My 92 year old mother was recently diagnosed with AML. She is undergoing chemo this week in the hospital. Decitibine IV x 5 days and Venetoclax orally X 7 days. Do you know of other elderly patients that have undergone treatment? And what can she expect for quality of life? So far she is tolerating it very well. She has finished day 3. She is "otherwise" a very strong and healthy 92 year old. She was still downhill skiing at 90.
Wow, @kristenwhittle, Your mom is a force!! She’s in the hospital where she’ll be watched closely while undergoing the chemo treatments. I’m so happy to hear she’s giving this a go…because to do nothing would not have a positive outcome. AML, once started, progresses rapidly. So for your mom, this is an opportunity to get into remission!
You might find this discussion by @ccleschats encouraging with her accounting of her 75 year old husband with AML on the same meds as your mom. https://connect.mayoclinic.org/discussion/acute-myeloid-leukemia-aml-treatment-of-75-year-old-is-working/
It’s early in the game yet for reactions, those tend to come in the next couple of weeks with fatigue, possible nausea and a little weakness.
These are normal side effects as the treatment works to destroy the quickly replicating cells called blasts. They’re the immature white blood cells which are overcrowding her red blood cells at this point. She will go through a very low period where all her blood counts are down. But they will regenerate and she should start feeling stronger after that. It’s important to avoid illness at this time. She may be given antibiotics as a precaution to avoid infections.
The Venetoclax is more of a targeted drug to keep the cancer cells from reproducing.
Your mom, with her health history and obvious spirit of endurance should do well with treatment. Encourage her to keep active if she can. I walked miles daily in the hospital bed tower while pushing my chemo IV with me. It worked to keep me healthy and energized.
Say hi to your mom for me. I’m so encouraged by her story! Keep me posted, ok?
Thank you Lori for such a quick response. I am so glad that your transplant was successful! You sure went through a lot! We received the diagnosis last week. Unfortunately, she started having profuse night sweats in November but was told it was due to age; then in April she became very sick. That started a long process of different blood tests, x-rays, MRI’s and CT scans, with no diagnosis. She wasn’t able to be seen by the oncologist until June - then didn’t have the bone marrow biopsy until July 31. I’m hoping we aren’t too progressed in the leukemia for treatment to help. :0 Moms original response was to opt for transfusions for palliative care, as taking the chemo drug scared her. This information may help her decide to give it a try. Thank you!!
for pegsue23: Regarding chemo versus palliative care, why not give the chemo a try and see what the results are? Your mother can always stop it if she wants to. Try not to let pre-conceived notions of what chemo will be like get in the way of trying it. Her doctor can tell her what to expect.
For example, I had Cytarabine, and then high-dose Cytarabine. I was scared that taking 30 times more would result in side effects 30 times worse, but it does not work that way. In addition, there are many good drugs to control side effects like nausea these days.
I don't know her situation, but it might reassure her if she knew that she would have the support she will need with practical matters.
My 92 year old mother was recently diagnosed with AML. She is undergoing chemo this week in the hospital. Decitibine IV x 5 days and Venetoclax orally X 7 days. Do you know of other elderly patients that have undergone treatment? And what can she expect for quality of life? So far she is tolerating it very well. She has finished day 3. She is "otherwise" a very strong and healthy 92 year old. She was still downhill skiing at 90.
Without knowing the particulars of your situation, no one can tell you what to expect. If you have questions, talk to your doctor.
I once asked my doctor what I could do to maximize the chances of successful treatment. He suggested that I make sure to keep all the appointments; take the medication; and get adequate nutrition.
To that I would add:
Reach out to everyone you know for help.
Do what your doctor wants you to do.
Hang on to hope.
Don't get too hung up on statistics. Statistics apply to groups, not individual people. There are many subtleties in probability and statistics, such as properly applying the idea of conditional probabilities.
Your doctor will have to deal with your individual case. He or she will have to deal with particular problems as they arise.
I have some practical suggestions. Bring an extension cord to the hospital if you want to charge a phone. Bring a notebook and pen with you so that you can make notes about what to ask when you see your doctor. When undergoing treatment, just focus on the immediate task. Narrowing your focus of attention can help. If you need to think at a higher level and make difficult decisions and do planning, your rational mind and your emotional mind might be out of sync. To deal with that I used a "pretend and act" strategy. That is I pretended that I was going to do what my rational mind said that I needed to do, and went ahead with making the practical preparations to do it even if my emotional mind was not quite there yet. By the time I got done making the preparations, my emotional mind was caught up and I could go forward.
