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75 year old father just diagnosed with AML

Posted by adkins @adkins, May 4 8:00pm

My father 75 year old father, Greg, was diagnosed with AML yesterday at the VA Hospital in Madison. The results for his genetic testing are not yet in, but the doctor advised us the best case scenario is 18 months with chemotherapy and only 2 months otherwise. My father has been very healthy his entire life; however, this past winter he started feeling extremely tired, began having pain in his joints, and looked extremely pale. He had his first blood infusion on Thursday and is going to start chemotherapy on May 13th. Most, if not all, of the research I am reading says my dad is not a candidate for a stem cell transplant, which seems to give patients the best opportunity to beat this horrible disease. I am heartbroken and lost and any suggestions or experiences anyone is willing to share to help me better help my dad would be much appreciated. Thanks Ryan.

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janetlen | @janetlen | May 11 9:16am

Ryan: It must be a relief for your family to know the path forward. I will pray for you all. I hope your dad responds favorably to the meds. As a 2 tour Viet Nam Vet he has overcome much in his life; he has the fighting spirit to win this battle. It is encouraging that his VA doc is truthful and willing to give him a referral to UW.

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1 reply
adkins | @adkins | May 11 7:55pm
In reply to @loribmt "Good morning, Ryan. I’d been wondering how your dad’s treatment plan was developing. I think the..." + (show)
@loribmt

Good morning, Ryan. I’d been wondering how your dad’s treatment plan was developing. I think the last time we spoke Greg was waiting for the genetic report. He has the same acquired FLT3 mutation that set my journey into motion. I added 2 more mutations just to keep my doctor’s on their toes. LOL
FLT3 can be a challenging mutation to deal with however, as your dad’s doctor mentioned, there is an abrogating drug targeted to the FLT3 mutation that works well. It was also added to my treatment plan.

The first step is to knock down the cancer cells. So it’s important for Greg to begin his chemo program to stop the proliferation of the blasts. The meds he will be receiving have a good track record in helping get the disease under control. I think because of his age the chemo is scaled back a little to a less aggressive form that’s more tolerated by the body. As our bodies age, they don’t process drugs as well through the liver and kidneys. I was 10 years younger than your dad at the start of my treatment and was admitted to the hospital for 5 weeks in the beginning. My induction chemo and subsequent sessions were as inpatient with Cytarabine and Idarubicin infusions for 7 days in the hospital the first time and then just Cytarabine every 28 days for 3 months. I’ll admit it was pretty brutal. Now, thankfully there are meds such as Venetoclax and Vidaza that are much better tolerated but still effective and don’t require a lengthy hospital stay.

The abrogating drug is Midostaurin (Rydapt). I took it for 21 days following each chemo round, tolerated it well and was so grateful that the drug was available. It was a newer drug then and getting approval from Medicare took a call from my doctor.

As you probably figured out already, I’m all about information. 😉 So I found a good article for you about the FLT3 mutation which mentions Midostaurin and it’s mechanism for treating this mutation.

https://www.healthline.com/health/aml/flt3-mutation#symptoms

Your dad will feel some changes coming up in the next couple of weeks as the chemo starts working. Fatigue is normal (and frustrating for active people!) Because his immune system is seriously compromised it’s really important that he avoids exposure to infections and illness. Masking is a good idea around people in public settings. Think “covid training”…the rules still apply. Also, no gardening because of the risk of exposure to fungal infections.
Give your dad my best wishes as he starts his treatments! He’s got this! Keep me updated please. Hugs…

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Hi Lori,

As always, thanks for the great information and words of encouragement. I will give my father your best wishes, and I will definitely keep you updated about his journey. Please take care of yourself, and I will talk with you soon.

Ryan

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adkins | @adkins | May 12 8:06pm
In reply to @janetlen "Ryan: It must be a relief for your family to know the path forward. I will..." + (show)
@janetlen

Ryan: It must be a relief for your family to know the path forward. I will pray for you all. I hope your dad responds favorably to the meds. As a 2 tour Viet Nam Vet he has overcome much in his life; he has the fighting spirit to win this battle. It is encouraging that his VA doc is truthful and willing to give him a referral to UW.

Jump to this post

Hi Janetlen,

Thank you for your prayers for my father. We will take all the prayers and positive energy we can get for him!

