1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Husband with AML facing a stem cell transplant

Posted by mary612 @mary612, Mar 15 7:05am

Hello!
My husband was diagnosed with secondary AML with 2 high risk mutations in January. The prognosis is not good. He is being treated at Northwestern medicine in Chicago. He is responding to the treatment after the first cycle but not full remission yet. They are recommending a stem cell transplant. I’m full of all the feelings! Scared, but trying to trust that my faith will get us through this.
My question is related to caregiver support after the transplant when he is discharged home. We don’t have a lot of family or big social circle nearby.
Any tips on the types of things we should start thinking about in order to give me and my husband the support we will need?
I found this group through the very hopeful messages of @loribmt. Thank you for your positive messages of hope!
Wishing everyone here only the best outcomes and graces!

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

mary612 | @mary612 | Mar 18 9:27am
In reply to @loribmt "Good morning, Mary. I read your lovely reply yesterday. That means so much to me to..." + (show)
@loribmt

Good morning, Mary. I read your lovely reply yesterday. That means so much to me to know that I am making a difference. It is my goal to offer calming reassurance and hope to anyone facing AML (or any leukemia) and possible bone marrow transplant, that there is life on the other side of all the medical drama.

Aw, wasn’t that just the coolest story about Sky? I was so honored to have been part of her journey. It shows the value of this forum, where we members can come together to help guide others through uncharted territory.

No doubt, both you and your husband will have a ton of questions popping along the way. There will be new terms and vocabulary tossed at you, medications, procedures, tests, etc.. Initially, it will feel like everything is coming at you all at one time and a bit overwhelming. Trite but true…take one day at a time and things won’t feel quite so daunting.

As your husband’s caregiver for the SCT, you’ll be involved with all of his appointments. I’m guessing you already have one but just in case, tuck a little journal in your bag for note taking. Don’t hesitate to ask for clarification from his team members. BMT/SCT teams are amazingly compassionate, caring people! So they will be your husband’s new family. There may be some rough days but wow, when your husband comes out on the other side of this, he’ll feel rather invincible. We chimeras (people with 2 sets of DNA) have super powers! 😉

In the meantime avoid Dr Google, just trust the process and his doctors. Your husband is being well taken care of as he goes through his AML treatments. His new future awaits. ☺️ Keep me posted on his progress please! When is his next round of chemo?

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Good morning Lori!

Again, I am so grateful for your reassuring guidance and suggestions. Makes me feel not so alone in all this.

Your encouragement is gold and just what I need to hear now.

My husband is starting cycle 2 of his induction chemo today! Thankfully this chemo cocktail is well tolerated. He will have another bone marrow biopsy on day 21, April 8. He achieved partial remission with 2% blasts from cycle one. They detected the mutations and chromosome changes in the biopsy so she wants to try to clean that out with this cycle while the transplant team works on finding a donor. We don’t know how long that will take. But we do know the transplant doc thinks my husband is a good candidate for the transplant which is a step in the right direction!

My faith is strong and helps me stay in the present, with hope in my heart for coming out the other side. I love your advice to trust the process and his care team. 😊

I’ll keep you posted!

Thank you for being here Lori ! 🙏

REPLY
1 reply
mary612 | @mary612 | Mar 18 9:36am
In reply to @kt2013 "Hi, mary612. Thank you for sharing your story. I am a 10 year survivor of allogeneic..." + (show)
@kt2013

Hi, mary612. Thank you for sharing your story. I am a 10 year survivor of allogeneic transplant for AML in 2013. I was 59 at the time.
Everything you and your husband are feeling is completely normal. I went from great hope to great fear, day by day. I learned to give myself grace for however I was feeling that day. If the day was bad, at the end I locked it in a closet and shut the door. Every day is a new start and that helped me manage the anxiety and uncertainty.
I am a woman of faith and believed that every day of my life was already written. I repeated that to myself A LOT! I have a controlling personality and this was an important lesson for me. You have exactly the right idea, stay in the day!
I also am a caregiver, so asking for help as a single person was not my strength. So the lesson here was when I needed help, others experienced the same good feelings I had as a caregiver (duh!)
One last thought (before this becomes a novel), humor helps. I was not so keen on being bald, but someone told me I had a very round head! I am not sure is that is a good thing or not, but now I know.
You will be in my thoughts and prayers. Thank you for reaching out.