I will attempt to attach a PDF file that contains an account of my own experience with AML and its treatment. You might want to go straight to the appendix that lists lessons learned. Even better, I think, would be for someone who cares about you but has more emotional distance from the immediate problem to do the reading for you, and glean whatever can be gleaned from my own experience that could apply to your situation.
Thank you Lori for such a quick response. I am so glad that your transplant was successful! You sure went through a lot! We received the diagnosis last week. Unfortunately, she started having profuse night sweats in November but was told it was due to age; then in April she became very sick. That started a long process of different blood tests, x-rays, MRI’s and CT scans, with no diagnosis. She wasn’t able to be seen by the oncologist until June - then didn’t have the bone marrow biopsy until July 31. I’m hoping we aren’t too progressed in the leukemia for treatment to help. :0 Moms original response was to opt for transfusions for palliative care, as taking the chemo drug scared her. This information may help her decide to give it a try. Thank you!!
He @pegsue23 It’s really sad that your mother’s night sweats in November were dismissed as age related and that her diagnosis took so long. Not that it would have changed the diagnosis but it would have allowed her to be treated earlier.
I’d really encourage your mom to at least try the treatments. The Enasidenib has such positive outcomes for AML patients with the mutation your mom has. It could buy her precious time with her family.
I know just the word Chemotherapy can fill a person with dread. From my understanding, your mom isn’t being given the standard 7+3 induction chemo where she’d be in the hospital for 5 weeks or so. That’s a rough regimen. From what you mentioned, she’d only be receiving the Enasidenib. That’s a small, 50mg tablet taken once or twice daily with or without food. From my experience with the similar drug I had to take, I felt better with a light base of food in my tummy.
Just so that you’re aware of what’s ahead…if your mom opts not to take any treatment, then palliative care is next. But it would be only a short time as she’d be needing hospice care rather quickly. As AML progresses in later stages, it gains speed. What’s left of any red/white blood cells and platelets will be crowded out by the rapidly proliferating blast cells (immature and ineffective white blood cells). As that happens, she’ll be needing more blood and platelet transfusions, becoming increasingly fatigued.
I think you mentioned your mom is already in a neutropenic stage and without intervention that doesn’t reverse at this point. The Enasidenib could possible slow or stop the progression of the cancerous cells so that her marrow can start rebuilding with healthy blood cells again.
Truly, I know what an emotional time this is. So I hope you, your mom and family can have some meaningful and heartfelt conversations. This is a personal decision on her part but at 84, she could have some quality time left.
Please let me know what your mom decides and if I can help in any way. Hugs
Welcome to Connect @pegsue23. My heart goes out to you and your mom over her diagnosis with Acute Myeloid Leukemia. With or without the genetic mutation AML can be a tricky blood cancer to fight. I had AML with 3 mutations four years ago and it required months of chemo and ultimately a bone marrow transplant. I was 65 at the time and it was quite the adventure, to put it mildly.
As we age, we have less tolerance for aggressive treatments. At 84, your mom may be in the age group where strong chemotherapy is not advisable. Without treatment, sadly, this type of leukemia will continue to progress steadily and sometimes rapidly.
Enasidenib is a targeted therapy for patients with AML who have an IDH2 gene mutation. It helps to slow the progression by blocking several enzymes that promote cell growth of the cancer cells. It can, in some cases, help patients reach remission. Here is the FDA article on the drug: https://www.fda.gov/news-events/press-announcements/fda-approves-new-targeted-treatment-relapsed-or-refractory-acute-myeloid-leukemia
While it may have some side effects such as nausea, it would be worth a try. I truly understand quality of life vs quantity. But if untreated, there would not be much time remaining. Your mom can give it a try and then stop if there are issues. It’s generally one capsule per day. With or without food. I’d suggest with food.
I had a targeted med similar to this which I took in the weeks between chemo rounds. Believe me, I had qualms too. But I actually had no side effects and the drug did its job, with one of the mutations I had, to keep it from replicating.
We have another member who is 83 and taking Enasidenib for another type of blood cancer. Maybe @deemcrae can share her experience with you and your mom.
