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

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

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.

REPLY
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
2 replies
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

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | May 10 8:14am
In reply to @mary612 "Hi Lori! Well my friend, you came through for us again, with your encouragement, wisdom, and..." + (show)
@mary612

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

Jump to this post

Good morning, Mary! Thought it was time to check in with you and Dane to see how everything is going. Can you believe he’s nearing his 1 year re-birthday?! And your little grandson will be turning one right along with his grandpa. What will you be doing to Cell-ebrate the auspicious occasion?

REPLY
1 reply
mary612 | @mary612 | May 16 1:56pm
In reply to @loribmt "Good morning, Mary! Thought it was time to check in with you and Dane to see..." + (show)
@loribmt

Good morning, Mary! Thought it was time to check in with you and Dane to see how everything is going. Can you believe he’s nearing his 1 year re-birthday?! And your little grandson will be turning one right along with his grandpa. What will you be doing to Cell-ebrate the auspicious occasion?

Jump to this post

Hi Lori!
Thank you so kindly for checking in on us. I traveled with a friend for a girls get away this week so I apologize for the late reply.
No I can’t believe we are fast approaching Dane’s one year transplant anniversary! I have lots of feelings as I ponder what my emotions and energy were going through one year ago. It’s almost like flashbacks, and I am truly astounded at all we’ve been through. Dane is doing well. Chimerism
is strong, all lab numbers are good, he’s still tolerating the monthly week-long maintenance treatment pretty well, and he’s had several vaccinations with no issues. Biopsies are every 3 months with next one at the end of this month. He really wanted to get that done before the transplant anniversary so he could truly celebrate. We are planning a trip to Key West to celebrate both his health and our wedding anniversary. First time he will be on a plane since this all started. Doc says he’s ready!
He’s very careful and masks all the time and will continue to do so. He is well aware, with a lot of reminders from me, about sun safety. So we’ll be indoors when the sun is highest in the sky. Fishing (his favorite pastime) will have to wait for early mornings and late afternoons and evenings.
We will also be celebrating our grandson’s one year birthday at the end of June. Gosh, it truly is amazing how everything worked out last year with both events so close. It was tough, I’m not gonna lie, but I feel a divine force was at work in our lives during the worst of it and continues to be present in our lives.
I hope you are looking forward to your transplant re-birth anniversary coming up as well!!

We wish you every joy possible as you mark this incredible milestone!

Mary

REPLY
sally66 | @sally66 | Jun 20 8:46am
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

Lori,
Did you ever have to be on any maintenance chemo for MRD? (Gilteritinib). My Dr says it is usually well tolerated by most. I start it today.
Thx
Sally

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 20 5:07pm
In reply to @sally66 "Lori, Did you ever have to be on any maintenance chemo for MRD? (Gilteritinib). My Dr..." + (show)
@sally66

Lori,
Did you ever have to be on any maintenance chemo for MRD? (Gilteritinib). My Dr says it is usually well tolerated by most. I start it today.
Thx
Sally

Jump to this post

Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking it. I had developed another issue that took center stage and our focus was on that.

How it was explained to me with the maintenance drug was like this: Having the transplant, I’d already gotten an A in the class. The maintenance drug would give me an A+…extra reassurance that the job is good!
It’s like a belts and suspenders maneuver to keep any cancer cells at bay in case they eluded the treatment somehow. If they’re going to reemerge there is a small window of about 18 months or so. It can vary depending on the mutations we had which could impact the potential for relapse. If we can make it past 22 months without a relapse, statistically, the odds of that happening drop appreciably. So the maintenance drug usually isn’t forever.

I know that @mary612’s husband Dane is on maintenance meds, he just reached his 1 year anniversary. Not sure what he’s taking though. Also, @dwolden’s husband, David is or was taking maintenance meds. It’s not unusual for this to happen.

You’re just past the 100 day mark! Whoo whoo! Time for back flips and cartwheels! Feels pretty good huh? When do you get to go home?