Take care,

Ryan

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adkins | @adkins | May 17 8:10am

Good morning Lori,
So my father started chemo on Monday. He took his pills in the morning and got his shot at around 1pm. Everything went well until around 9pm. He started getting tremors and quickly spiked a fever of a little over 103 degrees. My mom and sister ran him back to the VA, and he was admitted. They did a bunch of tests but couldn't pinpoint any issues, so they said it was some type of infection. On Tuesday morning he was basically back to normal; however, they decided to discontinue chemo until yesterday (Thursday). Again, he took his pills in the morning and received his shot at around 1pm. This time, he did well until around 6pm and then the same thing as Monday occurred. Any thoughts?

Thanks,
Ryan

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 17 8:53am
In reply to @adkins "Good morning Lori, So my father started chemo on Monday. He took his pills in the..." + (show)
@adkins

Good morning Lori,
So my father started chemo on Monday. He took his pills in the morning and got his shot at around 1pm. Everything went well until around 9pm. He started getting tremors and quickly spiked a fever of a little over 103 degrees. My mom and sister ran him back to the VA, and he was admitted. They did a bunch of tests but couldn't pinpoint any issues, so they said it was some type of infection. On Tuesday morning he was basically back to normal; however, they decided to discontinue chemo until yesterday (Thursday). Again, he took his pills in the morning and received his shot at around 1pm. This time, he did well until around 6pm and then the same thing as Monday occurred. Any thoughts?

Thanks,
Ryan

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Hi Ryan, Since your dad had the same reaction twice it may be a reaction to the chemo. The first time could have been coincidental to taking the chemo but could have been caused by an underlying infection. But twice, seems a little less of a coincidence. Usually chemo doesn’t cause a fever though so I can understand why his doctors suspected an infection.
This is why…your dad has AML which is drastically depleting his immune system of healthy cells. Even though he may have an abundance of white blood cells right now, they’re immature blasts and unable to protect him from infection. So your dad is very prone to infections not just from viral infections like flu or Covid, but bacterial and fungal infections. To show you how critical this condition can be, when I was first diagnosed I was immediately admitted to the hospital for 5 weeks and closely monitored for infections. I was administered several broad spectrum IV antibiotics, an antifungal and anti viral meds even before I began chemo a week later.
Your dad will need to be extra cautious to avoid cuts, exposure to illnesses from people and food and no gardening! He should avoid things like deli meats, craft cheeses that aren’t pasteurized, buffet tables…you get the idea. I was told that I no longer had a ‘5 second rule’…consider anything that hits the floor to be contaminated and potentially life threatening. 😉

Once Greg is through this first round, about a week or so later he’ll reach another really low point in his blood numbers referred to as the nadir period or neutropenia. He’ll feel extra fatigue and might appear mentally and emotionally low too. That should reverse itself within a few days as healthy blood cells begin to regenerate. I actually felt better while on chemo because it was killing the cancer cells.

Sorry, I digressed…what did the doctor say the 2nd time the reaction happened? Does your dad’s fever and tremors go away after a short time or did he have to return to the VA?

REPLY
1 reply
adkins | @adkins | May 17 10:17am
In reply to @loribmt "Hi Ryan, Since your dad had the same reaction twice it may be a reaction to..." + (show)
@loribmt

Hi Ryan, Since your dad had the same reaction twice it may be a reaction to the chemo. The first time could have been coincidental to taking the chemo but could have been caused by an underlying infection. But twice, seems a little less of a coincidence. Usually chemo doesn’t cause a fever though so I can understand why his doctors suspected an infection.
This is why…your dad has AML which is drastically depleting his immune system of healthy cells. Even though he may have an abundance of white blood cells right now, they’re immature blasts and unable to protect him from infection. So your dad is very prone to infections not just from viral infections like flu or Covid, but bacterial and fungal infections. To show you how critical this condition can be, when I was first diagnosed I was immediately admitted to the hospital for 5 weeks and closely monitored for infections. I was administered several broad spectrum IV antibiotics, an antifungal and anti viral meds even before I began chemo a week later.
Your dad will need to be extra cautious to avoid cuts, exposure to illnesses from people and food and no gardening! He should avoid things like deli meats, craft cheeses that aren’t pasteurized, buffet tables…you get the idea. I was told that I no longer had a ‘5 second rule’…consider anything that hits the floor to be contaminated and potentially life threatening. 😉

Once Greg is through this first round, about a week or so later he’ll reach another really low point in his blood numbers referred to as the nadir period or neutropenia. He’ll feel extra fatigue and might appear mentally and emotionally low too. That should reverse itself within a few days as healthy blood cells begin to regenerate. I actually felt better while on chemo because it was killing the cancer cells.

