← Return to Struggling with decision to move forward with Allogeneic Transplant

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@aml2018

Hi Deb - I was 57 when I was diagnosed with AML. I didn’t really have any time to make a choice - stem cell transplant or die. Chemo started 36 hours after my diagnosis and my transplant was six weeks later. My brother was my donor (10/10).
Almost 6 years later, I am still in remission/cured. It was not easy at all. My life has changed drastically. Some part for the better, some not.
If you are still deciding, it is so important to consider the caregiving support you will have. It is essential. I was divorced and had just moved to a new state to start a new job. I had been there eight months when bloodwork revealed AML. I started treatment in Texas, then made the decision to fly back home to have the transplant. I did this because I was told I would need more than one caregiver. That was an understatement. It is too much for one person. I needed a caregiving team in addition to my medical team. Recovery is a long process and I needed help getting through it all. I was fortunate and am forever thankful to have family and friends there for me.
You need to know and accept that your life will change. Friends will come and go. You may be able to work again - or not. I have good days and bad days, even five years later. But this is MY experience. It is different for everyone.
When making your decision, keep in mind the impact it has on those who love you and depend on you.
If you have loving and committed support, you will get through this. There are so many medical factors to consider, but it was the PERSONAL SUPPORT that helped me get through. I cannot stress how important this support is for recovery. It is a commitment your caregivers must make. They need to be educated. They may need to take time away from their families and jobs. It truly took a village. My daughter had coordinated a care calendar so someone would be with me at all times.
Having support and understanding that your life will change are, in my opinion, two huge factors when considering whether to forge ahead. Most medical teams don’t address this enough.
All that being said, if I could get through this, so can you. You are stronger than you know!

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Replies to "Hi Deb - I was 57 when I was diagnosed with AML. I didn’t really have..."

Welcome to Connect @aml2018. And welcome to the growing ‘club’ of BMT members. You’re one year ahead of me with your transplant but same issue…AML with no other option but transplant. It was an arduous journey but I’d do it again in a heartbeat. Thank you for sharing your experience in Connect.
Other conversations you might like to join are:
Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Chronic GVHD ~ Let’s talk about it
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Were you able to return to work at your new job?

@aml2018 - Thank you for sharing your experience and the amount of caregiving that was required as well as your day to day life years after transplant. I know the importance of staying positive but feel it must be balanced with knowledge of other possible outcomes - for the patient but also so important for the caregivers. My doctor has just begun the donor search for my BMT required a due to the extensive chemotherapy received for secondary CNS lymphoma that resulted in my bone marrow depletion. Thankfully in remission now and just worrying over the impact of this transplant on my loved ones so very much appreciate your sharing. Take care and best wishes for more good days than bad.

Hi aml2018,
That is very helpful advice thank you. My tentative admission date is October 30th. My doctor had advised only having one caregiver for the first 100 days (my husband) so I had less exposure to infection etc. But you have definitely helped me realize we need a firm backup plan in case it is too much for him or if he becomes sick or unable to care for me. Thanks so much. I appreciate the advice.