Hi Lori, Thanks for checking on me. I did get a third opinion at Northwestern Memorial Hospital in Chicago several weeks ago. I have definitely decided from the beautiful responses and encouragement that I got from this site, from you and others, that I do want to have the transplant. Just need to decide when and that is the scary part. I'm not in a situation right now where it needs to be done immediately. The oncologist that I want to use told me I have time. But I would like to know right now if I have a bone marrow match. Can't I find that out now, so I know, or do I have to wait until I'm ready which may be 9 months from now.
Hi Jan, The third time was a charm. I’m glad you got a 3rd opinion and that this oncologist is working with you so you can go ahead with the transplant. At this point in time, the bone marrow transplant (stem cell transplant) is the only possibility of a long term cure for AML. It is well worth the experience to have that opportunity for a second chance at life. ☺️
As far as finding out if you have a donor, that’s something you’ll have to wait for until you’re ready to commit. When you decide to go ahead with the transplant, at that time you’ll have bloodwork done for a full DNA analysis. Then the search begins. I’m not sure what stem cell search program Northwestern uses but there are several procurement agencies. My cells were found through Be The Match Foundation. Most of these registries are world wide. All the critical DNA-HLA components of your genetics will be run through a data base to find someone who matches you 10 out of 10 biomarkers. Or very close to that.
From my experience and sharing stories with others, the healthier you are going into transplant generally you have a much easier time during recovery.
You’re facing multiple months of chemo with your current treatment plan. That would most likely not be required any longer if you went ahead with the transplant sooner. For most of us with AML who go on to transplant we have an Induction round of chemo, (7+3) then one or two consolidation rounds of chemo for a week, every 28 days. Then immediately into transplant by the next month.
What is your treatment going forward until you’re ready for transplant? Do you have any mutations involved in your AML?
Hi Jan8, I just wanted to pop in today to see how you are. Have you spoken anymore about the possibility of a transplant with your oncologist or gotten a second opinion?
Hi Lori, Thanks for checking on me. I did get a third opinion at Northwestern Memorial Hospital in Chicago several weeks ago. I have definitely decided from the beautiful responses and encouragement that I got from this site, from you and others, that I do want to have the transplant. Just need to decide when and that is the scary part. I'm not in a situation right now where it needs to be done immediately. The oncologist that I want to use told me I have time. But I would like to know right now if I have a bone marrow match. Can't I find that out now, so I know, or do I have to wait until I'm ready which may be 9 months from now.
Hi @naf254 Welcome to Mayo Connect. As a survivor of AML, I’m really sorry to hear that your niece has been diagnosed with leukemia. It can be a challenging cancer but there are some very encouraging and positive stories in our AML support group. @colleenyoung mentioned a few of the active members, along with myself who have had our experiences with AML and also received bone marrow transplants to keep us in a durable remission. We’re all at different periods in our journeys. @jan8@alive@edb1123 have shared their stories in this group.
I don’t know the age of your niece but I also had the pleasure of being a mentor to a young woman, who was 19 when diagnosed with AML. She and I had the same diagnosis and mutations which made our AML similar. We’re 46 years apart but shared so much in common.
Her name is Sky and she also had a bone marrow transplant over a year ago…she’s doing amazingly well. I thought you might like to read about our inspirational story: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
What treatment is your niece receiving now?
I did this so you can connect easily with others like @loribmt@jan8@alive@edb1123@kt2013 who know this journey well and can answer some of your questions and offer a virtual shoulder to lean on.
Thank you for your comments. They really give me hope! No, he said 70% were able to get into a remission after the transplant, but actually only 25% stayed cured. I'm curious to know if there are different procedures at different hospitals for how the transplant is done or is it basically the same. Could anyone walk me thru what I would go thru. I hear its intense. Thanks again, a friend sent this Mayo site to me and I am so happy she did. This is exactly what I was looking for. This is the first time I have had hope since December when I found out. Jan
Hi Jan8, I just wanted to pop in today to see how you are. Have you spoken anymore about the possibility of a transplant with your oncologist or gotten a second opinion?
