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.

@loribmt

Mary, I’m reading the accounting of your husband’s rebirth-day with tears in my eyes! The Chaplin being there, the nurse named Abby, your wedding, the symbolism…all of it. What a special moment for all of you. And he finished up with pancakes for dinner! Love it!
He’s already a model patient and you’re the perfect caregiver. You two can move mountains together! Thank you for the update, cuz I was wondering. 😉

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Hi Lori!
It really was an amazing experience and the most beautiful anniversary gift of all time. The symbolism coinciding with our union - finding each other in mid life after each of us experienced failed marriages- is also not lost on us - a wish granted, a new beginning, a prayer answered. The bittersweet joy of it all!
We sent off a brief note of gratitude to Dane’s donor this morning through our transplant coordinator, anonymous, of course. We just wanted to let him know the transplant went well, we are so grateful to him, and we keep him in our prayers always.
I was finally able to upload a shot of some festive decor I posted in the hospital room. Check it out. 😊

By the way, I read your recent note to him about how yesterday was quite literally the first day of the rest of his life. He really loves hearing your positive voice!
Thank you!

I’ll check in again soon!
Mary

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@mary612

Hospital room decor!

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Hospital Room Decor for our 19th wedding anniversary!

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@mary612

Good morning!
Thank you for your kind words and encouragement. My husband’s transplant went well yesterday, no complications! Actually, it was quite moving. The chaplain said a beautiful prayer just before the stem cells were infused. I can’t tell you how it felt to watch the blood move in the IV line and into him. My heart was bursting with gratitude and hope.
After a couple of hours, he ordered pancakes and potatoes for dinner! I felt all the prayers being sent up for him/us, truly.
Another fun sign we got was that his nurses’s mane was Abby. That’s our beloved dog’s name too. So we felt like our “pack” was together in spirit! lol.

My husband is good about telling the medical team if he has any new symptoms. We realize how important that is to stay ahead of any complications. I also know that the next couple weeks will not be a walk in the park for him. But I trust the team caring for him to help as best they can to keep him comfortable and nourished. Thank you and @loribmt for generously sharing your experiences and for your support.

Here’s a photo of one of the walls in my husband’s hospital room. We not only celebrated his new re-birth but also our 19th wedding anniversary yesterday! Such a blessing.

@katgob I pray you continue to heal and recover nicely!

Mary

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Mary, I’m reading the accounting of your husband’s rebirth-day with tears in my eyes! The Chaplin being there, the nurse named Abby, your wedding, the symbolism…all of it. What a special moment for all of you. And he finished up with pancakes for dinner! Love it!
He’s already a model patient and you’re the perfect caregiver. You two can move mountains together! Thank you for the update, cuz I was wondering. 😉

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@katgob

To you both! My days following the transplant included 2 more rounds of a chemo for a research study i was in. Fatigue did get me. Partially due to the nausea meds, one being Compazine which made me tired. I also had nausea. Yikes for a couple days. The meds did not stop it. I was then given a nausea med called "emend" that was good for 72 hours. It worked. They said at the City of Hope that it is only used in tough cases. Well, barely eating for two days is not good. I say always tell the daily visiting DR and your RNS how you feel. Mine listened. After the 72 hour pill, it was for my graft to take hold. I had my transplant the 9th and was out of the hospital the 29th.
By the 29th my graft numbers were very good. I had MDS, so my symptoms were a bit lighter as time went on. No cancer cells to fight. Just following all the guidelines for th4e rest of my 100- day journey and beyond.

rayj and Mary, I hope you keep all of us updated so we know what is going on and we can support you. Lori always has bunches of info to share. A Godsend.

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Good morning!
Thank you for your kind words and encouragement. My husband’s transplant went well yesterday, no complications! Actually, it was quite moving. The chaplain said a beautiful prayer just before the stem cells were infused. I can’t tell you how it felt to watch the blood move in the IV line and into him. My heart was bursting with gratitude and hope.
After a couple of hours, he ordered pancakes and potatoes for dinner! I felt all the prayers being sent up for him/us, truly.
Another fun sign we got was that his nurses’s mane was Abby. That’s our beloved dog’s name too. So we felt like our “pack” was together in spirit! lol.

