← Return to Husband with AML facing a stem cell transplant

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@loribmt

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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Replies to "Good morning, and Welcome to Connect, @mary612 First, take a deep breath, hold it for 4..."

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.

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