed no cancer found. Never give up hope and don't listen to the negatives. Always think positive. You might want to get 2nd opinions. I know how hard it must be being an only child. I am an only child but fortunately we lived in the same town. I will keep you in my prayers. You found a great support system on this site. I didn't see where you mentioned your dad's age. Just wanted you to know this disease can be overcome.
Can you tell me more about what happened with your fungal infection? My dad is showing evidence of recovery. His fever has been down to the 99s for a bit today. The Drs said that even with anti fungals without the good cells it would be hard to fight it. His wbcs are up to 0.6 now but with blasts still present along with neutrophils though. Also they haven't seen the infection spread so far like to his sinus cavities or anything so that's good I think.
Urquette,
Thank you for the hug! My dad is only 59. I appreciate you sharing your experience as well. My dad has a strong faith in God and I hope he can overcome this. Today is day 24. I wish my dad electrolytes would get better. Must be because he has diarrhea all the time.
The Drs came and told us about our options later in what we want to do if he ultimately dies from the cancer or the fungal infection. Not saying that was gonna happen but I guess they want a plan in place. We talked about the possible outcomes and we decided to do a DNR because we don't want him to suffer. Is this part of the normal process? I feel like they are bringing it up really early. How would I get a second opinion? I've never done anything like this before.
.
Don't read too much into the advanced directive talk. It is never too early to have that and hospitals are trained to ask for it early just in case.
Keep the idea that your dad is going to make it, but be prepared for all situations. That is what they teach us in the military, right? Please feel free to ask any questions at all. I am active duty Navy....I may be able to help with some questions relating to that part of things too.
John
I agree with John, I was asked about an advanced directive everytime I was admitted for chemo-five times. I never did one because to me it felt too much like giving up. It was a mental thing for me. I'm 51 next month and I've been in remission for almost three years. This disease can be beat.
Urquette,
So great to hear from you and to know your husband is well. What great advise to get on pray lists. I had people praying for me from around the world and I left it. God is the great physician!
Blessings,
Julie
I can't believe it's been a week since I originally posted. It feels like so much longer. My dad changed his mind about me going back to Guam where I'm stationed. I actually got approved for a humanitarian assignment!! It was incredibly fast! My command is doing their best to get me my paper work so I don't have to be away from my dad just waiting around. I have to move to LA by the end of March.
Anyways. There have been signs of some improvement. My dad broke his fever this week. If anything he's been mostly in the 99s for the highest temp. He still eats well but he's so tired of chewing. I feed him now but I think he likes it lol. He's become much weaker though that he barely has energy to get up to the toilet by himself now. His BMs are looking better though which I hope is a good sign. My biggest issue now is his heart rate. He was on 15MG of diltiazem for his heart rate and today they added digoxin to that since the dosage was getting high and his hr is all over the place.
He gets another ct on Monday to check on his fungal infection. The dr said also that he thought he saw some fluid in his lungs and diuressed him. But he said he couldn't tell if it was fungus or not. Hopefully it was only fluid.
They haven't figured out yet which fungus it is. The dr was like well he's on all of them so whatever it is it's being treated-but I would like it if he could get off the meds he doesn't need.
Sorry, I did not see your question. My fungal pneumonia was treated at a time when I too had not cells to fight it. Nevertheless, the treatment worked. I think your Dad's doctors are doing the right thing. In the absence of an identified fungus, it is smart to keep him on the multi-drug regimen. It sounds as if he is improving, and that makes me happy.
Cliff