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 | Jun 21 10:26am

Do you ever feel like you write something, the universe says no, and the post disappears.!
I wanted to say congrats to 107 days. Lori has said getting us home into our routines is helpful. I was on a number of drugs for a bit longer, but most done within a few months. The chemo pills do want to knock it out. I talked with my older sister who is walking through treatment right now. Her goal is to get off pill. She said i like pill. I told her no i do not. I do though, take the info the transplant tram provides on pills i have gotten and took them as directed. It made sense and if i found people here on Mayo having had the treatment, talked with my NP and DR, then I did it. As my blood numbers improved, I was taken off each drug. Acyclovir is my remaining transplant drug. I am nearing the end of my vaccines.

I went back to the functional Dr this last month and had a visit yesterday. She told me as their office is listed in my COH files they have been getting updates on tests and treatments. I never asked, so i did not know that. Of course, i have only gone to my primary 2 times recently. Otherwise, 4 years ago when i sent to COH. Four years. I found my breast lump about now in June of 2021. Today she said the blood test i had over a week ago was stellar!! Thyroid, blood sugars, urine and all the HDL and all that was within range or better. Thank God!!!

REPLY
mary612 | @mary612 | Jun 21 10:48am
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?

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Hi @sally66
Congrats on passing the 100 day mark! That’s a big milestone to cross and it sounds like you are doing well too!!

My husband (65yo) had high risk AML with rare genetic mutations, secondary to previous chemotherapy for a different cancer, treated 5 years prior. He had a successful allogeneic stem cell transplant last June. Several medical opinions recommended up to 24 monthly maintenance doses of Azacitadine and Venetoclax, which he started about 90 days after transplant. He has completed 10 monthly treatments.
The latest tests show no evidence of disease. He doesn’t love the treatment weeks because he gets nauseous and tired, but he is able to function and Reglan helps a lot to keep him eating whenever he doesn’t feel well. His labs all remain stable during that time too so he appears to be tolerating it fairly well. He is starting to complain about some brain fog that we will be discussing with his doc next month. Perhaps she will consider allowing an extra week break between treatments?
We understand there is not a lot of data from medical studies supporting exact dosages and outcomes of maintenance therapy but they know enough with the little data they have that maintenance therapy can reduce the risk of relapse.
Wishing you a return of your strength, snd sending up prayers for continued healing. I too believe God has his hand on my shoulder and is guiding us through this life. Thankful for another day each morning!

Mary

REPLY
sally66 | @sally66 | Jun 21 11:38am
In reply to @loribmt "Hi Sally. Holy crow, you got to go home on day 39??? You lucky duck! (Haha,..." + (show)
@loribmt

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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Thanks Lori, you're always such an encouragement. I was done with tacrolimus on June 2. I'm scaling down on a lot of other meds as well which is nice.

REPLY
katgob | @katgob | Jun 21 1:20pm

The transplant teams only keep us on the drugs as needed. Tacro ended for me at day 86. Scaling down on some drugs to give the body time to take over. At over 430 days past transplant, it is amazing to have normal blood numbers. That included the LDL and HDL #'s. Eating better, drinking half my body weight in water daily and exercise works!!

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