Sorry, I digressed…what did the doctor say the 2nd time the reaction happened? Does your dad’s fever and tremors go away after a short time or did he have to return to the VA?

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They have kept him at the VA Hospital since Monday night and the original plan was to discharge him tomorrow (Saturday). Still waiting to see what the doctor's have planned for today. It seems like his tremors stop and his fever subsides pretty quickly after they treat him with antibiotics.

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adkins | @adkins | May 29 5:24pm

Hi Lori,

My father was released from the hospital last Thursday after he completed his first round of chemo. The chemo did its job and knocked the cancer cells out; however, as of yesterday, he's not producing any new healthy blood cells. He's been averaging about two blood transfusions a week. Yesterday, his platelets were at 22, and his Hemoglobin was 7.8. He got platelets last week, and his number actually went up. He's lost over 25 pounds, is that normal? They are going to do another bone marrow/bone biopsy on June 5th, and his second round of chemo is scheduled to start on June 10th.

Ryan

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 29 6:00pm
In reply to @adkins "Hi Lori, My father was released from the hospital last Thursday after he completed his first..." + (show)
@adkins

Hi Lori,

My father was released from the hospital last Thursday after he completed his first round of chemo. The chemo did its job and knocked the cancer cells out; however, as of yesterday, he's not producing any new healthy blood cells. He's been averaging about two blood transfusions a week. Yesterday, his platelets were at 22, and his Hemoglobin was 7.8. He got platelets last week, and his number actually went up. He's lost over 25 pounds, is that normal? They are going to do another bone marrow/bone biopsy on June 5th, and his second round of chemo is scheduled to start on June 10th.

Ryan

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Hi Ryan, It is quite normal after chemotherapy for blood numbers to drop dramatically. Chemo kills rapidly developing cells such as cancer cells. Unfortunately it doesn’t discriminate and will also impact the body’s blood cell production…red, white and platelets.
Starting at about 7-10 days after the last day of chemo, there is period referred to as the nadir or neutropenia stage which lasts for several days. All the blood numbers will be low until the marrow is able to start regenerating new cells again. In the meantime there are infusions for platelets and red blood if needed. Your dad finished his round of chemo last Thursday so he may be entering that nadir stage if he isn’t already in it. The body generally recovers just in time for the next round of chemo. Your dad’s doctors will check his blood numbers before his next chemo. Sometimes the next session is delayed until numbers rebound. Also, if his white count doesn’t go up fast enough his doctor may suggest an injection of Nupogen which helps increase the production of white blood cells so that his infection risk is lower.

Losing weight is another ‘normal’ side effect of the cancer itself and the chemo. It can be alarming to lose that much weight so rapidly. I’m not a large person and I lost over 40 pounds the first 5 weeks. It was shocking when I got home and saw myself in the mirror.
If you can encourage your dad to eat…at this point, anything! My dietician of course was trying to push protein rich foods to help prevent muscle mass and provide nutrition. But chemo can really mess with a person’s appetite. So my dietician was pushing anything I could get down with calories. My husband would make me smoothies with Lactaid brand Ice Cream…the salted caramel. 😉. That had fat, calories, carbs…you name it! I couldn’t taste it but it went down well. Having no lactose helped keep my intestines happy. There are also protein shakes and juices on the market that are palatable.

Is your dad nauseated?

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adkins | @adkins | Jun 5 6:26pm

Hi Lori,

Today, we got the last of the genetic testing results from my father's first biopsy a few weeks ago. The Oncologist said he has AML-MRC. Any experience with this?

Thanks,

Ryan

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 6 10:53am
In reply to @adkins "Hi Lori, Today, we got the last of the genetic testing results from my father's first..." + (show)
@adkins

Hi Lori,

Today, we got the last of the genetic testing results from my father's first biopsy a few weeks ago. The Oncologist said he has AML-MRC. Any experience with this?

Thanks,

Ryan

Jump to this post

Hi Ryan, I don’t remember seeing MRC after my AML diagnosis. It translates to Acute Myeloid Leukemia with Myelodysplasia-Related Changes. From what I’m reading this can make the case a little more complex and it’s important to make this discovery early on in order to get the proper treatment.

The National Institute of Health (National Library of Medicine) had this article if you’re interested.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7610263/

Gary’s at one of the best hospitals in the state so they’ll be aware of the diagnosis and treat your dad accordingly. How is he feeling? Is he starting to rebound from the first round of chemo?

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