Thank you Lori for such a quick response. I am so glad that your transplant was successful! You sure went through a lot! We received the diagnosis last week. Unfortunately, she started having profuse night sweats in November but was told it was due to age; then in April she became very sick. That started a long process of different blood tests, x-rays, MRI’s and CT scans, with no diagnosis. She wasn’t able to be seen by the oncologist until June - then didn’t have the bone marrow biopsy until July 31. I’m hoping we aren’t too progressed in the leukemia for treatment to help. :0 Moms original response was to opt for transfusions for palliative care, as taking the chemo drug scared her. This information may help her decide to give it a try. Thank you!!
Hello… my almost 84 year old mom was just diagnosed with AML IDH2 mutation. We are heartbroken with the research we’ve found so far. Has anyone had experience with the drug Enasidenib? She has neutropenia with also very low white & red blood cell counts. She is worried about the side effects of treatment and trying to process quality of life vs quantity. Any suggestions in dealing with this at this age?
Welcome to Connect @pegsue23. My heart goes out to you and your mom over her diagnosis with Acute Myeloid Leukemia. With or without the genetic mutation AML can be a tricky blood cancer to fight. I had AML with 3 mutations four years ago and it required months of chemo and ultimately a bone marrow transplant. I was 65 at the time and it was quite the adventure, to put it mildly.
As we age, we have less tolerance for aggressive treatments. At 84, your mom may be in the age group where strong chemotherapy is not advisable. Without treatment, sadly, this type of leukemia will continue to progress steadily and sometimes rapidly.
Enasidenib is a targeted therapy for patients with AML who have an IDH2 gene mutation. It helps to slow the progression by blocking several enzymes that promote cell growth of the cancer cells. It can, in some cases, help patients reach remission. Here is the FDA article on the drug: https://www.fda.gov/news-events/press-announcements/fda-approves-new-targeted-treatment-relapsed-or-refractory-acute-myeloid-leukemia
While it may have some side effects such as nausea, it would be worth a try. I truly understand quality of life vs quantity. But if untreated, there would not be much time remaining. Your mom can give it a try and then stop if there are issues. It’s generally one capsule per day. With or without food. I’d suggest with food.
I had a targeted med similar to this which I took in the weeks between chemo rounds. Believe me, I had qualms too. But I actually had no side effects and the drug did its job, with one of the mutations I had, to keep it from replicating.
We have another member who is 83 and taking Enasidenib for another type of blood cancer. Maybe @deemcrae can share her experience with you and your mom.
Hello… my almost 84 year old mom was just diagnosed with AML IDH2 mutation. We are heartbroken with the research we’ve found so far. Has anyone had experience with the drug Enasidenib? She has neutropenia with also very low white & red blood cell counts. She is worried about the side effects of treatment and trying to process quality of life vs quantity. Any suggestions in dealing with this at this age?
My donor was found in Germany also - a young college student who registered to donate when he was 16 and a family friend was needing a stem cell donor. I became the beneficiary of this man’s generosity. He will be coming to the US for the third time with his parents to visit us.
It’s wonderful you’ve been able to meet with your donor! That must have been an incredible first meeting!! 💕
My donor was a 20 year old male from the US and after repeated attempts to initiate contact he chooses to remain anonymous. I’d really love to meet this young man who would be 24 now. I sent 2 thank you notes the first year. Then at my 2nd and 3rd anniversaries I sent requests for contact to Be the Match to see if my donor would reciprocate. Nope… It’s not like I want to be another old auntie or granny in his life telling him to make good decisions😅. I just want to let him know how his gift has impacted my life, along with family and friends.
Quite frankly I would not be alive right now if not for his generosity. He owes me nothing but I owe him everything!
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
My donor was found in Germany also - a young college student who registered to donate when he was 16 and a family friend was needing a stem cell donor. I became the beneficiary of this man’s generosity. He will be coming to the US for the third time with his parents to visit us.
Connect
Connect
Like
Helpful
Hug
Wow, @kristenwhittle, Your mom is a force!! She’s in the hospital where she’ll be watched closely while undergoing the chemo treatments. I’m so happy to hear she’s giving this a go…because to do nothing would not have a positive outcome. AML, once started, progresses rapidly. So for your mom, this is an opportunity to get into remission!
You might find this discussion by @ccleschats encouraging with her accounting of her 75 year old husband with AML on the same meds as your mom.
https://connect.mayoclinic.org/discussion/acute-myeloid-leukemia-aml-treatment-of-75-year-old-is-working/
It’s early in the game yet for reactions, those tend to come in the next couple of weeks with fatigue, possible nausea and a little weakness.
