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?
I was diagnosed with AML in 2011. I had a rash, and it was misdiagnosed at the ER twice as other conditions. When my symptoms got worse, and I couldn't breathe lying down, I returned a third time to the ER. By this time, both my hands and my feet were about two to three times their original size. I was immediately admitted to the hospital, as I also had double pneumonia. That night the dr. came in and said that I was being transferred to another hospital because my blood test was not normal and not consistent with just being sick with pneumonia. When I arrived, I was so sick that I barely remember that first week. Something around my heart was swollen is all I can remember them saying. I was put in the cardiac unit within what seemed like a day I was transferred to the cancer unit. I can remember a nurse saying it's the cancer unit but it's also general medical, so it doesn't mean you have cancer.
When I arrived, I remember waking up to a very concerned oncologist and hematologist. but I don't remember what she said. I can remember her talking to me that's all. They called my family and told them I was being tested for AML and would have a bone marrow biopsy, and the results would need to be sent to California for confirmation of what they pretty much already knew was AML. 5 days later the results came back, and I indeed had AML. I was 31 years old.
I started 2 different chemo's at the same time and stayed at the hospital for 31 days. I had several blood transfusions including platelets all through a pick line. I went into remission about the 22nd day in the hospital. I had to wait to leave until my neutrophils reached a certain level. I was so very happy to leave that room. I spent a lot of time in pain as the chemo burned me internally from my mouth to my rectum. I went to my oncologist about 4 times a week for about a month then less and less as time went by. Every month for 4 more months I had to be readmitted for maintenance chemo for 5 days every month. That was a breeze compared to induction. I continued to go to an oncologist for about 5 -8 more years. I had a sinus infection during maintenance chemo where my fever was extremely high 103.6 when I got to the hospital, and it went up before they were able to finally bring it down. I was in ICU for a week. My fever was so high in fact that I was delusional. So, several more trips to the hospital for platelets and blood transfusions.
That was almost exactly 14 years ago. I have been in remission ever since 2011! I haven't been feeling very well the last couple of days, and it could be nothing. but honestly, I quit going to an oncologist because I never want to hear those words your out of remission. So, I am kind of scared to even go to the doctor anymore. Do I regret having taken the treatment? no and I wasn't given much of a choice. It wasn't do you want to it was this is what we are going to do. Which at the time I was so sick I couldn't have made that decision. There have been some long-term effects. Would I do it again? probably not. Thats easy to say now though you never know what the situation will be or the decision, if it is yours, will be. I am thankful though for all the doctors and nurses who made that experience the best it possibly could be! They were excellent! -mmh
I was diagnosed with AML in 2011. I had a rash, and it was misdiagnosed at the ER twice as other conditions. When my symptoms got worse, and I couldn't breathe lying down, I returned a third time to the ER. By this time, both my hands and my feet were about two to three times their original size. I was immediately admitted to the hospital, as I also had double pneumonia. That night the dr. came in and said that I was being transferred to another hospital because my blood test was not normal and not consistent with just being sick with pneumonia. When I arrived, I was so sick that I barely remember that first week. Something around my heart was swollen is all I can remember them saying. I was put in the cardiac unit within what seemed like a day I was transferred to the cancer unit. I can remember a nurse saying it's the cancer unit but it's also general medical, so it doesn't mean you have cancer.
When I arrived, I remember waking up to a very concerned oncologist and hematologist. but I don't remember what she said. I can remember her talking to me that's all. They called my family and told them I was being tested for AML and would have a bone marrow biopsy, and the results would need to be sent to California for confirmation of what they pretty much already knew was AML. 5 days later the results came back, and I indeed had AML. I was 31 years old.
I started 2 different chemo's at the same time and stayed at the hospital for 31 days. I had several blood transfusions including platelets all through a pick line. I went into remission about the 22nd day in the hospital. I had to wait to leave until my neutrophils reached a certain level. I was so very happy to leave that room. I spent a lot of time in pain as the chemo burned me internally from my mouth to my rectum. I went to my oncologist about 4 times a week for about a month then less and less as time went by. Every month for 4 more months I had to be readmitted for maintenance chemo for 5 days every month. That was a breeze compared to induction. I continued to go to an oncologist for about 5 -8 more years. I had a sinus infection during maintenance chemo where my fever was extremely high 103.6 when I got to the hospital, and it went up before they were able to finally bring it down. I was in ICU for a week. My fever was so high in fact that I was delusional. So, several more trips to the hospital for platelets and blood transfusions.
That was almost exactly 14 years ago. I have been in remission ever since 2011! I haven't been feeling very well the last couple of days, and it could be nothing. but honestly, I quit going to an oncologist because I never want to hear those words your out of remission. So, I am kind of scared to even go to the doctor anymore. Do I regret having taken the treatment? no and I wasn't given much of a choice. It wasn't do you want to it was this is what we are going to do. Which at the time I was so sick I couldn't have made that decision. There have been some long-term effects. Would I do it again? probably not. Thats easy to say now though you never know what the situation will be or the decision, if it is yours, will be. I am thankful though for all the doctors and nurses who made that experience the best it possibly could be! They were excellent! -mmh
Welcome to Connect, @mmh515. What a harrowing story about your AML journey. That type of leukemia can creep up slowly and then Wham, it comes on like a speeding locomotive out of control during the last couple of weeks. I’ve been there myself and it can be one heckuva a nasty beast to get under control. But you persevered through some brutal chemo to achieve remission and have been healthy for 14 years! That’s outstanding success and it may not be over. The only way you’ll know is to call your hematologist or primary care physician to have some bloodwork done.
I understand feeling scared…no one wants to hear that they’re out of remission. But you’re getting way ahead of things and letting fear take over. I think a reasonable plan of action would be to get a check up. Because not knowing is equally as stressful for you! Sometimes just the action of moving forward can bring a sense of relief.