My husband is good about telling the medical team if he has any new symptoms. We realize how important that is to stay ahead of any complications. I also know that the next couple weeks will not be a walk in the park for him. But I trust the team caring for him to help as best they can to keep him comfortable and nourished. Thank you and @loribmt for generously sharing your experiences and for your support.

Here’s a photo of one of the walls in my husband’s hospital room. We not only celebrated his new re-birth but also our 19th wedding anniversary yesterday! Such a blessing.

@katgob I pray you continue to heal and recover nicely!

Mary

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To you both! My days following the transplant included 2 more rounds of a chemo for a research study i was in. Fatigue did get me. Partially due to the nausea meds, one being Compazine which made me tired. I also had nausea. Yikes for a couple days. The meds did not stop it. I was then given a nausea med called "emend" that was good for 72 hours. It worked. They said at the City of Hope that it is only used in tough cases. Well, barely eating for two days is not good. I say always tell the daily visiting DR and your RNS how you feel. Mine listened. After the 72 hour pill, it was for my graft to take hold. I had my transplant the 9th and was out of the hospital the 29th.
By the 29th my graft numbers were very good. I had MDS, so my symptoms were a bit lighter as time went on. No cancer cells to fight. Just following all the guidelines for th4e rest of my 100- day journey and beyond.

rayj and Mary, I hope you keep all of us updated so we know what is going on and we can support you. Lori always has bunches of info to share. A Godsend.

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@loribmt

Hi @rayj. I just replied in another comment to you. I’m just tossing this site in along with the others I sent you. This has so much information for new SCT patients. There is a section on finances. Most insurances pay for the procedure and followups.
Here’s the link to a really helpful site called the nbmtLINK. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

And here is the link to my reply in your other post! https://connect.mayoclinic.org/comment/1085653/

We’ve got your back here. So read up on all the material and don’t hesitate to ask anything that comes to mind!

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Thank you Lori

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@rayj

Thank you for all of this. I am on the evaluation side of things right now. I am 30 miles from the UNC cancer center in Chapel Hill NC. My.next big worry is cost. So far I'm fortunate.

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Hi @rayj. I just replied in another comment to you. I’m just tossing this site in along with the others I sent you. This has so much information for new SCT patients. There is a section on finances. Most insurances pay for the procedure and followups.
Here’s the link to a really helpful site called the nbmtLINK. https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

And here is the link to my reply in your other post! https://connect.mayoclinic.org/comment/1085653/

We’ve got your back here. So read up on all the material and don’t hesitate to ask anything that comes to mind!

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@loribmt

You and your husband have the right attitude! This is an adventure in healing. My husband and I had to relocate to Rochester for 4 months for my procedure. Intitially, the thought of that just left us wide-eyed…but we’d weathered a lot together over our years and this would be a new adventure, medically related with new vocabularies, meds we’ve never heard of and an experience like no other. But wow, was it worth it!! I was super healthy before this all happened and super healthy again.

My transplant doctor gave me all the details too. And when I point blank asked him if I’d be here in 2 years if I didn’t have the transplant, he gave the ‘iffy’ move with his hand. Then I asked if I’d be here 5 years from now. He replied, “No, you won’t”. Well, here I am five years later, durable remission, 70 and still putting on 7-10 miles walking daily! So, your husband has the spirit of endurance needed to embrace this journey and you two will plow right through it! 😉

Being an inpatient for 4-6 weeks will take the brunt of the care off your shoulders. Those are the toughest weeks so by the time he goes home this is all manageable and less ‘tense’ with the day to day business that can come in the first weeks. I actually didn’t mind the outpatient experience. We were right next to the clinic in a hotel and very convenient. If I needed to be in the hospital for anything, I was immediately admitted. It was an amazing experience at Mayo. But each clinic has their own protocols and Northwestern will take outstanding care of your husband and you. ☺️

It’s my pleasure to be able to mentor others going through the same process. I really do feel I have found my voice here so thank you for your kind words. I didn’t have anyone I knew or could talk to before my transplant or AML. It can sure help to be able to speak with someone who has walked the walk.