These are normal side effects as the treatment works to destroy the quickly replicating cells called blasts. They’re the immature white blood cells which are overcrowding her red blood cells at this point. She will go through a very low period where all her blood counts are down. But they will regenerate and she should start feeling stronger after that. It’s important to avoid illness at this time. She may be given antibiotics as a precaution to avoid infections.
The Venetoclax is more of a targeted drug to keep the cancer cells from reproducing.
Your mom, with her health history and obvious spirit of endurance should do well with treatment. Encourage her to keep active if she can. I walked miles daily in the hospital bed tower while pushing my chemo IV with me. It worked to keep me healthy and energized.
Say hi to your mom for me. I’m so encouraged by her story! Keep me posted, ok?
-
Like -
Helpful -
Hug
1 Reactionfor pegsue23: Regarding chemo versus palliative care, why not give the chemo a try and see what the results are? Your mother can always stop it if she wants to. Try not to let pre-conceived notions of what chemo will be like get in the way of trying it. Her doctor can tell her what to expect.
For example, I had Cytarabine, and then high-dose Cytarabine. I was scared that taking 30 times more would result in side effects 30 times worse, but it does not work that way. In addition, there are many good drugs to control side effects like nausea these days.
I don't know her situation, but it might reassure her if she knew that she would have the support she will need with practical matters.
-
Like -
Helpful -
Hug
1 ReactionMy 92 year old mother was recently diagnosed with AML. She is undergoing chemo this week in the hospital. Decitibine IV x 5 days and Venetoclax orally X 7 days. Do you know of other elderly patients that have undergone treatment? And what can she expect for quality of life? So far she is tolerating it very well. She has finished day 3. She is "otherwise" a very strong and healthy 92 year old. She was still downhill skiing at 90.
-
Like -
Helpful -
Hug
3 ReactionsWithout knowing the particulars of your situation, no one can tell you what to expect. If you have questions, talk to your doctor.
I once asked my doctor what I could do to maximize the chances of successful treatment. He suggested that I make sure to keep all the appointments; take the medication; and get adequate nutrition.
To that I would add:
Reach out to everyone you know for help.
Do what your doctor wants you to do.
Hang on to hope.
Don't get too hung up on statistics. Statistics apply to groups, not individual people. There are many subtleties in probability and statistics, such as properly applying the idea of conditional probabilities.
Your doctor will have to deal with your individual case. He or she will have to deal with particular problems as they arise.
I have some practical suggestions. Bring an extension cord to the hospital if you want to charge a phone. Bring a notebook and pen with you so that you can make notes about what to ask when you see your doctor. When undergoing treatment, just focus on the immediate task. Narrowing your focus of attention can help. If you need to think at a higher level and make difficult decisions and do planning, your rational mind and your emotional mind might be out of sync. To deal with that I used a "pretend and act" strategy. That is I pretended that I was going to do what my rational mind said that I needed to do, and went ahead with making the practical preparations to do it even if my emotional mind was not quite there yet. By the time I got done making the preparations, my emotional mind was caught up and I could go forward.
I will attempt to attach a PDF file that contains an account of my own experience with AML and its treatment. You might want to go straight to the appendix that lists lessons learned. Even better, I think, would be for someone who cares about you but has more emotional distance from the immediate problem to do the reading for you, and glean whatever can be gleaned from my own experience that could apply to your situation.
6 x 9 in - AML Adventure v1 (6-x-9-in-AML-Adventure-v1.5.pdf)
He @pegsue23 It’s really sad that your mother’s night sweats in November were dismissed as age related and that her diagnosis took so long. Not that it would have changed the diagnosis but it would have allowed her to be treated earlier.
I’d really encourage your mom to at least try the treatments. The Enasidenib has such positive outcomes for AML patients with the mutation your mom has. It could buy her precious time with her family.
I know just the word Chemotherapy can fill a person with dread. From my understanding, your mom isn’t being given the standard 7+3 induction chemo where she’d be in the hospital for 5 weeks or so. That’s a rough regimen. From what you mentioned, she’d only be receiving the Enasidenib. That’s a small, 50mg tablet taken once or twice daily with or without food. From my experience with the similar drug I had to take, I felt better with a light base of food in my tummy.
