Acute Myeloid Leukemia

[Snowflakey]

Has anyone had to deal with this before? My Mom was just diagnosed last week after 79 years of not having one medical problem. Never on meds for anything, perfectly healthy. This hit us like a ton of bricks as they are saying 6-18 months....maybe.

She is starting chemo injections next Monday. One a day for 7 days. This will continue each month. She will also begin an oral pill as well.

Appreciate any help. Thank you.

 

[TwoMisfits]

I don't have that type of leukemia, but we've now had 2 blood cancers in the family, so things to know...

Finding a specialist for your mom's type of blood cancer is important. You don't just want a regular oncologist or a hemotologist who hasn't treated this type in years. All blood cancers have had some amazing research done the last few years and new treatments literally come out by the month, so you want someone up on new best practices.

Also, typing the disease for specific chromosomal abnormalities is important for treatment. Hopefully, that's been done, and you know if your mom has this chromosomal deletion or that translation, etc. I would make sure that's been done before chemo starts, especially if this was not an "emergency" admission. It shouldn't take much time at all, and it's worth it to make sure she's being treated with the best med for her type right now.

Other than that, I wish your mom and your family the best and will send my thoughts and prayers your way. There's no certainty for time with blood cancers, so stay positive if at all possible if only to keep mom's stress low (which can only help)...

 

[Dan Murphy]

I have no experience with this, Snowflakey, but wishing your mom the best. Prayers and good wishes for her, you and your family. 's

 

[mefordis]

Has anyone had to deal with this before? My Mom was just diagnosed last week after 79 years of not having one medical problem. Never on meds for anything, perfectly healthy. This hit us like a ton of bricks as they are saying 6-18 months....maybe.

She is starting chemo injections next Monday. One a day for 7 days. This will continue each month. She will also begin an oral pill as well.

Appreciate any help. Thank you.

I'm hearing about a lot of cases of blood cancer lately. Two people I know and a few others who I do not know personally. I'm so sorry.

 

[kcool]

My niece (early 20’s) had this. She was in the Navy at the time. I am not an expert by any means, just know what she went though. She did chemo and then had a stem cell transplant. She is 5 years out from the transplant and doing really well. Thoughts out to your mom and your family.

 

[Pea-n-Me]

Things start to happen as people get older, unfortunately. From an evolution standpoint, our bodies weren’t meant to live as long as they are now. That said, I wish the best for your Mom and your family. Find the best medical care you can.

 

[BlueStarryHat]

I'm sending out good vibes to your Mom, you, and all your loved ones.

 

[Kitty 34]

Sending positive thoughts to your Mom and many hugs.

 

[fla4fun]

My father was diagnosed in early March and passed away in mid April the same year. He was also 79. He was diagnosed at the Cleveland Clinic, and received his initial chemo there. He stayed there until his counts looked good and then he was flown back to Florida by air ambulance and was admitted to the hospital here where he lived. He was getting ready to do another round of chemo when his counts went through the roof and he passed. I do believe his was caught late, since we had all been dealing with my mom passing the prior November and he kind of brushed things aside to deal with later. I don’t know if he would have been more responsive to the chemo if he had been diagnosed earlier.

I know that’s probably not what you wanted to hear, but remember, every case will be different. It’s a horrible disease that I would not wish on anyone. Sending you lots of good wishes .

 

[Snowflakey]

My father was diagnosed in early March and passed away in mid April the same year. He was also 79. He was diagnosed at the Cleveland Clinic, and received his initial chemo there. He stayed there until his counts looked good and then he was flown back to Florida by air ambulance and was admitted to the hospital here where he lived. He was getting ready to do another round of chemo when his counts went through the roof and he passed. I do believe his was caught late, since we had all been dealing with my mom passing the prior November and he kind of brushed things aside to deal with later. I don’t know if he would have been more responsive to the chemo if he had been diagnosed earlier.

I know that’s probably not what you wanted to hear, but remember, every case will be different. It’s a horrible disease that I would not wish on anyone. Sending you lots of good wishes .

I'm so sorry about your dad. I do know they caught this very early. She was perfectly healthy until July 2nd when she started a low fever and her legs swelled. That was the beginning of all of this....

 

[Snowflakey]

I don't have that type of leukemia, but we've now had 2 blood cancers in the family, so things to know...

Finding a specialist for your mom's type of blood cancer is important. You don't just want a regular oncologist or a hemotologist who hasn't treated this type in years. All blood cancers have had some amazing research done the last few years and new treatments literally come out by the month, so you want someone up on new best practices.

