Anyone had successful stem cell transplant for AML?

Posted by bradmm @bradmm, Apr 12, 2020

My wife has had a trial treatment at MD Anderson and did pretty well. Now she's scheduled for stem cell transplant which we know has risks. Just curious if anyone else here has been down that road.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

@bradmm

On Thursday, September 17, day 100 after transplant, she fell. Turns out she fractured her humerus, public rami in two places (all that on the left side) and her sacrum. She was released to go home the next day and we struggled to manage with her being immobile that weekend. 8:00 on Monday, I called a home care service and they were out twice to same day. We managed until Saturday the 26th when her pain meds (hydrocodone) stopped working and I had no one call (ortho's office never returned any of 5 calls) so I had no choice but to put her back in the hospital. After me complaining over and over that Norco (hydrocodone) was not working, they finally switched her over to 1000 mg Tylenol. She was spacing out all the time on the opioids but was more clear headed on the Tylenol. Tuesday, the 29th, they moved her over to a rehab facility and I had to start all over with NO NARCO!!! I would have thought the hospital would have given pain meds history. Her jaw had started swelling and my son just called me and said he spoke with ENT and it's caused by invasive fungal sinusitis which is rare and pretty bad news. Friday, I went to rehab to find that they'd moved her back to the hospital because she was bleeding from her eye, nose and mouth (related to the fungal problem) and her platelets were at 5. Later that day her oncologist in San Antonio (we live 50 minutes away) wanted her moved to the hospital there so she got moved again. The next day, I went in to see her and the oncologist working that floor told me that her AML had returned and her blasts were at 42% which was higher than the first time she was called back to MD Anderson. At that point, I called our son and daughter to come but, by the time they got there yesterday evening, she was delirious and wasn't able to talk to anyone. She was then moved to ICU and is there now. She's on intubation and is knocked out with pain meds so at least she's not in pain. She has an infection in her blood stream which supposedly caused the delirium and that's the first step, to try to get that under control. NOTHING is going her way at this moment and I don't expect she'll ever recover. We have had many conversations over the years about quality of life being the top priority and she has none now and likely won't have much later with all that she's up against. The best I can hope for is making her as comfortable as possible. I loved kissing her near bald head today, I love her so much!

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Brad, so so sorry to read this. I will pray that you have the strength to deal with it all and your wife feels better soon. Warmest regards.

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@bradmm

On Thursday, September 17, day 100 after transplant, she fell. Turns out she fractured her humerus, public rami in two places (all that on the left side) and her sacrum. She was released to go home the next day and we struggled to manage with her being immobile that weekend. 8:00 on Monday, I called a home care service and they were out twice to same day. We managed until Saturday the 26th when her pain meds (hydrocodone) stopped working and I had no one call (ortho's office never returned any of 5 calls) so I had no choice but to put her back in the hospital. After me complaining over and over that Norco (hydrocodone) was not working, they finally switched her over to 1000 mg Tylenol. She was spacing out all the time on the opioids but was more clear headed on the Tylenol. Tuesday, the 29th, they moved her over to a rehab facility and I had to start all over with NO NARCO!!! I would have thought the hospital would have given pain meds history. Her jaw had started swelling and my son just called me and said he spoke with ENT and it's caused by invasive fungal sinusitis which is rare and pretty bad news. Friday, I went to rehab to find that they'd moved her back to the hospital because she was bleeding from her eye, nose and mouth (related to the fungal problem) and her platelets were at 5. Later that day her oncologist in San Antonio (we live 50 minutes away) wanted her moved to the hospital there so she got moved again. The next day, I went in to see her and the oncologist working that floor told me that her AML had returned and her blasts were at 42% which was higher than the first time she was called back to MD Anderson. At that point, I called our son and daughter to come but, by the time they got there yesterday evening, she was delirious and wasn't able to talk to anyone. She was then moved to ICU and is there now. She's on intubation and is knocked out with pain meds so at least she's not in pain. She has an infection in her blood stream which supposedly caused the delirium and that's the first step, to try to get that under control. NOTHING is going her way at this moment and I don't expect she'll ever recover. We have had many conversations over the years about quality of life being the top priority and she has none now and likely won't have much later with all that she's up against. The best I can hope for is making her as comfortable as possible. I loved kissing her near bald head today, I love her so much!

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Oh my goodness, Brad, I’m sorry to hear this news. You and your wife have been through so much...your love and dedication to her is so apparent. You’re a wonderful husband and are doing all you can to support and care for her. It is good that she’s back in the hospital where she received her transplant. I believe the quality of care will be better there and hopefully they can get her infection under control. Don’t give up hope. It has worked miracles! You and your family are in my prayers.

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My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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Dear Brad and family, my husband and I are so deeply and profoundly sorry for the loss of your beautiful wife, Yvonne. We know the courage and determination she possessed and you as well, to fight this horrible AML. Your love and devotion to this strong, amazing woman helped her enjoy her life to its fullest. You have been the most wonderful partner to her and can take comfort in knowing you did everything possible to bring encouragement and happiness into her days. Her story is heartbreaking...
Knowing what a difficult time this is, our thoughts and prayers are with you and your family. Please stay in touch with us on here so we can continue to offer whatever support you need. You’re not alone.

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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@bradmn
My sincere condolences for your loss.
The picture is beautiful and her smile is positively radiant. I am sure your strength and resilience were a blessing to her.

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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So sorry to read about the passing of your wife. She has left you and the family wonderful, living memories.

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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My heartfelt condolences Brad. This sure must be a difficult time for you, but please take comfort in the fact that she faced all the challenges with all her might and you were there for her, totally devoted to her wellbeing. Stay strong. Sending lots of positive vibes your way 🙏🏼

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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@bradmm, thank you for sharing such a radiant picture of your lovely wife with us. I'm glad that you are surrounded by your children in what will be a whirlwind and busy time.

Please know that Mayo Clinic Connect is here for those times when you may feel like you're alone and want to reach out to someone who gets it. We're here.
https://connect.mayoclinic.org/group/loss-grief/

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@bradmm

My wife, Yvonne, passed away peacefully at 2:00 yesterday, October 5th. Our son and daughter had just gone back home on Sunday (each 3 hours away) thinking that we had time but, when I went to the hospital Monday morning, they said there wasn't much time so I called them and they returned. The nurses kept Yvonne alive long enough for the three of us to be by her side when life support was removed and it didn't take long after that. She had been through far more than anyone should have to go through this year - very hard for me to witness - and I'm thankful she won't have to go through anymore. Because of her bloodstream infection, she had become delirious before being heavily sedated so she never knew that her AML had come back as strong as ever. She would have been devastated with it being just under 4 months since transplant. I love her very much and miss her terribly, as do her children, but she and I had a wonderful 29 years together (second marriage for both of us) and I will cherish that forever. The picture attached is from March 24 of this year when we returned home from MD Anderson and she was very happy. Her smile was the light of my life. She designed the house that we built and moved into Jan 2018 so I'm surrounded by her presence but it will be a lonely presence because every little thing here reminds me of her. Rest in peace, my love.

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Brad - I am so sorry for your loss. This was hard year for her. And for you - I do know as I reflect on your posts that you were faithful to her, loving her so well. I will pray that you find some peace and comfort as you reflect on her life and are surrounded by family. Still want to be here for you in any ways that would be an encouragement.

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I am so sorry for the loss of your wife. My prayers are with you and the family!

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