Husband with AML facing a stem cell transplant

Good morning, and Welcome to Connect, @mary612 First, take a deep breath, hold it for 4 seconds and then exhale for 4 seconds…then feel a warm hug. You just gained a support team for you and your husband. I had a very similar experience as your husband, 5 years ago with 3 mutations and very low prognosis! Having a stem cell transplant was my only hope for recovery. I feel fantastic, as though nothing ever happened! Your husband is in the same boat, and while it all sounds frightening and daunting, this stem cell transplant may be his 2nd chance at life and a gift like no other. There are not guarantees of course, but this gives him his chance to beat AML.

There are a number of us in the forum such as, @alive @edb1123 @kt2013. @jenmkr63 @timt347 @jrwilli1 and others, who have gone through this life saving procedure for AML, MDS or other medical conditions that warranted needing a new immune system. We’re all at different anniversaries and

Your husband is going through chemo now for the AML. The first round, called induction, should help knock down the cancer cells (blasts). In another 28 days or so he’ll most likely have what’s called the Consolidation chemo. That’s the ‘clean up’ of any remaining cells. Sometimes that needs to be repeated so don’t panic if that is necessary. This will get him ready for the stem cell transplant.

Some of the after transplant care is very much like what you’re already practicing with cleanliness, avoiding certain foods for contamination, keeping your husband from being exposed to illnesses, etc.. There is a high degree of sanitation required that his team will cover with you.

The month or so of transplant your husband will be very fatigued and may be nauseated. He may be weak, not feel like eating, and he won’t be able to drive. He’ll need you to accompany him to all of his appointments, having food on hand, getting prescriptions, etc. It’s not like he’ll be incapacitated and need heavy lifting. He’ll just require 24/7 company in case he needs anything.

I have a comprehensive caregiver guide for you to follow that I had when I had my transplant at Mayo. This is a good place for you to start getting ideas of what is expected.
I know!! It’s going to look overwhelming. Just take it bit by bit.

First, look for Allogenic Stem Cell Transplant (using donor cells). That will be the guide to follow for you and your husband.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation

I’m assuming your husband will be at Northwestern for his transplant? Every hospital is a little different, do you know if he’ll be treated as an outpatient or will be in the hospital for several weeks for the transplant?

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Hi @loribmt !
Thank you for the warm and kind message! It brought me to tears. That isn’t hard to do these days. 😊

Thanks so much for the resources as well. Very helpful.

My husband will be in patient for 4-6 weeks at Northwestern for the stem cell transplant. After discharge we will go into the clinic once a week for assessment. The stem cell transplant doctor gave us a very honest explanation of the mortality stats, side effects, etc. He was positive and encouraging as well! Based on what he told us, it’s hard to imagine doing this on an outpatient basis.

After my husband mentioned that he does not drink alcohol anymore (since his bout with cancer 5 years ago) the doctor told him not to discard any old bottles of good rum (my husband used to like a taste of that now and then in the past) because he may want it when he toasts his recovery!

We are coping by trying to stay in the present day as much as possible and not get too far ahead of ourselves with worry about the future.

We are trying to look at this as our ‘adventure’ in healing! He is so strong and I have hope he will make it. Living with all the uncertainty, everything in our life on hold, unable to make plans, is tough sometimes. And every now and then I feel like a rogue wave slams into me and swallows me, leaving me feeling panicked to catch my breath and rise above the water with fear of all the unknowns.

Your positive energy and warmth come through these online pages and I’m grateful I found “your voice.”

Thank you for being so open and sharing your hope with us.

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Hi @loribmt !
Thank you for the warm and kind message! It brought me to tears. That isn’t hard to do these days. 😊

Thanks so much for the resources as well. Very helpful.

My husband will be in patient for 4-6 weeks at Northwestern for the stem cell transplant. After discharge we will go into the clinic once a week for assessment. The stem cell transplant doctor gave us a very honest explanation of the mortality stats, side effects, etc. He was positive and encouraging as well! Based on what he told us, it’s hard to imagine doing this on an outpatient basis.