Speaking of! There was a cool article written a couple years ago about a young woman I mentored who had AML and a SCT. I seldom get to meet someone I mentor in Connect personally so this was a rare treat. You might enjoy reading about Sky and our parallel journeys.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

So don’t be shy about asking any questions. I’m here and so are many others to walk you both through this.

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Thank you for all of this. I am on the evaluation side of things right now. I am 30 miles from the UNC cancer center in Chapel Hill NC. My.next big worry is cost. So far I'm fortunate.

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@mary612

Good morning Lori!
Thanks for checking in. We are at day -1 today! Tomorrow is our 19th wedding anniversary AND my husband’s second birthday! The transplant is scheduled for 3pm. The chaplain here will be giving a blessing and I hope to sneak a little slow dance in with him when we have a few minutes to ourselves. So our odyssey continues! He is stable at the moment. The only hitch has been some high blood pressure readings but he has also had a lot of fluids and Busulfan and Fludarabine “clean out” chemo. Today he started Tacrolimus and Methotrexate starts day +1.

I expect the next week or so to be rough for him so I’m trying to relax into that and know the team here has tools to help him through it. Plus I will be here to help him be as comfortable as possible.
Renting an apartment a few blocks away has been a life saver for me. I’m doing his laundry every day and able to get out for walks instead of spending 2 hours in traffic from home in the morning and evening.
This remains surreal to me. Every now and then I feel stunned that this is our reality and I know the same is true for him. But we are resilient and are adapting.

I decorated his room with photos of our family and friends. I hung hummingbird decals on his windows and I am bringing a Happy Anniversary and a Happy Birthday sign to hang in the room. All little ways of staying positive and bringing a little cheer. The summer sunlight and longer days sure does help too.

Wishing you joy and the best of health as you near your stem cell transplant anniversary!! 🙏

Mary

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Hi Mary! I had a feeling ‘we’ were getting close to Day 0! It’s generally such an anticlimactic day considering all the hype and worry leading up to the infusion of stem cells. But it is quite literally the first day of the rest of your husband’s life…a 2nd chance at life. His room sounds very cheery and uplifting. And I know you bring the sunshine to his life every day. 💕 You two are doing everything right and it’s wonderful that the chaplain will come to lend sense of spiritualism to this enormous milestone in both of your lives.

I’m glad the apartment idea is working out so well. That was a brilliant move on your part. Saves a huge amount of stress and energy for you being so nearby the hospital without fighting the daily traffic and finding parking! You’re both having separate but collective adventures right now! There will be lots of moments to talk about for the years ahead.

You’re adapting so very well to this, Mary. For a short while all of this is your new reality. But it’s not forever, it’s just for the time being. Most aspects of your former lives will resume once this speed bump in your otherwise smooth road of life has been cleared. But there will be more doctor’s appts, blood draws and little changes that might seep in. That will become the ‘new normal’…hate that term. I refer to it as my altered reality. But honestly, it’s a life I would not change if I could!

You are correct in that the next 2 weeks can be a little taxing as the side effects of the preconditioning chemo kicks in and from the transplant itself. As the blood cell count drifts south, fatigue will really take over until engraftment of those new stem cells takes place anywhere from 12+ days, at the earliest, past transplant. When his neutrophil count starts rising, he’ll start feeling much better. Don’t despair. It’s just something he has to go through but once he’s on the other side of this…watch out! You’ll have Superman ready to don the cape and tights and take on the world. LOL maybe not…
Happy Anniversary to you both and Happy Re-Birth to your husband. Give him an air-hug for me!
Prayers for a successful transplant! 🙏 Lori

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