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Hello! Thank you for reaching out in response to my post. I am so happy to hear you are a 10 year survivor! Such a blessing! Your experience and life are inspiring to those of us on this end.
Thank you for sharing your wisdom and reminders to have humor, grace and faith. These are things I value and try to invoke at every turn. We are only human and this road can be tough, so the grace to let the bad days go and wake to another day of hope is so important to remember!

I love the idea that all our days are already written because it is a meaningful reminder to let go and trust the process of life. It can be so painful but it’s support like this that helps me keep my head up.

Wishing you a good week.

Thanks again!

REPLY
1 reply
kt2013 | @kt2013 | Mar 18 3:10pm
In reply to @mary612 "Hello! Thank you for reaching out in response to my post. I am so happy to..." + (show)
@mary612

Hello! Thank you for reaching out in response to my post. I am so happy to hear you are a 10 year survivor! Such a blessing! Your experience and life are inspiring to those of us on this end.
Thank you for sharing your wisdom and reminders to have humor, grace and faith. These are things I value and try to invoke at every turn. We are only human and this road can be tough, so the grace to let the bad days go and wake to another day of hope is so important to remember!

I love the idea that all our days are already written because it is a meaningful reminder to let go and trust the process of life. It can be so painful but it’s support like this that helps me keep my head up.

Wishing you a good week.

Thanks again!

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Thanks for your note. Stay in touch and reach out whenever you need us.
😊☘️

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timt347 | @timt347 | Mar 19 8:01pm

For me, finding a caregiver was the hardest and most expensive part of post-transplant care. What worked was assistance from my sister in searching for caregivers on care.com. She is good at interviewing people. She will ask an open-ended question, and then stop talking. In the ensuing uncomfortable silence, people will start blabbing.

I advise casting a wide net when asking for assistance. Ask your friends and relatives, sure, but also ask them to ask their friends and relatives too. One of my caregivers was the daughter of a cousin (second cousin to me?). She was great.

I did not have success with agencies. In my experience I did not need an RN or CNA, but I did need someone available constantly for about 3 months. What I needed was someone who was courageous, conscientious, calm, well-organized, had some positive energy, and was energetic.

I needed help with transportation, shopping, meals, household maintenance
(like cleaning), going to the pharmacy, and medication management. I had so little energy that I could not have managed the 38 pills per day without help in planning and keeping track of it all.

Don't underestimate the level of fatigue of the patient. One day I got out of bed and made my way to a couch to watch TV. I sat on the couch for 30 minutes staring at the wall, but I did not have sufficient energy to reach for the TV remote to turn it on. After 30 minutes, I got up and went back to bed. That is an example of why the patient needs help.

I asked a lot of people for help, and sometimes I got it. I asked my doctor what I could to to increase my chances of survival. He said: Keep all your appointments, and take the medication. I have found that doing what your doctor wants you to do is a good survival strategy.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 22 6:31am
In reply to @loribmt "Hi Debbie! Sorry for the delay in responding. My husband and I are on our 2.5..." + (show)
@loribmt

Hi Debbie! Sorry for the delay in responding. My husband and I are on our 2.5 day trek back to Wisconsin after spending the winter in a warmer climate! Time to be responsible adults and head home. ☺️. All of this couldn’t or wouldn’t be possible if I hadn’t gone through with my bone marrow transplant.
The first few months after can be challenging, but it is so worth the effort. It gives people like you, @mary612, @kt2013, @katgob and so many others of us the opportunity to have a second chance at life when our diagnosis without a transplant isn’t all that favorable.

So, thank you for the kind words this morning about Connect, Mayo for its support of our forum and letting me know that I’m helping to make a difference for anyone facing a bone marrow transplant. My goal is to offer inspiration, encouragement and hope…and I’m always here to answer any questions you might have.

When it’s time for your transplant can yours be done with your own cells or will you need a donor?

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Hi Lori,

After reading this post, I read several of your posts in this discussion. I was so impressed with your ability to get into the shoes of those you communicate with in this support group. I especially liked your comment in one of the posts when you referred to their experience as an, "adventure in healing." What a great phrase to describe this procedure which needs so much endurance! Thanks for all you do, Lori.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 22 8:14am
In reply to @hopeful33250 "Hi Lori, After reading this post, I read several of your posts in this discussion. I..." + (show)
@hopeful33250

Hi Lori,

After reading this post, I read several of your posts in this discussion. I was so impressed with your ability to get into the shoes of those you communicate with in this support group. I especially liked your comment in one of the posts when you referred to their experience as an, "adventure in healing." What a great phrase to describe this procedure which needs so much endurance! Thanks for all you do, Lori.

