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

No Evidence of Disease vs. Minimum Residual Disease AML

Posted by mary612 @mary612, Mar 21 4:39pm

Hi @loribmt !
Hope all is well with you and you continue enjoying each day!

My husband is closing in on day 300 post allogeneic transplant for his high risk AML diagnosis last year. The latest Bone marrow biopsy shows No Evidence of Disease, Hallelujah! He is feeling good, getting a longer leash between doctor appointments with the stem cell team, and still receiving maintenance therapy one week per month. They are even talking about scheduling vaccinations.

He saw a doctor at Moffitt in February while taking time in the sunshine for a month that asked about his MRD (minimum residual disease) status. We haven’t been using that term with our team in Chicago. They use NED (no evidence of disease).

In my initial research, both of those terms refer to the results of a Flow Cytometry test, a next generation sequencing test that looks at the molecular level of his marrow. But MRD appears to be referred to as a deeper level assessment of any residual leukemia cells in his marrow.
When we asked his leukemia doctor about this (via the patient portal) she responded that “he does not have a biomarker for MRD, but that we could possibly send it out with the next biopsy.” We need an in person conversation with her to understand this further.
In the meantime, we are wondering if you have come across these two different terms and understand the difference between them? Any insight would be greatly appreciated.

Many thanks!

Wishing you a beautiful weekend!
Mary

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katgob | @katgob | Mar 21 7:54pm

Mary,
Overall, this is great news!! I expect Lori or another mentor will reply to this with the answer. It is hard to believe we have traveled this road. I am 345 days past transplant. You have reminded me in this story how words like NED and MRD mean more thinking about the future.
Every day I wake up and take a walk. Right now, i feel a little unsettled., so time to do some dishes and to get outside again. I am again happy you two are a team and you support him as you walk this journey together. Thank you for updating us.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Mar 21 8:26pm

Hi Mary and Dane! You’ve both been on my mind so much lately and then the day gets away before I can get a message typed out! Well, this is the best news I’ve seen today! Day 300, clean biopsy and the fact that you two were able to escape for R&R in the warmth of the sunny South for a month! A taste of normalcy that, a year ago, wasn’t in the cards. I couldn’t be happier for both of you!! My days of flips and cartwheels are over but I’m doin’ a happy dance. 😅

It’s really encouraging that Dane’s biopsies and cytometry tests have been clean. You asked about MRD vs NED. In my own experience I’ve only had MRD testing post treatment. That test seems to be more commonly used with leukemia, lymphoma and multiple myeloma to check for any remaining cancer cells which might hide out in the body after treatment and may be undetectable by standard tests. However, I have a close friend who also had AML and her doctor uses NED for her post treatment. I don’t know the protocol for determining which method to use with AML. But since Dane is working with a highly reputable medical clinic, I wouldn’t read too much into the difference in testing…or look for trouble! 😊 As his doctor said, she can request have an MRD requested with his next biopsy. I looked back in my rest results and see that I had one MRD 2 years post transplant.

I pulled up a couple of sites that might give you some insights about the tests. But with Dane’s biopsies being clean and his having monthly maintanence treatments, maybe waiting until is he completely finished with treatments before having the MDR is a better option? It’s a generally recognized in the BMT world that if we can go 22 months without a relapse, then statistically, the odds of having a recurrence drops dramatically. That may be why my MRD was at 24 months. I guess I never thought to ask.

Anyway, here are a couple of sites about MRD:
MDAnderson, https://www.mdanderson.org/cancerwise/what-is-minimal-residual-disease--mrd--multiple-myeloma-lymphoma-leukemia-patients.h00-159383523.html
~~
From the LLS. https://www.lls.org/sites/default/files/2021-05/FSHP5_MRD_Factsheet_Apil2021.pdf
~~
This from healthline.com about NED
https://www.healthline.com/health/cancer/ned-cancer#takeaway
If your husband’s hematologist oncologist is using the term NED, I’d feel pretty warm and fuzzy with that news and take it for what it means. She’s found no evidence of disease. ☺️

REPLY
1 reply
mary612 | @mary612 | Mar 23 9:06pm
In reply to @katgob "Mary, Overall, this is great news!! I expect Lori or another mentor will reply to this..." + (show)
@katgob

Mary,
Overall, this is great news!! I expect Lori or another mentor will reply to this with the answer. It is hard to believe we have traveled this road. I am 345 days past transplant. You have reminded me in this story how words like NED and MRD mean more thinking about the future.
Every day I wake up and take a walk. Right now, i feel a little unsettled., so time to do some dishes and to get outside again. I am again happy you two are a team and you support him as you walk this journey together. Thank you for updating us.

