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.
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.
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!
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?
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!
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?
Thanks so much for your reply. She has been walking daily around the hospital. She is indeed a force. They said she will likely need a blood transfusion at some point if her numbers get below certain thresholds. One of the questions I have is that even if she achieves remission my understanding is that she will need treatments monthly for the remainder of her life to keep the cancerous cells from taking over again. Is that true for everyone with AML? I know they said that because of her advanced age they will not make her treatments as long or as strong as they would with a younger person. And if she has treatments of some sort every 28 days, will her blood counts drop very low everytime? I will be clarifying with her MD as well. Just wondering what "living with AML" looks like.
Thanks so much for your reply. She has been walking daily around the hospital. She is indeed a force. They said she will likely need a blood transfusion at some point if her numbers get below certain thresholds. One of the questions I have is that even if she achieves remission my understanding is that she will need treatments monthly for the remainder of her life to keep the cancerous cells from taking over again. Is that true for everyone with AML? I know they said that because of her advanced age they will not make her treatments as long or as strong as they would with a younger person. And if she has treatments of some sort every 28 days, will her blood counts drop very low everytime? I will be clarifying with her MD as well. Just wondering what "living with AML" looks like.
Oh my gosh, I’m just smiling ear to ear hearing that your mom is walking a round the hospital. My oncology team and transplant team swore that is what had be recovering so quickly from all my medical drama. I even got other patients to join in. We’d have the teams clapping as we hobbled by with our IV’s To Go. 😂
Going forward, yes, your mom will most likely be on some type of maintenance treatment monthly. Perhaps not the in-hospital chemo but an oral pill to keep the cancer cells from replicating.
If your mom’s treatment is every 28 days she can expect a lowering of blood counts every time and then a return to ‘near normal’. But it also depends on the meds she’s taking. The pill form she’s taking may not impact her as much as the IV chemo. That’s a good question for her hematologist to answer. There are also meds that can be given to help boost her white blood count after chemo.
A little insight into AML. AML is a tricky adversary. Depending on whether there are mutated cells which have caused the process to begin can have a lot to do with success in treating. Some of the cells have a way of going dormant during chemo, hiding out in the body or even morphing to evade chemo. That makes them extremely difficult to completely eradicate because they can come out of dormancy and start in again.
So, with the usual method to treat AML, the initial chemo rounds are very aggressive. The first round is Induction therapy (in hospital) which knocks down the volume of cancer cells. Every 28 days for the next 2 or 3 consecutive months are chemo rounds called Consolidation. Those are also done in the hospital and are meant to kill off any re-emerging cells and get the patient into a remission. If they have no mutations, then some patients are put on maintenance meds and eventually, may be able to stop them.
If there are mutations involved which would make longterm remission unlikely, that’s when a bone marrow transplant is done. Ultimately the only known potential cure for AML is a bone marrow transplant though it’s not a guarantee. I had my BMT 4 years ago and no longer need any medications.
I also have friends who have had a transplant and still require monthly maintenance. So everyone is different.
In your mom’s case, she’s not able to have the aggressive chemo nor is she able to have the transplant. However, it’s been shown to be very effective in older patients who can’t tolerate the heavy chemo to take this milder approach. The monthly drug often has minimal side effects but keeps the cancer cells from replicating.
Having blood transfusions is a part of AML so don’t be concerned. These infusions of blood will keep your mom’s red blood cell count higher resulting in more oxygen circulation in her body. She may require platelets occasionally as well.
Living with AML will have your mom receiving routine blood work to check her numbers to make sure she ‘isn’t a pint low’ and to be vigilant for blast cells in the blood and to make sure the meds are doing their job.
AML will have her checking her temperature daily to make sure she doesn’t have a fever. Anything over 100.3 she should call her hematology oncologist office. They would want to make sure she isn’t experiencing an infection anywhere.
She will be susceptible to illness and infections. So masking will be important along with hand sanitizer, avoiding crowed areas, etc. But the important thing is, your mom should still be able to have a fairly normal life…just different. Again, with out this treatment her time with you would be much shorter.
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!
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?
@loribmt My husband is on Vidaza IV not Decitibine IV. His is currently off Venetoclax (took for approx. 5 weeks) and now taking TIBSOVO which better targets his IDH1 mutation.