Hello,
I was diagnosed with AML December 2022. I am overwhelmed and feel hopeless of living very long. Doctor told me 15 to 18 months on my chemo. Have consulted with 2 doctors and having a third opinion this week. The second opinion doctor told me that only 70 % of people who had a transplant will go to remission and then only 25% stayed cured. Not sure how old you are, but I am 71. Scared of whether I would even live though it. My daughters tell me to keep a good attitude, but its hard. I don't know where to turn right now and would love to connect with you.
Thank you, Jan
I was diagnosed with AML 10 years ago, had a transplant and have been in remission ever since. The hospital transplant review doctors questioned whether I could get through it at almost 65, then decided it was reasonable based on my strength and stamina. This AML & other cancer lessons learned over 31 years are in 4 minute YouTube videos. Search Patient 007 myeloma to view.
Thank you for your comments. They really give me hope! No, he said 70% were able to get into a remission after the transplant, but actually only 25% stayed cured. I'm curious to know if there are different procedures at different hospitals for how the transplant is done or is it basically the same. Could anyone walk me thru what I would go thru. I hear its intense. Thanks again, a friend sent this Mayo site to me and I am so happy she did. This is exactly what I was looking for. This is the first time I have had hope since December when I found out. Jan
This is lengthy… but basically what you’d go through with a transplant. We each have our own story so I’m sure my fellow band of friends will help you out with their journeys too, from different clinics.
Honestly, Jan, life holds not guarantees. I’m just grateful to buy more years with my family. Had I not done my transplant it was pretty certain that I wouldn’t make it two more years. I’m so happy that I didn’t hesitate one moment to go through the transplant process. Because I’m coming up on 4 years and feeling fabulous…much like nothing ever happened.
My bone marrow transplant was it Mayo-Rochester. It was one month after my last chemo round (of 4) at my local cancer clinic. Two months before the transplant, I had a meeting with the doctor who would be at the helm of my transplant voyage. We talked about the risks and what would be involved. There was no pressure to make a decision that day. He wanted us to talk it over as a family. My husband, daughter and I already had done that and I gave the nod that day…we were going transplant or bust! ☺️
If I had a second chance at life, I was going to take it!
One month later a donor was found to match my DNA. There is an international search registry for that. Your team takes care of it all!
I can’t speak for other clinics but with Mayo, we are ‘out patients’ and need to remain near the clinic for 100 days along with a caregiver. My husband and I moved temporarily to Rochester in a hotel suite for 4 months. It was my home away from home and it was really nice not having to be in the hospital for weeks or months! It felt like home…
Ok, getting close to transplant time:
There will be a week of testing, educational classes and meetings with your team.
For the transplant itself. There are usually 5 days of conditioning chemo beforehand. The last few days you’ll be admitted into the hospital. Conditioning is a chemotherapy that will remove the old bone marrow, making a squeaky clean environment for your new stem cells.
At the end of that week, is day zero, the day you receive your stem cells. It is done exactly like a blood transfusion and takes about 15-30 minutes. Very anticlimactic!!
During that week, your donor will also be preparing to donate cells so that they arrive in time for your transplant. We can talk more about that later.
The first few weeks after the infusion, you’ll be incredibly tired and possibly nauseated. Your transplant team is amazing at keeping you comfortable during all of it. There will be daily blood tests…but they are easy because there will be a port inserted for all of the infusions and blood draws.
At about days 10-18 your new stem cells should engraft…that means they found their way into your bones and start setting up housekeeping…making new blood cells!
Since you’re going to be very immune-compromised, you’ll need a temporary immune system. So there will be a number of meds you’ll be taking with your transplant for some months. You’ll also be on an anti-rejection medication. But it’s all temporary and it’s a means to an end! It helps you stay healthy until your new immune system takes over.
Jan, I know this all sounds so daunting!! It is! There’s so much coming at you at one time. But truly, there is hope! I believe knowledge is power, but even I stopped reading information about Stem Cell Transplants after the first one! I didn’t want to know the details and I’m glad I didn’t!
