Info on AML please

jemb · May 23, 2004

Sorry to hear about your friend's illness.

Have had many patients with AML. It is not unusual for them to have multiple transfusions while undergoing treatment, but there is treatment available. Young people generally have a better response.

Some websites that might answer more of your questions are http://www.cancer.com , http://www.leukemia-lymphoma.org, http://www.cancerfacts.com , and http://www.cancersource.com.

SCRN1 · May 24, 2004

Thanks, jemb! I wish I could go and talk to the Dr. myself because the husband is really new to all this and doesn't really understand what the doc is talking about, so he calls me to ask and either can't remember everything said or gets some of it mixed up. It would help if I heard from the doc and then explain it to the husband if you know what I mean.

I'm wondering what he meant about that in the lungs...if it metastasized to the lungs or if there's something about AML that affects tissues. I do remember something about it doing something to other tissues/organs because, obviously, the blood being carried everywhere throughout the body and these cells are carried along with what's left of the "good" ones.

If it's something that's metastasized to the lungs or even if it is pneumonia given that she's in such a weakened state, I'm wondering what her chance is of surviving right now. How she'll react to the chemo they're starting tomorrow, etc? They also wanted to start transfusing blood today, but having a hard time finding a match. Hopefully, they can start it tonight or tomorrow.

Sorry if I'm not making much sense. Lots of worry and not much sleep the past few days.

BeenThereDoneThat74, MSN, RN · May 24, 2004

So sorry to hear about your friend. I work in peds, so my statistics and experiences are not quite the same. Many kids with AML will go for a bone marrow transplant as soon as they get into remission, because the chance of cure after relapse is very slim. On a positive note, I have seen manty AML kids do well after transplant, and a couple who did well without it.

The lung thing could likely be a fungal infection, very common with leukemias. So is pneumonia (pcp pneumonia specifically). What state are you in?

Best of luck to you and your friend.

caroladybelle, BSN, RN · May 25, 2004

What has happened with your friend is a classic presentation of AML.

AML is throughout the entire blood system...there is no mets so to speak. However, as the white blood cells (and sometimes red cells and platelets) are low, patients are prone to infection, fungal, viral and bacterial. This is most likely what the MD is going to do a Bronchoscopy to take samples and culture for.

The other classic lung problem with AML is Leukostasis. Sometimes AML patients will develop lung infections...the body pumps out WBCs, many defective (Blast cells) and unable to fight infection. The infection worsens (d/t blasts unable to work properly) so Body trying to heal itself pumps out more and more WBCs (including more and more Blasts), until the white count is excessively high and the Blast percentage is high. The white cells crowd out red cells (which carry oxygen), especially around the site of infection (the lung). Oxygen transport to the body is seriously impaired and the patient may have to go on the vent to have enough oxygen, have WBC's pheresed out, etc. As this not diagnosed with Bronchoscopy and your friend's levels are low (per your post), this would not be the issue.

Chemo "Induction" for AMl generally requires 4-6 weeks in the hospital. A central IV is placed. The usual regimen is 7 straight days of continuous ARA-C infusion. During the first 3 days, there are boluses/IV pushes of Idarubicin or Mitoxantrone (ocasionally other meds). Patient rarely has nausea or discomfort during the chemo, due to the use of high dose decadron with antiemetic (Kytril, anzemet or zofran). They are also on allopurinol to eliminate tumor breakdown byproducts. About 3 days after completion of the 7 day regimen, patient will become pancytopenic (called "nadir")and usually require transfusions. Nadir lasts about 7-14 days, and then recovery will start. During nadir, the white counts are so low that the patient's own bodily flora can infect them lethally. The patient is frequently on multiple antibiotics. During this time, the patient feels very acutely ill though in a generalized overall fashion due to pancytopenia and opportunistic infections.

About 2-3 weeks after Day #1 of chemo, repeat bone marrow biopsy is done to see how the chemo worked. After assessing the results, repeat chemo (consolidation or reinduction is planned after patient recovers sufficiently) is decided on. Generally Induction or reinduction is the most unpleasant....followup consolidation is not as difficult.

The patient will lose their hair.

PLease PM me if you have other questions. AML is kind of complicated

SCRN1 · May 25, 2004

Thank you, bonemarrowrn & caroladybelle. My friend was just transferred to ICU at 2 o'clock this morning. The pneumonia has gotten worse. The doc explained to her husband they're in a catch 22. He's not sure she's got enough healthy blood cells to survive the chemo, but without the chemo, she's going to get more leukemic cells (blasts, I'm assuming?). I asked him what the percentage of blasts were, but of course, he didn't know to ask about that.

Have you seen anyone in this condition being able to fight it and survive? This has happened so suddenly and she just started the chemo today.