After my husband mentioned that he does not drink alcohol anymore (since his bout with cancer 5 years ago) the doctor told him not to discard any old bottles of good rum (my husband used to like a taste of that now and then in the past) because he may want it when he toasts his recovery!

We are coping by trying to stay in the present day as much as possible and not get too far ahead of ourselves with worry about the future.

We are trying to look at this as our ‘adventure’ in healing! He is so strong and I have hope he will make it. Living with all the uncertainty, everything in our life on hold, unable to make plans, is tough sometimes. And every now and then I feel like a rogue wave slams into me and swallows me, leaving me feeling panicked to catch my breath and rise above the water with fear of all the unknowns.

Your positive energy and warmth come through these online pages and I’m grateful I found “your voice.”

Thank you for being so open and sharing your hope with us.

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Good morning, and Welcome to Connect, @mary612 First, take a deep breath, hold it for 4 seconds and then exhale for 4 seconds…then feel a warm hug. You just gained a support team for you and your husband. I had a very similar experience as your husband, 5 years ago with 3 mutations and very low prognosis! Having a stem cell transplant was my only hope for recovery. I feel fantastic, as though nothing ever happened! Your husband is in the same boat, and while it all sounds frightening and daunting, this stem cell transplant may be his 2nd chance at life and a gift like no other. There are not guarantees of course, but this gives him his chance to beat AML.

There are a number of us in the forum such as, @alive @edb1123 @kt2013. @jenmkr63 @timt347 @jrwilli1 and others, who have gone through this life saving procedure for AML, MDS or other medical conditions that warranted needing a new immune system. We’re all at different anniversaries and

Your husband is going through chemo now for the AML. The first round, called induction, should help knock down the cancer cells (blasts). In another 28 days or so he’ll most likely have what’s called the Consolidation chemo. That’s the ‘clean up’ of any remaining cells. Sometimes that needs to be repeated so don’t panic if that is necessary. This will get him ready for the stem cell transplant.

Some of the after transplant care is very much like what you’re already practicing with cleanliness, avoiding certain foods for contamination, keeping your husband from being exposed to illnesses, etc.. There is a high degree of sanitation required that his team will cover with you.

The month or so of transplant your husband will be very fatigued and may be nauseated. He may be weak, not feel like eating, and he won’t be able to drive. He’ll need you to accompany him to all of his appointments, having food on hand, getting prescriptions, etc. It’s not like he’ll be incapacitated and need heavy lifting. He’ll just require 24/7 company in case he needs anything.

I have a comprehensive caregiver guide for you to follow that I had when I had my transplant at Mayo. This is a good place for you to start getting ideas of what is expected.
I know!! It’s going to look overwhelming. Just take it bit by bit.

First, look for Allogenic Stem Cell Transplant (using donor cells). That will be the guide to follow for you and your husband.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation

I’m assuming your husband will be at Northwestern for his transplant? Every hospital is a little different, do you know if he’ll be treated as an outpatient or will be in the hospital for several weeks for the transplant?

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Hi Lori, I just want to thank you for all the wonderful information you provide. I have CEL and am told I will need a transplant sooner than later so this is very helpful. I am so impressed that Mayo has this group. There is nothing like this at the hospitals I went to and I really applaud Mayo for supporting it and you for your continued efforts to help everyone. My diagnosis feels very scary and your tips continue to help and inspire. So, thank you.
Warmest regards,
Debbie

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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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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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Lori,
Thank you for sharing the inspiring story about your role in mentoring Sky as she faced and eventually came through her stem cell transplant. God bless you both!
Wow, I agree, it certainly feels like you were meant to help and support all of us here as we embark on our respective journeys on this daunting road.

I have read and re-read your words today and I can’t tell you how much they help me feel calmer and less anxious. You speak with hard-earned authority about this experience but your compassion and positive attitude are the most inspiring.
I feel a little stronger knowing you are all here to support me and by extension, my husband, as we prepare ourselves for what is necessary to endure for his second chance at life.

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