Jump to this post

You managed to move me to tears this morning, Teresa. Of course, I get weepy with dish soap commercials…😉 But thank you so much for this truly special post.

Most of us who are in the forum are here because we or family/friends have been tossed into some medical event that has us scrambling for answers. It’s like being lost in a huge wilderness with no idea which way to turn to reach a sanctuary. So it is up to those of us who have found our way out to grab others by the hand and offer them guidance and hope. You have done the same thing for others with your personal health journey, Teresa.

Fred Rogers often told this story about when he was a boy and would see scary things on the news: "My mother would say to me, 'Look for the helpers. You will always find people who are helping.' To this day, especially in times of disaster, I remember my mother's words, and I am always comforted by realizing that there are still so many helpers — so many caring people.”

Connect gives us all the opportunity to be helpers. ☺️

REPLY
deb913 | @deb913 | Mar 23 3:41pm
In reply to @loribmt "Hi Debbie! Sorry for the delay in responding. My husband and I are on our 2.5..." + (show)
@loribmt

Hi Debbie! Sorry for the delay in responding. My husband and I are on our 2.5 day trek back to Wisconsin after spending the winter in a warmer climate! Time to be responsible adults and head home. ☺️. All of this couldn’t or wouldn’t be possible if I hadn’t gone through with my bone marrow transplant.
The first few months after can be challenging, but it is so worth the effort. It gives people like you, @mary612, @kt2013, @katgob and so many others of us the opportunity to have a second chance at life when our diagnosis without a transplant isn’t all that favorable.

So, thank you for the kind words this morning about Connect, Mayo for its support of our forum and letting me know that I’m helping to make a difference for anyone facing a bone marrow transplant. My goal is to offer inspiration, encouragement and hope…and I’m always here to answer any questions you might have.

When it’s time for your transplant can yours be done with your own cells or will you need a donor?

Jump to this post

Hi Lori,
I will need a donor for my stem cell transplant. It actually feels quite hard to decide when to do it because right now I am stable with my CE and feel well. , But my doctors are concerned about waiting because they say it can turn into AML, my eosinophils may start going up or my other health issues may become a problem (lupus and HLH). So I’m scared to wait and scared to do it because it feels wrong to do such a risky procedure when you feel good; but I also understand the importance of doing it when you are healthy. If you have any word of wisdom they’ll be much appreciated.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 23 6:04pm
In reply to @deb913 "Hi Lori, I will need a donor for my stem cell transplant. It actually feels quite..." + (show)
@deb913

Hi Lori,
I will need a donor for my stem cell transplant. It actually feels quite hard to decide when to do it because right now I am stable with my CE and feel well. , But my doctors are concerned about waiting because they say it can turn into AML, my eosinophils may start going up or my other health issues may become a problem (lupus and HLH). So I’m scared to wait and scared to do it because it feels wrong to do such a risky procedure when you feel good; but I also understand the importance of doing it when you are healthy. If you have any word of wisdom they’ll be much appreciated.

Jump to this post

Hi! Oh gosh, I know you have a tough decision ahead of you. It’s easy to drag your heals while you’re feeling fine. But I can tell you from experience, you’ll want to have this done before you morph into AML. It would be much easier now that you’re relatively healthy and not having the chemotherapy required for the AML. Right now you feel good, your condition is stable and you’re strong. Your lupus is quiet, you’d have time to plan your next steps and get things lined up for the transplant.

I realize you’re taking Jakafi but that’s different than the rounds of chemo used to reduced the cancer cells in the blood and bone marrow once you have AML. That weakens your body and your immune system much more than Jakafi.

I also want to point this out…the Allogenic transplant, using donor cells may also cure your lupus. That’s an auto immune disease and you will be getting a new immune system! Whatever allergies you’ve had, autoimmune diseases, etc. may disappear.

Depending on the protocol of your clinic you’ll be expected to have a caregiver 24/7 for several months and to live near the clinic for 100 days. But some clinics have different limits so that’s just from my experience.