BeenThereDoneThat74, MSN, RN · May 25, 2004

Have you seen anyone in this condition being able to fight it and survive? This has happened so suddenly and she just started the chemo today.

Anything is possible. One of my first onc. pts. was a 4 month old, intubated in the picu, because his r/o uri got so out of control (hello...it was AML, maybe that's why!!!). This was over 3 yrs ago. Last I heard he's a happy 3 1/2 y/o (knock on wood) :) . Keep praying, and stay on top of those docs and nurses

caroladybelle, BSN, RN · May 25, 2004

Thank you, bonemarrowrn & caroladybelle. My friend was just transferred to ICU at 2 o'clock this morning. The pneumonia has gotten worse. The doc explained to her husband they're in a catch 22. He's not sure she's got enough healthy blood cells to survive the chemo, but without the chemo, she's going to get more leukemic cells (blasts, I'm assuming?). I asked him what the percentage of blasts were, but of course, he didn't know to ask about that.
Have you seen anyone in this condition being able to fight it and survive? This has happened so suddenly and she just started the chemo today.

Actually I have had plenty of patients survive this. As in the previous post, I have had a number of patients in either pneumonia or leukostasis affecting the lung need to be intubated and put on the vent to receive enough O2. (note. leukostasis can affect other organ groups but lung is the most common/threatening one). The other reason for the unit as she may require leukopheresis (dialyzing out WBC's..dangerous and requiring close monitoring), multiple transfusions of FFP, PRBC's, and Platelets on a daily basis, and multiple IV antibiotics/antimicrobials, some of which affect electrolytes and may require infusions with telemetry. Some of these things are hard on kidneys also, and require close serum monitoring.

Expect that her recovery may be lengthened as she as coming in a crisis Hospitalization for 4-7 weeks is not terrribly uncommon.

Numbers to ask for are the WBC's (problem if greater than 50,000 - generally read in number 50 with the 000 left off any many cases) and percentage of Blasts. Percentage of neutrophils will be important to monitor in recovery from the chemo.

Healthy issues. Make sure she gets frequent mouthcare with alcohol free products ..at least every 4 hours while awake. Especially if intubated. Best mouth rinse is plain normal saline unless she develops mouth ulcers and/ot thrush. Then the MD should add magic mouthwash/medicated mouthwash and/or nystatin. Most of these patients develop mucositis/pharyngitis if not very careful. Avoid alcohol (lemon swabs/commercial mouthwash) as it is drying to the mouth and worsens the problem.

Let us know if you have more questions.

SCRN1 · Jun 3, 2004

My friend is still in ICU in the induced coma and on the vent. Her vitals have been remaining stable, but have dropped when placed in certain positions.

Last week, they thought they'd lost her on Tuesday night. She seemed to have improved by the next day. Thursday, her 02 sat dropped to 19. I was told it stayed that low for about 30 minutes. The doctor told her husband that "she was basically dead and he could give a cardboard box the same treatment she was getting & it would make the machines have the same readings, looking normal". Around 2 a.m., an infectious disease specialist came in, changed some of her treatment & she's been given a better percentage of surviving...50/50.

She's had lots of swelling. Her husband said it was about 6 times her normal size. The past couple of days, the swelling has come down somewhat.

The doctor said her blood is now showing no leukemia cells, but we'll have to wait 12 days to see what the bone marrow puts out.

There was some concern about her liver because of what was in her urine. An ultrasound was done and the doc says he's not concerned now.

The doctor said that we won't know for sure about brain damage until she is awake. The pupils are pinpoint from the size described by the husband. He said the doctor said that was a good sign. That could be because of the coma, right? Husband said they tested brain waves...EEG?...and it was OK.

Based on all this info, what do you think are her chances of survival are just making it through the immediate problems? What do you think the chances of having/not having brain damage are?

Thank you for any info that you can give. Even if it is the worst of news, I'd like to know.

BeenThereDoneThat74, MSN, RN · Jun 4, 2004

I'm so sorry to hear how critical she is. It's such a tough situation. It's hard to conceptualize that this is happening to your friend. I must admit, at times I tend to forget who these people are, and that they are someones mother, child, friend, or sister, and how they were once normal, regular healthy people. I recently lost an uncle (actually really close friend's father, who I've known my entire life). I was there when the ambulance took him away, and in the ER with his wife and children. When I saw the ER crew assume his care, they seemed so indifferent towards him, and the family. I wanted to cry and yell at them at the same time. I know they had to do their job, but I know in Onc., it's a different environment. I think I'm babbling, but what I'm saying is, I hope they're treating her with dignity. And I think this experience has made me more sensitive to the emotional needs of family. These aren't just patients, they are people. It's so important to remember.

Whatever happens, make sure her husband is well informed of what is going on, and what rights to decision making he has. Cancer is a funny (well not really) thing; it's very unpredictible. Keep praying, if you believe in a higher being. :)