REPLY
2 replies
sally66 | @sally66 | Jun 21 8:21am
In reply to @loribmt "Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking..." + (show)
@loribmt

Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking it. I had developed another issue that took center stage and our focus was on that.

How it was explained to me with the maintenance drug was like this: Having the transplant, I’d already gotten an A in the class. The maintenance drug would give me an A+…extra reassurance that the job is good!
It’s like a belts and suspenders maneuver to keep any cancer cells at bay in case they eluded the treatment somehow. If they’re going to reemerge there is a small window of about 18 months or so. It can vary depending on the mutations we had which could impact the potential for relapse. If we can make it past 22 months without a relapse, statistically, the odds of that happening drop appreciably. So the maintenance drug usually isn’t forever.

I know that @mary612’s husband Dane is on maintenance meds, he just reached his 1 year anniversary. Not sure what he’s taking though. Also, @dwolden’s husband, David is or was taking maintenance meds. It’s not unusual for this to happen.

You’re just past the 100 day mark! Whoo whoo! Time for back flips and cartwheels! Feels pretty good huh? When do you get to go home?

Jump to this post

Good morning,
Day +107 today. They sent me home on day 39 which was an unexpected blessing!!
My last biopsy was pretty good other than MRD found microscopically. I'm trying not to be discouraged having to take these chemo pills but I know they will knock it out.
I'm a big faith girl and I know my God has His hand on me. Another biopsy in a month. Otherwise things have gone well. No gvhd! Praise the Lord!💜

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 21 10:07am
In reply to @sally66 "Good morning, Day +107 today. They sent me home on day 39 which was an unexpected..." + (show)
@sally66

Good morning,
Day +107 today. They sent me home on day 39 which was an unexpected blessing!!
My last biopsy was pretty good other than MRD found microscopically. I'm trying not to be discouraged having to take these chemo pills but I know they will knock it out.
I'm a big faith girl and I know my God has His hand on me. Another biopsy in a month. Otherwise things have gone well. No gvhd! Praise the Lord!💜

Jump to this post

Hi Sally. Holy crow, you got to go home on day 39??? You lucky duck! (Haha, mixing it up with my avian friends!). Do you live fairly close to Rochester?

Aw, I know it’s so frustrating to think you’re nearing the finish line with chemo and then finding out that it’s not quite over. It can be helpful to understand why this prescription is necessary.

Gilteritinib is a selective FLT3 inhibitor, meaning it has only one target, the FLT3 mutation. This is one of the nasty drivers behind your AML. I had the same mutation (along with 2 others) and has a higher potential for relapse. So it’s time to rid you of that pest once and for all! The newly implanted stem cells from your donor should help with this. But you’re also still on strong immunosuppressants to hold the new immune system back for a while until the new cells and your body decide they can get along amicably. (Avoiding GVHD)
FLT3, the way it was explained to me, has the ability to elude standard chemotherapy. Some rogue cells carrying the FLT3 mutation can go dormant during chemo, hiding out in the body until it feels it’s safe to emerge! It can also change and adapt to chemo, making it an incredibly resilient beast. In comes Gilteritinib to the rescue. As I mentioned earlier it is a targeted FLT3 inhibitor. You won’t be on this long term. After a period of time, even the FLT3 cells can’t ’hold their breath in hiding’ forever!

So try not to be discouraged! Reading up further on this med, it’s newer and superior to the sorafenib that was suggested for me 6 years ago! This area of cancer research continues to grow and develop! Years ago these targeted drugs didn’t exist. I was able to take the FLT3 targeted Midostaurin during my initial AML treatments, after each month’s round of cytarabine and (idarubicin with induction) which really worked well to keep me in remission until transplant. But midostaurin is for initial AML/FLT3 treatment. Gilteritinib is suggested post transplant or for refactory AML. So now is the time to nip that bugger once and for all.

Have you started the tacro taper yet?

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