Hi @callyfreed Just popping in to see how your mom is doing with her treatments. If she’s on the typical 7+3 induction for AML, she’s more than halfway into her week. I hope she’s feeling ok. Any nausea?
It has been helpful reading everyone’s comments here. This has been tough for my mom at 92. Amazingly she has not needed a transfusion yet. Got close. She has felt exhausted and has little appetite but not truly nauseous. She understands she must eat and is working hard at that. She has had severe pitting edema in her feet and ankles. They started get on furosemide (lasix) and increased it twice. Her potassium went very low (3.1) so they have added potassium now. Started round two this week. They put her off an extra week to let her numbers come back up. She opted not to get another bone marrow biopsy until after round two. She’s still having a hard time believing this will get better. Her doctor says she is actually tolerating it well and has been very encouraging. Folks stories of coming out the other side without bone marrow transplant have been helpful. They cut her IV chemo dose in half for this round. Will continue on the Venclexta for the 14 days. Still hard to believe she will have to do this every month to month and a half for the rest of her life. I have been reading her all the positive responses from this thread. I appreciate being able to ask some of the tough questions on here.
Hi, Kristen. And greetings to your Mom. I read through your note and have a couple of thoughts. I am a 10year survivor of AML and very tough chemotherapy program. I was 59 years old at that time.
There are no easy answers when making these difficult decisions. As adult children and a caregiver, I think our intentions are the same as when we caregive for our children. We want to love and support them on their journey. When faced with decisions about our health care, cancer treatment, surgery, etc., we make the best decision with the information we have at the time. Then on our journey forward, sometimes the information changes and we decide to either continue treatment or make a different choice. And that’s okay. I know I may face this disease again. I also know my family will support whatever decision I make about accepting or declining treatment. There are no easy decisions in this situation, but surrounded by love and support is all I will need to make the right decision for me. Your Mom is blessed to have your love and support on her journey. Remember to take care of yourself too. Keeping you in thought and prayer.
Update on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.
Update on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.
Hi! Thanks for sharing the good news update. I admire this generation so much. They can teach us all how to be resilient in difficult times and shining examples of how to face adversity with grace and courage. Blessings!
Update on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.
Update on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.
This is fabulous news about your mom, @kristenwhittle! She’s quite the trouper and gives hope to a growing number of members who generally don’t have a lot of options when developing AML at a later time of life when traditional regimens of Chemo or a bone marrow transplant aren’t appropriate!
The lymph drainage massage will really help her recover from her rounds of the chemo by helping to move it out of her body. I’m sure she’s impatient to get her energy back!
Thank you for sharing this wonderful news and congratulation your mum for me! Please keep us in the loop, ok?
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Hey Lori!
Mom isn’t in a 7+3 regiment right now, she just finished up her Decitabind (IV) treatment and she’ll be on
Venetoclax (pill) for 28 days.
She got sick a few times over the last couple days, but seems to be feeling okay for right now.
Thanks for checking in!
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1 ReactionIt has been helpful reading everyone’s comments here. This has been tough for my mom at 92. Amazingly she has not needed a transfusion yet. Got close. She has felt exhausted and has little appetite but not truly nauseous. She understands she must eat and is working hard at that. She has had severe pitting edema in her feet and ankles. They started get on furosemide (lasix) and increased it twice. Her potassium went very low (3.1) so they have added potassium now. Started round two this week. They put her off an extra week to let her numbers come back up. She opted not to get another bone marrow biopsy until after round two. She’s still having a hard time believing this will get better. Her doctor says she is actually tolerating it well and has been very encouraging. Folks stories of coming out the other side without bone marrow transplant have been helpful. They cut her IV chemo dose in half for this round. Will continue on the Venclexta for the 14 days. Still hard to believe she will have to do this every month to month and a half for the rest of her life. I have been reading her all the positive responses from this thread. I appreciate being able to ask some of the tough questions on here.
Hi, Kristen. And greetings to your Mom. I read through your note and have a couple of thoughts. I am a 10year survivor of AML and very tough chemotherapy program. I was 59 years old at that time.
There are no easy answers when making these difficult decisions. As adult children and a caregiver, I think our intentions are the same as when we caregive for our children. We want to love and support them on their journey. When faced with decisions about our health care, cancer treatment, surgery, etc., we make the best decision with the information we have at the time. Then on our journey forward, sometimes the information changes and we decide to either continue treatment or make a different choice. And that’s okay. I know I may face this disease again. I also know my family will support whatever decision I make about accepting or declining treatment. There are no easy decisions in this situation, but surrounded by love and support is all I will need to make the right decision for me. Your Mom is blessed to have your love and support on her journey. Remember to take care of yourself too. Keeping you in thought and prayer.
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Helpful -
Hug
2 ReactionsUpdate on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.
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Like -
Helpful -
Hug
2 ReactionsHi! Thanks for sharing the good news update. I admire this generation so much. They can teach us all how to be resilient in difficult times and shining examples of how to face adversity with grace and courage. Blessings!
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1 ReactionFabulous news about your mom, @kristenwhittle. I'm throwing confetti for you and your mom.
How was the appointment with the Lymphatic Clinic?
This is fabulous news about your mom, @kristenwhittle! She’s quite the trouper and gives hope to a growing number of members who generally don’t have a lot of options when developing AML at a later time of life when traditional regimens of Chemo or a bone marrow transplant aren’t appropriate!
The lymph drainage massage will really help her recover from her rounds of the chemo by helping to move it out of her body. I’m sure she’s impatient to get her energy back!
Thank you for sharing this wonderful news and congratulation your mum for me! Please keep us in the loop, ok?