Also, typing the disease for specific chromosomal abnormalities is important for treatment. Hopefully, that's been done, and you know if your mom has this chromosomal deletion or that translation, etc. I would make sure that's been done before chemo starts, especially if this was not an "emergency" admission. It shouldn't take much time at all, and it's worth it to make sure she's being treated with the best med for her type right now.

Other than that, I wish your mom and your family the best and will send my thoughts and prayers your way. There's no certainty for time with blood cancers, so stay positive if at all possible if only to keep mom's stress low (which can only help)...

So sorry you are dealing with blood cancers. You are in my prayers.

We are in a small State but I do know her doctor is known as "the best" so that gives me comfort. The injections and oral pill they are starting her on are fairly new from what he said.

We are awaiting the results of the chromosomal test. Should be back any day. Her doctor said from those results he could very well be giving us some "good news" or some "worse news". Praying for good......but wasn't really sure what this all means about this test....

 

[TwoMisfits]

So sorry you are dealing with blood cancers. You are in my prayers.

We are in a small State but I do know her doctor is known as "the best" so that gives me comfort. The injections and oral pill they are starting her on are fairly new from what he said.

We are awaiting the results of the chromosomal test. Should be back any day. Her doctor said from those results he could very well be giving us some "good news" or some "worse news". Praying for good......but wasn't really sure what this all means about this test....

Different chromosonal abnormalities lean to better or worse prognoses, even over and above age, current health state, advancement of disease, etc. But, as everyone with my type of leukemia knows, prognosis is not certainty, so even if it comes back "not great", I wouldn't dwell on that. Matching the treatment to the chromosomal abnormalities is the biggest key (and the fact the doc ran the test already before treatment is a great sign he/she knows what they are doing).

For the record, I have the "worst" markers for my leukemia type and when I got diagnosed, google said my average life expectancy would be 2-5 years. I'm in year 2 (13 months in), and I'm nowhere close to treatment yet (google also said my median time to treatment was 12 months at my age and type) and in "good" health (which I now put as my top priority - I have a laser-like focus on being consistent on food, sleep, exercise, stress, b/c that helps my immune system, and anything which babies my immune system probably also helps keeps my cancer slower in its progression (since mine is lymphocytic)). So, both google and the "prognosis history" for treatment should be looked at, but then ignored.

 

[mom2rtk]

Prayers to you, your mom and your family.

 

[Snowflakey]

Different chromosonal abnormalities lean to better or worse prognoses, even over and above age, current health state, advancement of disease, etc. But, as everyone with my type of leukemia knows, prognosis is not certainty, so even if it comes back "not great", I wouldn't dwell on that. Matching the treatment to the chromosomal abnormalities is the biggest key (and the fact the doc ran the test already before treatment is a great sign he/she knows what they are doing).

For the record, I have the "worst" markers for my leukemia type and when I got diagnosed, google said my average life expectancy would be 2-5 years. I'm in year 2 (13 months in), and I'm nowhere close to treatment yet (google also said my median time to treatment was 12 months at my age and type) and in "good" health (which I now put as my top priority - I have a laser-like focus on being consistent on food, sleep, exercise, stress, b/c that helps my immune system, and anything which babies my immune system probably also helps keeps my cancer slower in its progression (since mine is lymphocytic)). So, both google and the "prognosis history" for treatment should be looked at, but then ignored.

You don't know how much I appreciate all you've said. I am keeping you in my prayers for continued strength and fight. You are doing a great job!

Anything else you can think of please send my way.

I do believe the doc we have really does know what he is doing with regards to this.

 

[RUDisney]

I don't have that type of leukemia, but we've now had 2 blood cancers in the family, so things to know...

Finding a specialist for your mom's type of blood cancer is important. You don't just want a regular oncologist or a hemotologist who hasn't treated this type in years. All blood cancers have had some amazing research done the last few years and new treatments literally come out by the month, so you want someone up on new best practices.

Also, typing the disease for specific chromosomal abnormalities is important for treatment. Hopefully, that's been done, and you know if your mom has this chromosomal deletion or that translation, etc. I would make sure that's been done before chemo starts, especially if this was not an "emergency" admission. It shouldn't take much time at all, and it's worth it to make sure she's being treated with the best med for her type right now.

Other than that, I wish your mom and your family the best and will send my thoughts and prayers your way. There's no certainty for time with blood cancers, so stay positive if at all possible if only to keep mom's stress low (which can only help)...

Everything @TwoMisfits has said is true... including in the last post.