If there is something going on, then you can make informed decisions with your doctor with how to proceed. There have been new, less traumatic treatment options developed since 2011 for relapsing AML patients. So please, don’t toss away 14 great years without a fight. At least find out why you’re not feeling the greatest right now. It may not be related to your leukemia at all.
What type of symptoms are you having?
Welcome to Connect, @mmh515. What a harrowing story about your AML journey. That type of leukemia can creep up slowly and then Wham, it comes on like a speeding locomotive out of control during the last couple of weeks. I’ve been there myself and it can be one heckuva a nasty beast to get under control. But you persevered through some brutal chemo to achieve remission and have been healthy for 14 years! That’s outstanding success and it may not be over. The only way you’ll know is to call your hematologist or primary care physician to have some bloodwork done.
I understand feeling scared…no one wants to hear that they’re out of remission. But you’re getting way ahead of things and letting fear take over. I think a reasonable plan of action would be to get a check up. Because not knowing is equally as stressful for you! Sometimes just the action of moving forward can bring a sense of relief.
If there is something going on, then you can make informed decisions with your doctor with how to proceed. There have been new, less traumatic treatment options developed since 2011 for relapsing AML patients. So please, don’t toss away 14 great years without a fight. At least find out why you’re not feeling the greatest right now. It may not be related to your leukemia at all.
What type of symptoms are you having?
So, my main symptom is tired all the time, and achy. Most of my symptoms would suggest I have low iron. In any case, I have moved since I last saw the oncologist. I called my former oncologist for a referral. Just waiting to hear back from her nurse. Even if this is nothing it's past time to see an oncologist and get bloodwork. Thank you for the encouragement and your comment.
mmh
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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.
-
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?
I was diagnosed with AML in 2011. I had a rash, and it was misdiagnosed at the ER twice as other conditions. When my symptoms got worse, and I couldn't breathe lying down, I returned a third time to the ER. By this time, both my hands and my feet were about two to three times their original size. I was immediately admitted to the hospital, as I also had double pneumonia. That night the dr. came in and said that I was being transferred to another hospital because my blood test was not normal and not consistent with just being sick with pneumonia. When I arrived, I was so sick that I barely remember that first week. Something around my heart was swollen is all I can remember them saying. I was put in the cardiac unit within what seemed like a day I was transferred to the cancer unit. I can remember a nurse saying it's the cancer unit but it's also general medical, so it doesn't mean you have cancer.
When I arrived, I remember waking up to a very concerned oncologist and hematologist. but I don't remember what she said. I can remember her talking to me that's all. They called my family and told them I was being tested for AML and would have a bone marrow biopsy, and the results would need to be sent to California for confirmation of what they pretty much already knew was AML. 5 days later the results came back, and I indeed had AML. I was 31 years old.
I started 2 different chemo's at the same time and stayed at the hospital for 31 days. I had several blood transfusions including platelets all through a pick line. I went into remission about the 22nd day in the hospital. I had to wait to leave until my neutrophils reached a certain level. I was so very happy to leave that room. I spent a lot of time in pain as the chemo burned me internally from my mouth to my rectum. I went to my oncologist about 4 times a week for about a month then less and less as time went by. Every month for 4 more months I had to be readmitted for maintenance chemo for 5 days every month. That was a breeze compared to induction. I continued to go to an oncologist for about 5 -8 more years. I had a sinus infection during maintenance chemo where my fever was extremely high 103.6 when I got to the hospital, and it went up before they were able to finally bring it down. I was in ICU for a week. My fever was so high in fact that I was delusional. So, several more trips to the hospital for platelets and blood transfusions.
That was almost exactly 14 years ago. I have been in remission ever since 2011! I haven't been feeling very well the last couple of days, and it could be nothing. but honestly, I quit going to an oncologist because I never want to hear those words your out of remission. So, I am kind of scared to even go to the doctor anymore. Do I regret having taken the treatment? no and I wasn't given much of a choice. It wasn't do you want to it was this is what we are going to do. Which at the time I was so sick I couldn't have made that decision. There have been some long-term effects. Would I do it again? probably not. Thats easy to say now though you never know what the situation will be or the decision, if it is yours, will be. I am thankful though for all the doctors and nurses who made that experience the best it possibly could be! They were excellent! -mmh
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4 ReactionsWelcome to Connect, @mmh515. What a harrowing story about your AML journey. That type of leukemia can creep up slowly and then Wham, it comes on like a speeding locomotive out of control during the last couple of weeks. I’ve been there myself and it can be one heckuva a nasty beast to get under control. But you persevered through some brutal chemo to achieve remission and have been healthy for 14 years! That’s outstanding success and it may not be over. The only way you’ll know is to call your hematologist or primary care physician to have some bloodwork done.
I understand feeling scared…no one wants to hear that they’re out of remission. But you’re getting way ahead of things and letting fear take over. I think a reasonable plan of action would be to get a check up. Because not knowing is equally as stressful for you! Sometimes just the action of moving forward can bring a sense of relief.
If there is something going on, then you can make informed decisions with your doctor with how to proceed. There have been new, less traumatic treatment options developed since 2011 for relapsing AML patients. So please, don’t toss away 14 great years without a fight. At least find out why you’re not feeling the greatest right now. It may not be related to your leukemia at all.
What type of symptoms are you having?
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2 ReactionsSo, my main symptom is tired all the time, and achy. Most of my symptoms would suggest I have low iron. In any case, I have moved since I last saw the oncologist. I called my former oncologist for a referral. Just waiting to hear back from her nurse. Even if this is nothing it's past time to see an oncologist and get bloodwork. Thank you for the encouragement and your comment.
mmh
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