@loribmt My husband is on Vidaza IV not Decitibine IV. His is currently off Venetoclax (took for approx. 5 weeks) and now taking TIBSOVO which better targets his IDH1 mutation.
Hi @ccleschats. Thanks for clarifying what meds your husband is/was taking. ☺️ He wasn’t treated with Decitibine but he was on the Venetoclax which is important for keeping the AML cells under control for @kristenwhittle’s mom least at this point. I was thinking it would give her some positive news about how well it can work. I’m hoping her mom gets into remission and the Venetoclax helps to keep her there. I think their goal right now was to get treatment started.
These newer targeted meds for mutations are really amazing. I’m happy your husband is able to get one directed at his IDH1 mutation to keep those cells from replicating. I’m always curious about the meds people take, is he having any side effects from his new meds? Also, what’s his schedule for taking these? Is it monthly, weekly?
Hi @ccleschats. Thanks for clarifying what meds your husband is/was taking. ☺️ He wasn’t treated with Decitibine but he was on the Venetoclax which is important for keeping the AML cells under control for @kristenwhittle’s mom least at this point. I was thinking it would give her some positive news about how well it can work. I’m hoping her mom gets into remission and the Venetoclax helps to keep her there. I think their goal right now was to get treatment started.
These newer targeted meds for mutations are really amazing. I’m happy your husband is able to get one directed at his IDH1 mutation to keep those cells from replicating. I’m always curious about the meds people take, is he having any side effects from his new meds? Also, what’s his schedule for taking these? Is it monthly, weekly?
He is taking the TIVSOBO daily until it doesn't work. Then the plan is to switch back to Venetoclax. He's getting VIDAZA IV 7 days every 28 days.
Because he is doing so well, the next bone marrow aspiration won't be until after round 3 of chemo. Chemo starts again 10/3 which is when he sees the doc, has CBC.
He is taking the TIVSOBO daily until it doesn't work. Then the plan is to switch back to Venetoclax. He's getting VIDAZA IV 7 days every 28 days.
Because he is doing so well, the next bone marrow aspiration won't be until after round 3 of chemo. Chemo starts again 10/3 which is when he sees the doc, has CBC.
There weren’t many options for older patients with AML because it requires aggressive doses of chemotherapy and a potential bone marrow transplant which isn’t always tolerated well. Hearing the positive news about your husband’s treatments working to curtail the progression of the leukemia is really so encouraging and valuable information for others in the same situation.
Thank you for sharing his journey with us. As someone who went through all the hoops with my AML, I’m thrilled your husband is holding his own with his treatments! It gives hope to so many others. ☺️
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.
Thank you for your response. I am starting to get a much better idea of what things could look like after the hospital. I totally agree that trying the treatments at this point makes sense. She will decide when she's had enough. But so far so good. I know it's early in the game. But she has lots of support, both in and out of the hospital. I really appreciate having all of the feedback. I read some of it to my mom and I suspect she may want to join this group once she is home and settled in.
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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.
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3 Reactionsfor 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.
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Helpful -
Hug
1 ReactionWow, @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 ReactionThanks so much for your reply. She has been walking daily around the hospital. She is indeed a force. They said she will likely need a blood transfusion at some point if her numbers get below certain thresholds. One of the questions I have is that even if she achieves remission my understanding is that she will need treatments monthly for the remainder of her life to keep the cancerous cells from taking over again. Is that true for everyone with AML? I know they said that because of her advanced age they will not make her treatments as long or as strong as they would with a younger person. And if she has treatments of some sort every 28 days, will her blood counts drop very low everytime? I will be clarifying with her MD as well. Just wondering what "living with AML" looks like.
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Helpful -
Hug
2 ReactionsOh my gosh, I’m just smiling ear to ear hearing that your mom is walking a round the hospital. My oncology team and transplant team swore that is what had be recovering so quickly from all my medical drama. I even got other patients to join in. We’d have the teams clapping as we hobbled by with our IV’s To Go. 😂
Going forward, yes, your mom will most likely be on some type of maintenance treatment monthly. Perhaps not the in-hospital chemo but an oral pill to keep the cancer cells from replicating.
If your mom’s treatment is every 28 days she can expect a lowering of blood counts every time and then a return to ‘near normal’. But it also depends on the meds she’s taking. The pill form she’s taking may not impact her as much as the IV chemo. That’s a good question for her hematologist to answer. There are also meds that can be given to help boost her white blood count after chemo.