Because in reality it has been much easier than the informational article that I read! Those articles spell out ALL the potential issues. Most of us have some things pop up, but certainly not every item listed! You’ll learn to trust your team, they become your family. I let them and my husband worry about all of that for me. I was just along for the ride. ☺️
Hi @jan8 The transplant doctor mentioned that 25% of the patients don’t make it after transplant? The better way to look at that is 75% of the people do!! That doctor sounds way to negative for my taste!
If it’s any reassurance, after transplant, if a patient makes it 22 months without a relapse, then statistically, it is unlikely that the AML will return. If it does, then you continue treatment.
AML cells are tricky, they can mutate and hide out in the old bone marrow, sometimes eluding chemo. They can then re-emerge later and try to gain a foot hold again. The old bone marrow (your old immune system) no longer recognizes these as cancer cells and they can proliferate.
The advantage of a new immune system with a stem cell/bone marrow transplant is that the new system should recognize the cells and neutralize them, keeping you leukemia free from AML.
This is a bugger no matter what you go through…15-18 months of chemo or a stem cell transplant. You have nothing to lose by trying for the transplant if your doctor feels this is an option for you. It is the only potential cure for AML.
I’m happy to hear that you’re seeking other opinions. At 71 you’re not too old for a transplant. There can be factors that play into the decision such as any other illnesses. But it’s not just age. I was 65 at the time of mine. As I mentioned there are 2 other patients from my local cancer center who are in their early 70s and having the transplants. One had his 6 months ago. He is 71. The other person, is a 72 year old female and having hers in a month. Both in Wisconsin at UW-Madison.
There is always hope, Jan. As you can see there are a number of us who have had this same scenario, we’re here to help in any way we can. So keep us posted about your visit to Northwestern. And I think I can speak for all of us here, you are not a bother! You can ask us anything! 🙃
Thank you for your comments. They really give me hope! No, he said 70% were able to get into a remission after the transplant, but actually only 25% stayed cured. I'm curious to know if there are different procedures at different hospitals for how the transplant is done or is it basically the same. Could anyone walk me thru what I would go thru. I hear its intense. Thanks again, a friend sent this Mayo site to me and I am so happy she did. This is exactly what I was looking for. This is the first time I have had hope since December when I found out. Jan
Hi @jan8 The transplant doctor mentioned that 25% of the patients don’t make it after transplant? The better way to look at that is 75% of the people do!! That doctor sounds way to negative for my taste!
If it’s any reassurance, after transplant, if a patient makes it 22 months without a relapse, then statistically, it is unlikely that the AML will return. If it does, then you continue treatment.
AML cells are tricky, they can mutate and hide out in the old bone marrow, sometimes eluding chemo. They can then re-emerge later and try to gain a foot hold again. The old bone marrow (your old immune system) no longer recognizes these as cancer cells and they can proliferate.
The advantage of a new immune system with a stem cell/bone marrow transplant is that the new system should recognize the cells and neutralize them, keeping you leukemia free from AML.
This is a bugger no matter what you go through…15-18 months of chemo or a stem cell transplant. You have nothing to lose by trying for the transplant if your doctor feels this is an option for you. It is the only potential cure for AML.
I’m happy to hear that you’re seeking other opinions. At 71 you’re not too old for a transplant. There can be factors that play into the decision such as any other illnesses. But it’s not just age. I was 65 at the time of mine. As I mentioned there are 2 other patients from my local cancer center who are in their early 70s and having the transplants. One had his 6 months ago. He is 71. The other person, is a 72 year old female and having hers in a month. Both in Wisconsin at UW-Madison.
There is always hope, Jan. As you can see there are a number of us who have had this same scenario, we’re here to help in any way we can. So keep us posted about your visit to Northwestern. And I think I can speak for all of us here, you are not a bother! You can ask us anything! 🙃
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Hi Jan, The third time was a charm. I’m glad you got a 3rd opinion and that this oncologist is working with you so you can go ahead with the transplant. At this point in time, the bone marrow transplant (stem cell transplant) is the only possibility of a long term cure for AML. It is well worth the experience to have that opportunity for a second chance at life. ☺️
As far as finding out if you have a donor, that’s something you’ll have to wait for until you’re ready to commit. When you decide to go ahead with the transplant, at that time you’ll have bloodwork done for a full DNA analysis. Then the search begins. I’m not sure what stem cell search program Northwestern uses but there are several procurement agencies. My cells were found through Be The Match Foundation. Most of these registries are world wide. All the critical DNA-HLA components of your genetics will be run through a data base to find someone who matches you 10 out of 10 biomarkers. Or very close to that.