My DS had ALL and is 2.5 years out. We took him from Scranton to Philadelphia for treatment and I have a friend who was diagnosed at the same time who stayed local for treatments. They waited 2 weeks before starting my DS on treatments as they determined if he had the Philadelphia Chromosome. It was named that because it was discovered by the hospital that was treating him. My friend was never tested for this chromosome and her dr started her treatment right away. She had a much harder go of it than my DS, although both of them have survived.

Treatment can be done at home, but traveling to check with a specialist from a teaching hospital known for researching and treating leukemia is a very good idea, if it's possible.

My thoughts and prayers are with you and your Mom, @Snowflakey. A positive outlook is the key to any chance of a successful treatment.

So much has been done to successfully treat leukemia in recent years. There is no reason that with an early diagnosis and treatment your Mom can't be a success story.

Prayers for you, too, @TwoMisfits.

 

[Snowflakey]

Everything @TwoMisfits has said is true... including in the last post.

My DS had ALL and is 2.5 years out. We took him from Scranton to Philadelphia for treatment and I have a friend who was diagnosed at the same time who stayed local for treatments. They waited 2 weeks before starting my DS on treatments as they determined if he had the Philadelphia Chromosome. It was named that because it was discovered by the hospital that was treating him. My friend was never tested for this chromosome and her dr started her treatment right away. She had a much harder go of it than my DS, although both of them have survived.

Treatment can be done at home, but traveling to check with a specialist from a teaching hospital known for researching and treating leukemia is a very good idea, if it's possible.

My thoughts and prayers are with you and your Mom, @Snowflakey. A positive outlook is the key to any chance of a successful treatment.

So much has been done to successfully treat leukemia in recent years. There is no reason that with an early diagnosis and treatment your Mom can't be a success story.

Prayers for you, too, @TwoMisfits.

Thank you for this. It gives me hope.

So should I ask Mom's doctor if they are looking for this Philadelphia Chromosome? It will be 2 weeks since they gave the news before they start Mom on the chemo injections as they are waiting for the chromosome results.

What treatment did your DS start with?

 

[RUDisney]

Thank you for this. It gives me hope.

So should I ask Mom's doctor if they are looking for this Philadelphia Chromosome? It will be 2 weeks since they gave the news before they start Mom on the chemo injections as they are waiting for the chromosome results.

What treatment did your DS start with?

My DS had ALL, not AML like your Mom. The Philadelphia chromosome is linked to ALL.

Ask the doctor if chromosome tests were done and if so, what the results are. If he says that he didn’t check for that, ask him why not and to do that.

You want the right treatment protocol to be followed to give the best results. Chromosome testing will ensure that will happen.

Your Mom will be very immunosuppressed (neutropenic) during treatment. During covid, everyone will have to be very careful around her.

But, attitude also plays a major role. Keep faith that she will conquer this roadblock in her life.

 

[slo]

Has anyone had to deal with this before? My Mom was just diagnosed last week after 79 years of not having one medical problem. Never on meds for anything, perfectly healthy. This hit us like a ton of bricks as they are saying 6-18 months....maybe.

She is starting chemo injections next Monday. One a day for 7 days. This will continue each month. She will also begin an oral pill as well.

Appreciate any help. Thank you.

I’m so sorry to hear this.
I have no advice, but I do want to say prayers for her and you all

 

[Snowflakey]

My DS had ALL, not AML like your Mom. The Philadelphia chromosome is linked to ALL.

Ask the doctor if chromosome tests were done and if so, what the results are. If he says that he didn’t check for that, ask him why not and to do that.

You want the right treatment protocol to be followed to give the best results. Chromosome testing will ensure that will happen.

Your Mom will be very immunosuppressed (neutropenic) during treatment. During covid, everyone will have to be very careful around her.

But, attitude also plays a major role. Keep faith that she will conquer this roadblock in her life.

The doctor did do this test. Results should be in this week however he is on vacation. Mom returns back to the hospital on monday to begin treatment so I'm positive I will know the results then. I will make sure I do!

 

[RUDisney]

@Snowflakey, please DM me if you need any pep talks. I will even provide my phone number to you if you'd like to talk.

Support is the key to all of this, too. Encourage your Mom to take an antidepressant if she needs one and to talk to a counselor to make herself feel better, mentally.

Medical marijuana is legal in a bunch of states where it isn't fully legal yet. This was the only thing that helped my DS get through the nausea. I've never used it myself, but I've bought it for my DS when it helped him... before it was legal in PA. My sister would never take it. She suffered through the nausea during chemo... but we, like your mother, were raised during times when pot was taboo. Medically, it helps.