Just so that you’re aware of what’s ahead…if your mom opts not to take any treatment, then palliative care is next. But it would be only a short time as she’d be needing hospice care rather quickly. As AML progresses in later stages, it gains speed. What’s left of any red/white blood cells and platelets will be crowded out by the rapidly proliferating blast cells (immature and ineffective white blood cells). As that happens, she’ll be needing more blood and platelet transfusions, becoming increasingly fatigued.
I think you mentioned your mom is already in a neutropenic stage and without intervention that doesn’t reverse at this point. The Enasidenib could possible slow or stop the progression of the cancerous cells so that her marrow can start rebuilding with healthy blood cells again.
Truly, I know what an emotional time this is. So I hope you, your mom and family can have some meaningful and heartfelt conversations. This is a personal decision on her part but at 84, she could have some quality time left.
Please let me know what your mom decides and if I can help in any way. Hugs
-
Like -
Helpful -
Hug
3 ReactionsThank you Lori for such a quick response. I am so glad that your transplant was successful! You sure went through a lot! We received the diagnosis last week. Unfortunately, she started having profuse night sweats in November but was told it was due to age; then in April she became very sick. That started a long process of different blood tests, x-rays, MRI’s and CT scans, with no diagnosis. She wasn’t able to be seen by the oncologist until June - then didn’t have the bone marrow biopsy until July 31. I’m hoping we aren’t too progressed in the leukemia for treatment to help. :0 Moms original response was to opt for transfusions for palliative care, as taking the chemo drug scared her. This information may help her decide to give it a try. Thank you!!
Welcome to Connect @pegsue23. My heart goes out to you and your mom over her diagnosis with Acute Myeloid Leukemia. With or without the genetic mutation AML can be a tricky blood cancer to fight. I had AML with 3 mutations four years ago and it required months of chemo and ultimately a bone marrow transplant. I was 65 at the time and it was quite the adventure, to put it mildly.
As we age, we have less tolerance for aggressive treatments. At 84, your mom may be in the age group where strong chemotherapy is not advisable. Without treatment, sadly, this type of leukemia will continue to progress steadily and sometimes rapidly.
Enasidenib is a targeted therapy for patients with AML who have an IDH2 gene mutation. It helps to slow the progression by blocking several enzymes that promote cell growth of the cancer cells. It can, in some cases, help patients reach remission. Here is the FDA article on the drug:
https://www.fda.gov/news-events/press-announcements/fda-approves-new-targeted-treatment-relapsed-or-refractory-acute-myeloid-leukemia
While it may have some side effects such as nausea, it would be worth a try. I truly understand quality of life vs quantity. But if untreated, there would not be much time remaining. Your mom can give it a try and then stop if there are issues. It’s generally one capsule per day. With or without food. I’d suggest with food.
I had a targeted med similar to this which I took in the weeks between chemo rounds. Believe me, I had qualms too. But I actually had no side effects and the drug did its job, with one of the mutations I had, to keep it from replicating.
We have another member who is 83 and taking Enasidenib for another type of blood cancer. Maybe @deemcrae can share her experience with you and your mom.
How long ago was your mom diagnosed?
Hello… my almost 84 year old mom was just diagnosed with AML IDH2 mutation. We are heartbroken with the research we’ve found so far. Has anyone had experience with the drug Enasidenib? She has neutropenia with also very low white & red blood cell counts. She is worried about the side effects of treatment and trying to process quality of life vs quantity. Any suggestions in dealing with this at this age?
-
Like -
Helpful -
Hug
1 ReactionIt’s wonderful you’ve been able to meet with your donor! That must have been an incredible first meeting!! 💕
My donor was a 20 year old male from the US and after repeated attempts to initiate contact he chooses to remain anonymous. I’d really love to meet this young man who would be 24 now. I sent 2 thank you notes the first year. Then at my 2nd and 3rd anniversaries I sent requests for contact to Be the Match to see if my donor would reciprocate. Nope… It’s not like I want to be another old auntie or granny in his life telling him to make good decisions😅. I just want to let him know how his gift has impacted my life, along with family and friends.
Quite frankly I would not be alive right now if not for his generosity. He owes me nothing but I owe him everything!
-
Like -
Helpful -
Hug
1 ReactionMy donor was found in Germany also - a young college student who registered to donate when he was 16 and a family friend was needing a stem cell donor. I became the beneficiary of this man’s generosity. He will be coming to the US for the third time with his parents to visit us.
-
Like -
Helpful -
Hug
1 Reaction