From my experience and sharing stories with others, the healthier you are going into transplant generally you have a much easier time during recovery.
You’re facing multiple months of chemo with your current treatment plan. That would most likely not be required any longer if you went ahead with the transplant sooner. For most of us with AML who go on to transplant we have an Induction round of chemo, (7+3) then one or two consolidation rounds of chemo for a week, every 28 days. Then immediately into transplant by the next month.
What is your treatment going forward until you’re ready for transplant? Do you have any mutations involved in your AML?
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2 ReactionsHi Lori, Thanks for checking on me. I did get a third opinion at Northwestern Memorial Hospital in Chicago several weeks ago. I have definitely decided from the beautiful responses and encouragement that I got from this site, from you and others, that I do want to have the transplant. Just need to decide when and that is the scary part. I'm not in a situation right now where it needs to be done immediately. The oncologist that I want to use told me I have time. But I would like to know right now if I have a bone marrow match. Can't I find that out now, so I know, or do I have to wait until I'm ready which may be 9 months from now.
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2 ReactionsHi @naf254 Welcome to Mayo Connect. As a survivor of AML, I’m really sorry to hear that your niece has been diagnosed with leukemia. It can be a challenging cancer but there are some very encouraging and positive stories in our AML support group.
@colleenyoung mentioned a few of the active members, along with myself who have had our experiences with AML and also received bone marrow transplants to keep us in a durable remission. We’re all at different periods in our journeys. @jan8 @alive @edb1123 have shared their stories in this group.
I don’t know the age of your niece but I also had the pleasure of being a mentor to a young woman, who was 19 when diagnosed with AML. She and I had the same diagnosis and mutations which made our AML similar. We’re 46 years apart but shared so much in common.
Her name is Sky and she also had a bone marrow transplant over a year ago…she’s doing amazingly well. I thought you might like to read about our inspirational story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
What treatment is your niece receiving now?
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1 ReactionWelcome, @naf254. I can imagine you're concerned about your neice and want to know what you might expect so that you can support her and your family.
I moved your message to this existing discussion:
- Acute myeloid leukemia (AML): What can I expect? https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/
I did this so you can connect easily with others like @loribmt @jan8 @alive @edb1123 @kt2013 who know this journey well and can answer some of your questions and offer a virtual shoulder to lean on.
May I ask how old your niece is?
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1 ReactionHi Jan8, I just wanted to pop in today to see how you are. Have you spoken anymore about the possibility of a transplant with your oncologist or gotten a second opinion?
My niece just got diagnosed. Any support groups I follow
I was diagnosed with AML 10 years ago, had a transplant and have been in remission ever since. The hospital transplant review doctors questioned whether I could get through it at almost 65, then decided it was reasonable based on my strength and stamina. This AML & other cancer lessons learned over 31 years are in 4 minute YouTube videos. Search Patient 007 myeloma to view.
This is lengthy… but basically what you’d go through with a transplant. We each have our own story so I’m sure my fellow band of friends will help you out with their journeys too, from different clinics.
Honestly, Jan, life holds not guarantees. I’m just grateful to buy more years with my family. Had I not done my transplant it was pretty certain that I wouldn’t make it two more years. I’m so happy that I didn’t hesitate one moment to go through the transplant process. Because I’m coming up on 4 years and feeling fabulous…much like nothing ever happened.
My bone marrow transplant was it Mayo-Rochester. It was one month after my last chemo round (of 4) at my local cancer clinic. Two months before the transplant, I had a meeting with the doctor who would be at the helm of my transplant voyage. We talked about the risks and what would be involved. There was no pressure to make a decision that day. He wanted us to talk it over as a family. My husband, daughter and I already had done that and I gave the nod that day…we were going transplant or bust! ☺️
If I had a second chance at life, I was going to take it!