My suggestion is to not go online to search for stories or information about Stem Cell Transplants. This will do nothing but make you anxious. When you make the decision to go ahead, your transplant team will be your new family. You need to learn to trust them and to let them be your guide. You’ll have educational classes to give you all the details.
The rest of the info you can get right here. I promise to answer any and all questions honestly. When you’re ready, I also have a ton of information about what to pack for an extended stay away from home, what to expect during transplant and what to do when you go home. Sanitation will be a huge part of your life. There are several other members here who have gone through this procedure as well. We have your back…
Do you live near a transplant center?

REPLY
1 reply
kt2013 | @kt2013 | Mar 24 5:56am
In reply to @deb913 "Hi Lori, I will need a donor for my stem cell transplant. It actually feels quite..." + (show)
@deb913

Hi Lori,
I will need a donor for my stem cell transplant. It actually feels quite hard to decide when to do it because right now I am stable with my CE and feel well. , But my doctors are concerned about waiting because they say it can turn into AML, my eosinophils may start going up or my other health issues may become a problem (lupus and HLH). So I’m scared to wait and scared to do it because it feels wrong to do such a risky procedure when you feel good; but I also understand the importance of doing it when you are healthy. If you have any word of wisdom they’ll be much appreciated.

Jump to this post

Good morning. I am an 11 year survivor of AML after stem cell transplant lift of life from my sister. I remember the uncertainty that set my mind racing and my heart into fear when I was diagnosed. I am a woman of faith, so I will offer this thought to hold onto as you journey forward. We all have God’s phone number, when we need help. It is found in Jeremiah 33.3. “Call to me and I will answer you and tell you great and unreachable things you do not know.” Please know that we are here to support you.

REPLY
deb913 | @deb913 | Mar 25 8:13am
In reply to @loribmt "Hi! Oh gosh, I know you have a tough decision ahead of you. It’s easy to..." + (show)
@loribmt

Hi! Oh gosh, I know you have a tough decision ahead of you. It’s easy to drag your heals while you’re feeling fine. But I can tell you from experience, you’ll want to have this done before you morph into AML. It would be much easier now that you’re relatively healthy and not having the chemotherapy required for the AML. Right now you feel good, your condition is stable and you’re strong. Your lupus is quiet, you’d have time to plan your next steps and get things lined up for the transplant.

I realize you’re taking Jakafi but that’s different than the rounds of chemo used to reduced the cancer cells in the blood and bone marrow once you have AML. That weakens your body and your immune system much more than Jakafi.

I also want to point this out…the Allogenic transplant, using donor cells may also cure your lupus. That’s an auto immune disease and you will be getting a new immune system! Whatever allergies you’ve had, autoimmune diseases, etc. may disappear.

Depending on the protocol of your clinic you’ll be expected to have a caregiver 24/7 for several months and to live near the clinic for 100 days. But some clinics have different limits so that’s just from my experience.

My suggestion is to not go online to search for stories or information about Stem Cell Transplants. This will do nothing but make you anxious. When you make the decision to go ahead, your transplant team will be your new family. You need to learn to trust them and to let them be your guide. You’ll have educational classes to give you all the details.
The rest of the info you can get right here. I promise to answer any and all questions honestly. When you’re ready, I also have a ton of information about what to pack for an extended stay away from home, what to expect during transplant and what to do when you go home. Sanitation will be a huge part of your life. There are several other members here who have gone through this procedure as well. We have your back…
Do you live near a transplant center?

Jump to this post

Hi Lori,
Your perspective is very helpful. And you’re right, my jakifi and the hydrea are very easy for me with minimal side effects so I get what you are saying about wanting to do sct while in good health.

I live about 45 minutes from the hospital, and they said, for sct - 1 month in hospital then at least 2 weeks in accommodations very close to hospital and then can go home and be 45 minutes away. How did you decide on the best place for your stem cell transplant? I’ve been happy with the care I’ve gotten at my current hospital but was wondering if bigger cancer hospitals offer anything better and how to evaluate the best place to have it done. I did go to a bigger cancer hospital for a second opinion and they concurred with everything done thus far and the need for sct.

Are there any questions you’d suggest I ask stem cell doctor at this point to evaluate best place or just general questions ( we had initial meeting and have a follow up to go over initial match results etc).

Thank you,
Debbie

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