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

What are you doing to keep AML from relapse after transplant?

Posted by g4c @g4c, Jan 23 6:07pm

Looking to find a means to decrease the risk of AML relapse. Looking to implement some supplements to boost the immune system such as medicinal mushrooms, EpiCor, low glycemic diet, exercise, and more. Reading Jane McLellands book on starving cancer and considering implementing some of her supplements and suggestions. Anyone have experience with this? Thanks for any help.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 26 9:10am
In reply to @g4c "Thank you so so much!! You have given me a tangible beacon of hope, as good..." + (show)
@g4c

Thank you so so much!! You have given me a tangible beacon of hope, as good as any medicine. My wife and I both had tears of joy after reading your words. I’m going to print it out and put it up on my motivation board. I had 100 days of skin GVHD with multiple rounds of steroids and 19 rounds of photopheresis to calm my transplant (I nicknamed the “piranha”) so I’m hoping he was good at the graft versus leukemia work. Grateful every day. Blessings to all on this journey.

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I couldn’t help but chuckle this morning with your pet name for your new immune system…Piranha! I get it! Initially I thought of my guys (my donor was a 20 yr male from the US) as Imperial Storm Troopers. But didn’t want ‘them’ to get any ideas! I’d already been attacked by the Death Star forces.
So I switched to thinking of them instead as Minions…envisioning the cuties taking care of business while patrolling my body. Welp, about 6 months in they were then re-dubbed Thugs! (Think West Side Story, the alley scene) Those suckers were just out looking for trouble where there wasn’t any and decided to create their own! Peace talks failed, Turf wars ensued, chemical warfare initiated, thugs retreated and now we’re all living in peaceful valley again!😂 I’ve said it before, those of us who have gone through this odyessy have to keep a sense of humor, a sense of adventure and be adaptable to whatever life throws at us.

One of my favorite magnets given to me through my journey is still on the fridge! “One day you will tell your story about how you overcame what you went through and it’ll be someone else’s survival guide”. That’s why I’m here!

We’ve been given the unique gift of a second chance at life and each of us has a unique story about our BMT odyssey and what brought us to this point.

Now it’s your turn! Here’s the link again if you’d like to share your story.

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
This discussion is fun too! Post a picture if you’d like of your life on the other side of transplant! ☺️

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/
Wishing you and your wife peace and a delighful Sunday!

REPLY
1 reply
g4c | @g4c | Jan 26 9:25pm
In reply to @loribmt "I couldn’t help but chuckle this morning with your pet name for your new immune system…Piranha!..." + (show)
@loribmt

I couldn’t help but chuckle this morning with your pet name for your new immune system…Piranha! I get it! Initially I thought of my guys (my donor was a 20 yr male from the US) as Imperial Storm Troopers. But didn’t want ‘them’ to get any ideas! I’d already been attacked by the Death Star forces.
So I switched to thinking of them instead as Minions…envisioning the cuties taking care of business while patrolling my body. Welp, about 6 months in they were then re-dubbed Thugs! (Think West Side Story, the alley scene) Those suckers were just out looking for trouble where there wasn’t any and decided to create their own! Peace talks failed, Turf wars ensued, chemical warfare initiated, thugs retreated and now we’re all living in peaceful valley again!😂 I’ve said it before, those of us who have gone through this odyessy have to keep a sense of humor, a sense of adventure and be adaptable to whatever life throws at us.

One of my favorite magnets given to me through my journey is still on the fridge! “One day you will tell your story about how you overcame what you went through and it’ll be someone else’s survival guide”. That’s why I’m here!

We’ve been given the unique gift of a second chance at life and each of us has a unique story about our BMT odyssey and what brought us to this point.

Now it’s your turn! Here’s the link again if you’d like to share your story.

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
This discussion is fun too! Post a picture if you’d like of your life on the other side of transplant! ☺️

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/
Wishing you and your wife peace and a delighful Sunday!

Jump to this post

Take great pleasure in knowing that your words are balm for my wounds. I read them multiple times every day now. Hope is such a powerful thing. Ironically I too took some cues from Star Wars. I had my son print out and post in my hospital room “Never tell me the odds” reference to Han Solo flying through the asteroid field. Also from Yoda - “Do or do not, there is no try”. I will take your advice and “connect “ more with this site and people. I am so thankful and grateful that my miracle and blessings continue. 💕

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