Jump to this post

Hi Kat!
Thank you for the kind words and encouragement. I follow your progress like a cheerleader on the sidelines! Yay!
Almost one year and a beautiful ‘cellebration’ for you! April 9 also happens to be my daughter’s birthday so I’ve always remembered it when I read your updates.

Know that we are so happy for you and celebrate right along with you! Keep smiling, one day at a time!

Mary

REPLY
mary612 | @mary612 | Mar 23 9:19pm
In reply to @loribmt "Hi Mary and Dane! You’ve both been on my mind so much lately and then the..." + (show)
@loribmt

Hi Mary and Dane! You’ve both been on my mind so much lately and then the day gets away before I can get a message typed out! Well, this is the best news I’ve seen today! Day 300, clean biopsy and the fact that you two were able to escape for R&R in the warmth of the sunny South for a month! A taste of normalcy that, a year ago, wasn’t in the cards. I couldn’t be happier for both of you!! My days of flips and cartwheels are over but I’m doin’ a happy dance. 😅

It’s really encouraging that Dane’s biopsies and cytometry tests have been clean. You asked about MRD vs NED. In my own experience I’ve only had MRD testing post treatment. That test seems to be more commonly used with leukemia, lymphoma and multiple myeloma to check for any remaining cancer cells which might hide out in the body after treatment and may be undetectable by standard tests. However, I have a close friend who also had AML and her doctor uses NED for her post treatment. I don’t know the protocol for determining which method to use with AML. But since Dane is working with a highly reputable medical clinic, I wouldn’t read too much into the difference in testing…or look for trouble! 😊 As his doctor said, she can request have an MRD requested with his next biopsy. I looked back in my rest results and see that I had one MRD 2 years post transplant.

I pulled up a couple of sites that might give you some insights about the tests. But with Dane’s biopsies being clean and his having monthly maintanence treatments, maybe waiting until is he completely finished with treatments before having the MDR is a better option? It’s a generally recognized in the BMT world that if we can go 22 months without a relapse, then statistically, the odds of having a recurrence drops dramatically. That may be why my MRD was at 24 months. I guess I never thought to ask.

Anyway, here are a couple of sites about MRD:
MDAnderson, https://www.mdanderson.org/cancerwise/what-is-minimal-residual-disease--mrd--multiple-myeloma-lymphoma-leukemia-patients.h00-159383523.html
~~
From the LLS. https://www.lls.org/sites/default/files/2021-05/FSHP5_MRD_Factsheet_Apil2021.pdf
~~
This from healthline.com about NED
https://www.healthline.com/health/cancer/ned-cancer#takeaway
If your husband’s hematologist oncologist is using the term NED, I’d feel pretty warm and fuzzy with that news and take it for what it means. She’s found no evidence of disease. ☺️

Jump to this post

Hi Lori!
Well my friend, you came through for us again, with your encouragement, wisdom, and very helpful resources. I did a lot of searching but didn’t come across this reference material. Thank you!
It does ease our minds as we were mostly curious but also want to understand so we aren’t missing anything important. Every day of the right kind of surveillance and vigilance as we aim for that 22-24 month mark are super valuable.

I forgot to mention that his chimerism test results are also very solid! 🙏

We learned something new recently when he saw the stem cell team infectious disease doc to get him started on a vaccination schedule. He hadn’t had a CD4 test done yet and the ID doc was a little annoyed because she won’t start any vaccinations unless the patient has a CD4 level above 200.

So we had to ask our stem cell team to order it, and we just learned he is at 211. So another good sign of his immune system growing stronger.

Thank you again for always being here for us! It’s really means so much to both of us every step of this journey.

So happy to hear you are feeling good and back home to enjoy the Spring season.

Mary

Thanks also

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