One month later a donor was found to match my DNA. There is an international search registry for that. Your team takes care of it all!
I can’t speak for other clinics but with Mayo, we are ‘out patients’ and need to remain near the clinic for 100 days along with a caregiver. My husband and I moved temporarily to Rochester in a hotel suite for 4 months. It was my home away from home and it was really nice not having to be in the hospital for weeks or months! It felt like home…
Ok, getting close to transplant time:
There will be a week of testing, educational classes and meetings with your team.
For the transplant itself. There are usually 5 days of conditioning chemo beforehand. The last few days you’ll be admitted into the hospital. Conditioning is a chemotherapy that will remove the old bone marrow, making a squeaky clean environment for your new stem cells.
At the end of that week, is day zero, the day you receive your stem cells. It is done exactly like a blood transfusion and takes about 15-30 minutes. Very anticlimactic!!
During that week, your donor will also be preparing to donate cells so that they arrive in time for your transplant. We can talk more about that later.
The first few weeks after the infusion, you’ll be incredibly tired and possibly nauseated. Your transplant team is amazing at keeping you comfortable during all of it. There will be daily blood tests…but they are easy because there will be a port inserted for all of the infusions and blood draws.
At about days 10-18 your new stem cells should engraft…that means they found their way into your bones and start setting up housekeeping…making new blood cells!
Since you’re going to be very immune-compromised, you’ll need a temporary immune system. So there will be a number of meds you’ll be taking with your transplant for some months. You’ll also be on an anti-rejection medication. But it’s all temporary and it’s a means to an end! It helps you stay healthy until your new immune system takes over.
Jan, I know this all sounds so daunting!! It is! There’s so much coming at you at one time. But truly, there is hope! I believe knowledge is power, but even I stopped reading information about Stem Cell Transplants after the first one! I didn’t want to know the details and I’m glad I didn’t!
Because in reality it has been much easier than the informational article that I read! Those articles spell out ALL the potential issues. Most of us have some things pop up, but certainly not every item listed! You’ll learn to trust your team, they become your family. I let them and my husband worry about all of that for me. I was just along for the ride. ☺️
-
Like -
Helpful -
Hug
1 ReactionThank you for your comments. They really give me hope! No, he said 70% were able to get into a remission after the transplant, but actually only 25% stayed cured. I'm curious to know if there are different procedures at different hospitals for how the transplant is done or is it basically the same. Could anyone walk me thru what I would go thru. I hear its intense. Thanks again, a friend sent this Mayo site to me and I am so happy she did. This is exactly what I was looking for. This is the first time I have had hope since December when I found out. Jan
Hi @jan8 The transplant doctor mentioned that 25% of the patients don’t make it after transplant? The better way to look at that is 75% of the people do!! That doctor sounds way to negative for my taste!
If it’s any reassurance, after transplant, if a patient makes it 22 months without a relapse, then statistically, it is unlikely that the AML will return. If it does, then you continue treatment.
AML cells are tricky, they can mutate and hide out in the old bone marrow, sometimes eluding chemo. They can then re-emerge later and try to gain a foot hold again. The old bone marrow (your old immune system) no longer recognizes these as cancer cells and they can proliferate.
The advantage of a new immune system with a stem cell/bone marrow transplant is that the new system should recognize the cells and neutralize them, keeping you leukemia free from AML.
This is a bugger no matter what you go through…15-18 months of chemo or a stem cell transplant. You have nothing to lose by trying for the transplant if your doctor feels this is an option for you. It is the only potential cure for AML.
I’m happy to hear that you’re seeking other opinions. At 71 you’re not too old for a transplant. There can be factors that play into the decision such as any other illnesses. But it’s not just age. I was 65 at the time of mine. As I mentioned there are 2 other patients from my local cancer center who are in their early 70s and having the transplants. One had his 6 months ago. He is 71. The other person, is a 72 year old female and having hers in a month. Both in Wisconsin at UW-Madison.
There is always hope, Jan. As you can see there are a number of us who have had this same scenario, we’re here to help in any way we can. So keep us posted about your visit to Northwestern. And I think I can speak for all of us here, you are not a bother! You can ask us anything! 🙃