A little insight into AML. AML is a tricky adversary. Depending on whether there are mutated cells which have caused the process to begin can have a lot to do with success in treating. Some of the cells have a way of going dormant during chemo, hiding out in the body or even morphing to evade chemo. That makes them extremely difficult to completely eradicate because they can come out of dormancy and start in again.
So, with the usual method to treat AML, the initial chemo rounds are very aggressive. The first round is Induction therapy (in hospital) which knocks down the volume of cancer cells. Every 28 days for the next 2 or 3 consecutive months are chemo rounds called Consolidation. Those are also done in the hospital and are meant to kill off any re-emerging cells and get the patient into a remission. If they have no mutations, then some patients are put on maintenance meds and eventually, may be able to stop them.
If there are mutations involved which would make longterm remission unlikely, that’s when a bone marrow transplant is done. Ultimately the only known potential cure for AML is a bone marrow transplant though it’s not a guarantee. I had my BMT 4 years ago and no longer need any medications.
I also have friends who have had a transplant and still require monthly maintenance. So everyone is different.
In your mom’s case, she’s not able to have the aggressive chemo nor is she able to have the transplant. However, it’s been shown to be very effective in older patients who can’t tolerate the heavy chemo to take this milder approach. The monthly drug often has minimal side effects but keeps the cancer cells from replicating.
Having blood transfusions is a part of AML so don’t be concerned. These infusions of blood will keep your mom’s red blood cell count higher resulting in more oxygen circulation in her body. She may require platelets occasionally as well.
Living with AML will have your mom receiving routine blood work to check her numbers to make sure she ‘isn’t a pint low’ and to be vigilant for blast cells in the blood and to make sure the meds are doing their job.
AML will have her checking her temperature daily to make sure she doesn’t have a fever. Anything over 100.3 she should call her hematology oncologist office. They would want to make sure she isn’t experiencing an infection anywhere.
She will be susceptible to illness and infections. So masking will be important along with hand sanitizer, avoiding crowed areas, etc. But the important thing is, your mom should still be able to have a fairly normal life…just different. Again, with out this treatment her time with you would be much shorter.
@loribmt My husband is on Vidaza IV not Decitibine IV. His is currently off Venetoclax (took for approx. 5 weeks) and now taking TIBSOVO which better targets his IDH1 mutation.
Hi @ccleschats. Thanks for clarifying what meds your husband is/was taking. ☺️ He wasn’t treated with Decitibine but he was on the Venetoclax which is important for keeping the AML cells under control for @kristenwhittle’s mom least at this point. I was thinking it would give her some positive news about how well it can work. I’m hoping her mom gets into remission and the Venetoclax helps to keep her there. I think their goal right now was to get treatment started.
These newer targeted meds for mutations are really amazing. I’m happy your husband is able to get one directed at his IDH1 mutation to keep those cells from replicating. I’m always curious about the meds people take, is he having any side effects from his new meds? Also, what’s his schedule for taking these? Is it monthly, weekly?
He is taking the TIVSOBO daily until it doesn't work. Then the plan is to switch back to Venetoclax. He's getting VIDAZA IV 7 days every 28 days.
Because he is doing so well, the next bone marrow aspiration won't be until after round 3 of chemo. Chemo starts again 10/3 which is when he sees the doc, has CBC.
He has had no side effects so far.
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1 ReactionThere weren’t many options for older patients with AML because it requires aggressive doses of chemotherapy and a potential bone marrow transplant which isn’t always tolerated well. Hearing the positive news about your husband’s treatments working to curtail the progression of the leukemia is really so encouraging and valuable information for others in the same situation.
Thank you for sharing his journey with us. As someone who went through all the hoops with my AML, I’m thrilled your husband is holding his own with his treatments! It gives hope to so many others. ☺️
Thank you for your response. I am starting to get a much better idea of what things could look like after the hospital. I totally agree that trying the treatments at this point makes sense. She will decide when she's had enough. But so far so good. I know it's early in the game. But she has lots of support, both in and out of the hospital. I really appreciate having all of the feedback. I read some of it to my mom and I suspect she may want to join this group once she is home and settled in.
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Like -
Helpful -
Hug
2 Reactions