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
Hi Jan! I’m sorry to hear about your diagnosis. It’s a tough diagnosis and treatment options can be difficult to navigate. When I was diagnosed with AML seven years ago, I didn’t know anyone with the same diagnosis. I didn’t meet an AML survivor personally until sometime after my transplant. It’s hard to walk through that darkness without support. I’m glad you reached out here!
I’m not sure where you are receiving your treatment. With a diagnosis like this, I recommend reaching out to the top medical center close to you that treats a lot of patients with leukemia. I was diagnosed at a pretty good size hospital in Indiana, but the oncologist who broke the news to me told me that my best chances of being successfully treated were 3 hours away. That recommendation lead me to a transplant center. The transplant saved my live!
Hi Jan! I’m sorry to hear about your diagnosis. It’s a tough diagnosis and treatment options can be difficult to navigate. When I was diagnosed with AML seven years ago, I didn’t know anyone with the same diagnosis. I didn’t meet an AML survivor personally until sometime after my transplant. It’s hard to walk through that darkness without support. I’m glad you reached out here!
I’m not sure where you are receiving your treatment. With a diagnosis like this, I recommend reaching out to the top medical center close to you that treats a lot of patients with leukemia. I was diagnosed at a pretty good size hospital in Indiana, but the oncologist who broke the news to me told me that my best chances of being successfully treated were 3 hours away. That recommendation lead me to a transplant center. The transplant saved my live!
Thank you for responding so quickly. I was originally diagnosed at a small hospital in Ilinois not far from my home. I am really not happy there but am still going for treatments there. I did go to Froedert in Wisconsin which is a huge hospital, and a very good one. He is the one that told me I have 15 to 18 months unless I get a transplant. But then proceeded to tell me only 25% survive. I am really scared of the transplant as you can die from that. I am going to Northwestern Memorial Hospital tomorrow for a third opinion, but not expecting good news although trying to stay optimistic. I am happy to hear that you are a survivor of 7 years. Probably much younger than me though. Question, where was your transplant center in Indiana? Maybe I'll get a 4th opinion! Indiana is a state over. I hope I'm not bothering you. I have so many questions and don't know where to turn. Thank you. Jan
Thank you for responding so quickly. I was originally diagnosed at a small hospital in Ilinois not far from my home. I am really not happy there but am still going for treatments there. I did go to Froedert in Wisconsin which is a huge hospital, and a very good one. He is the one that told me I have 15 to 18 months unless I get a transplant. But then proceeded to tell me only 25% survive. I am really scared of the transplant as you can die from that. I am going to Northwestern Memorial Hospital tomorrow for a third opinion, but not expecting good news although trying to stay optimistic. I am happy to hear that you are a survivor of 7 years. Probably much younger than me though. Question, where was your transplant center in Indiana? Maybe I'll get a 4th opinion! Indiana is a state over. I hope I'm not bothering you. I have so many questions and don't know where to turn. Thank you. Jan
I was 51 when I had my transplant, but it’s a lot more common now to see people past 65 who qualify for a transplant. There are a lot of factors involved and it’s important that a good transplant center evaluates and makes a recommendation. I had my transplant at IU Health in Indy, but I think they were in the process of merging with Methodist Hospital. I may be wrong, since I moved to Arizona and now see an oncologist at Mayo in Phoenix. I do highly recommend the transplant center I went through. I recommend doing some research. Be The Match is a nonprofit that matches stem cell donors with recipients and they found my donor in Germany. Look on their website - they list all the transplant centers and their statistics. You want to find a center that performs a good number of transplants and has good statistics.
You are welcome to send me a private message and we can chat on Zoom.
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! 🙃
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
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. ☺️
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
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?
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.
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Hi Jan! I’m sorry to hear about your diagnosis. It’s a tough diagnosis and treatment options can be difficult to navigate. When I was diagnosed with AML seven years ago, I didn’t know anyone with the same diagnosis. I didn’t meet an AML survivor personally until sometime after my transplant. It’s hard to walk through that darkness without support. I’m glad you reached out here!
I’m not sure where you are receiving your treatment. With a diagnosis like this, I recommend reaching out to the top medical center close to you that treats a lot of patients with leukemia. I was diagnosed at a pretty good size hospital in Indiana, but the oncologist who broke the news to me told me that my best chances of being successfully treated were 3 hours away. That recommendation lead me to a transplant center. The transplant saved my live!
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3 ReactionsThank you for responding so quickly. I was originally diagnosed at a small hospital in Ilinois not far from my home. I am really not happy there but am still going for treatments there. I did go to Froedert in Wisconsin which is a huge hospital, and a very good one. He is the one that told me I have 15 to 18 months unless I get a transplant. But then proceeded to tell me only 25% survive. I am really scared of the transplant as you can die from that. I am going to Northwestern Memorial Hospital tomorrow for a third opinion, but not expecting good news although trying to stay optimistic. I am happy to hear that you are a survivor of 7 years. Probably much younger than me though. Question, where was your transplant center in Indiana? Maybe I'll get a 4th opinion! Indiana is a state over. I hope I'm not bothering you. I have so many questions and don't know where to turn. Thank you. Jan
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Helpful -
Hug
2 ReactionsI was 51 when I had my transplant, but it’s a lot more common now to see people past 65 who qualify for a transplant. There are a lot of factors involved and it’s important that a good transplant center evaluates and makes a recommendation. I had my transplant at IU Health in Indy, but I think they were in the process of merging with Methodist Hospital. I may be wrong, since I moved to Arizona and now see an oncologist at Mayo in Phoenix. I do highly recommend the transplant center I went through. I recommend doing some research. Be The Match is a nonprofit that matches stem cell donors with recipients and they found my donor in Germany. Look on their website - they list all the transplant centers and their statistics. You want to find a center that performs a good number of transplants and has good statistics.
You are welcome to send me a private message and we can chat on Zoom.
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
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. ☺️
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1 ReactionI 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.
My niece just got diagnosed. Any support groups I follow
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?
Welcome, @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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