MRD testing

[Gardengirl44]

I was in a trial and done w treatment . Every 3 mths now I get the bloodwork and th MRD blood work gets sent out . Do those of you in similar situation call to get your MRD number? I am torn if I want to obsess on the numbers if symptom free and if other counts are on track. Thoughts ?

[lankisterguy Volunteer]

Hi Gardengirl44,

I track all my numbers with a spreadsheet including the MRD results, but I am an engineer and we love data. More sensors, gages, plots and "feed me data", it gives me a sense of control and confidence.

There are several members of our CLL Society support group that don't want to know their own details "down in the weeds" like I do. They prefer to hang out in our meetings, just for emotional support/belonging with people that understand their disease.

So choose what helps you emotionally. Best of luck.

Len

[Gardengirl44 in reply to lankisterguy]

Thanks Len. I am torn! Great advice.

[spi3 in reply to lankisterguy]

Question- I thought MRD combines both bone marrow along with blood tests for the results? I do believe that MRD tests are God sent tests - they literally help your Dr and you to keep your body and spirit well.

[lankisterguy Volunteer in reply to spi3]

Hi spi3,

My impression is that the MRD test can be done on either blood or bone marrow aspiration. In most cases the blood version is nearly as accurate as bone marrow. So unless there is a reason to do a BMB- why bother?

The exception might be those with SLL and enlarged nodes at time for treatment, along with normal ALC Lymph levels at time for treatment.

From the clinical trial results and many conversations with Dr. Furman, his hypothesis is that keeping the MRD low is better than allowing it to rise.

But patients with less aggressive CLL can pause treatment when they are U-MRD, and some can be off treatment for 2-5 years. Others, like me- see the ALC-Lymph levels roar back quickly ( 4 months from 0 to 1%, and probably 6-8 months to treatment level symptoms) .

I have been in continuous treatment since 2012- with only one 4 month pause. This week I am changing from my 5th targeted treatment to my 6th, hoping to get lower MRD than my current 0.03% - 0.04% range back down to U-MRD.

Len

[spi3 in reply to lankisterguy]

Thank you so much 💓

[spi3 in reply to lankisterguy]

Thany you so much - I also heard that there is a 3rd MRD test - the lymp nodes too - we won't see my hubby's Dr till Jan and I plan on asking him on that one too.

[lankisterguy Volunteer in reply to spi3]

Hi spi3,

I'm puzzled why you are pursuing these rarely used tests. Since the BMB and a node biopsy are invasive, most doctors would avoid them unless there was a specific issue or concern to be investigated.

My doctor would ask what useful treatment decision or what diagnosis would be resolved by having the test results. If it is only curiosity about the results, he would discourage the test, due to the risk (although extremely small- it is still a risk, and triggers the "do no harm" mantra).

Len

[spi3 in reply to lankisterguy]

My hubby is in a study (V&A&O) and at Dana Farber and last Aug they wanted to see if he was in UMRD -(bone marrow and blood only) - he's negative MRD - blood zero CLL bone .0008- this Jan the Dr will determine to if he should get off his V&A because he wants my hubby to be in a very deep and long remission. To me - any tools to help navigate his health and save it is,God's blessings.

[The-Man-with-a-Plan]

Gardening Girl

My sister, who is uMRD, had been obsessing about her numbers for the longest time. One day I told her to stop worrying. "Celebrate the 'win'. Enjoy life. The numbers are what they are."

She thought about it then decided to re-embrace life. I'm sure she still thinks about the 'what ifs' from time to time. Who wouldn't. But she stopped obsessing.

BTW, I am NOT uMRD yet. I'm still taking Venetoclax monotherapy and may never achieve the Holy Grail of treatment. For now, I'm OK with that.

Man with a Plan

[ttomo]

Mine is also done along with normal blood work every three months after the clinical trial I was in finished in 2020. The MRD results are posted on my portal so that it's possible that I sometimes see them before my doctor does. I am always a bit apprehensive before I open them, but I also know that not much woukd probably change for me for quite some time even if they begin to see evidence of CLL. Best wishes as you do whatever you are most comfortable with. Tom