MRD Test

[Lavinia-Blue]

After 14 months on Acalabrutinib and Venetoclax, C91.10 Chronic lymphocytic leukemia of B-cell type not having achieved remission. Looks like I failed. 😷

[SofiaDeo]

Oh No, sorry to hear this.

[flipperj]

I did 14 months also and had similar outcome.

[Lavinia-Blue in reply to flipperj]

I also had a new dominant sequence found.

[johnliston]

It took me 24 months to get to uMRD 10 to the -4, you still might get there. I stayed uMRD for 18 months and am still very low MRD at 3 years after end of treatment.

john

[Sanders9]

I am sorry to hear this. My understanding is that not everyone gets to UMRD on any treatment. My husband wasn't UMRD after FCR but was in remission for 3 years and is back on watch and wait. Sending good wishes to you, this forum is the right place for support

[DriedSeaweed]

Does your trial allow you to continue treatment and check again later?

I wouldn’t get too hung up on UMRD. I think some patients that achieve it are hoping they might be cured.

I think the best thing is if you can eventually get off treatment with the combo and forget about CLL for a good amount of time.

[Lavinia-Blue in reply to DriedSeaweed]

Yes, I'm hoping to stay off the meds for awhile, don't know the plan yet.

[DriedSeaweed in reply to Lavinia-Blue]

The non-chemo drugs are still “new” and figuring out combos and improving the drugs might take a while. Hopefully the next time you need treatment there might be a combo of new drugs that eliminates it.

[Newdawn Administrator]

Hi Lavinia. You didn’t fail, the combo did! Even then it simply could be you needed longer time on the meds. It took me nearly 18 months to achieve uMRD on I&V and our chromosomal profiles are very similar.

Was there no possibility of extension or was this a time limited treatment option?

Just noticed the new dominant sequence. Do they believe this is implicated?

Newdawn

[Lavinia-Blue in reply to Newdawn]

Don't know about what the new dominate sequence means yet, or if I will go back on the meds. I see my Dr. later this month, though she may message me with some info.

Though I don’t want to jump to conclusions on the new dominate sequence, it usually isn’t positive.

[Newdawn Administrator in reply to Lavinia-Blue]

I understand it’s a worrying time but hope all goes well. You got very, very close and that’s encouraging! 😊

Newdawn

[HopeME in reply to Lavinia-Blue]

Hello:

I’m Trisomy 12 unmutated like you and after my first treatment with chemo I had residual disease of 2% per 10,000 cells. I lived my life without issue for four years before needing another treatment. Hopefully, you’ll get a number of more years on your current treatment. Stay positive😀.

Best,

Mark

[Ladylin151]

My husband finished v+o a bit over a month ago. He will not have "mrd" testing nor pet scans etc. He had his usual blood test and a CT scan. He is happy and healthier than before and we are planning a vacation. He is essentially back to watch and wait and will be monitored by his specialist every 6 mos. No one expects this to be a "cure"; we fully expect that someday, he will need some sort of treatment again. He certainly did not fail. His specialist reports that in 4 years of prescribing v+o he has had no one need treatment again...yet. Life IS good!

Edit to add: I might be confused but if your treatment worked at all, don't you HAVE to have a "new dominant sequence" as the previous dominant was knocked back??

[Lavinia-Blue in reply to Ladylin151]

That could be on the dominat sequence, but really don't know what the new dominant sequence means.

[Lavinia-Blue in reply to Ladylin151]

Looking at the report I don't think that's what it means, I think it looks like an additional new dominant sequence.

[spi3]

You didn't fail! You are actually a CLL warrior looking for the right weapon to fight it. Are your white or other blood tests coming down? Well you're winning! Each day is a blessing and you will be in my prayers.

[IRN83]

the first time I had this combo I was in MRD after 6 months. Two years later I started this treatment again. After the same time as you I was not MRD, so I am taking it for two years. But I have a normal life, so I am happy.

[Pearlpink]

Oh that’s such a disappointment! However don’t wait for your Dr to contact you, just ring their Secretary and Ask if they can ring you up. Tell them you’re so upset about your results, and get them to explain what’s happening. It will make you feel so much better speaking to them.

I don’t know much about your regime, I’m on obinutuzumab and venetoclax. Even on my treatment, which is a year, they have always said they might extend it, according to results at end.

I’ve got my fingers and toes crossed for you! All my love!

[Lavinia-Blue in reply to Pearlpink]

I've already heard from my Dr. My team are quick responders. We are working on the next steps. Thanks for the thoughts.

[Smakwater]

Lavina-Blue,

Consider, what is the measure of failure?

If I am reading this correctly it says 4554 per million. MRD negative is 1 in 10,000 or 100 per million. It is clearly not the most desired outcome given what little we know about the rest of of you medically speaking. However, it is considered a response depending on where you started and on every other inclusion measure of your treatment.

Hopefully this trial has given you a improvement response regarding disease progression, some better quality of life, hope, knowledge, base line measure for continuing toward the goal that you have for yourself, and for the doctors who will continue with you.

Thank You for participating in a venture that provides research knowledge and hope for those with CLL.

Stay the course and keep looking for the best option for Lovina-Blue, I wish you the best.

JM

[avzuclav]

With only 14 months of combination, it's possible things are still headed towards U-MRD.

I'm not aware of published serial MRD data for acalabrutinib + venetoclax, but ibrutinib + venetoclax data shows more patients are converted to U-MRD over time.

source:

Ibrutinib Plus Venetoclax for First-line Treatment of Chronic Lymphocytic Leukemia

jamanetwork.com/journals/ja...

"With venetoclax-based combination therapies, an important issue is the optimal duration of therapy. In the present trial, patients received 24 cycles of combined therapy. An improved U-MRD rate was noted during the second year of combined therapy for patients who were bone marrow MRD-positive at the end of cycle 12. Therefore, we recently amended the protocol to allow an extra year of combination therapy for patients with bone marrow MRD-positive results at the end of cycle 24. "

I+V serial MRD

[Lavinia-Blue in reply to avzuclav]

Any idea of what a cycle is?

[avzuclav in reply to avzuclav]

If you're looking for even more encouragement, this ASH 2022 abstract showed that some patients needed three years to reach U-MRD.

Combined Ibrutinib and Venetoclax for First-Line Treatment of Patients with Chronic Lymphocytic Leukemia (CLL): 4-Year Follow-up Data

"With a recent trial amendment, MRD+ pts after Cycle 24 could get 12 additional cycles of VEN; 18/23 pts have resumed VEN. 11/18 (61%) pts achieved U-MRD remission during the third year of combined therapy."

"Continuation of combined therapy among marrow MRD+ pts during the second and the third year led to achievement of U-MRD in a subset of pts."

source: ashpublications.org/blood/a...

[lankisterguy Volunteer]

A cycle is usually 4 weeks, 28 days - so there are 13 cycles in a typical year. But sometimes this is blurred a bit.

[Dawson21]

How important is the MRD testing? I sense a real reluctance from my NHS consultant to prescribe the test when I come off medication at the end of this month. He tells me that monitoring WBC and ALC is adequate.

[Lavinia-Blue in reply to Dawson21]

Personally, I think it has real meaning. Particularly in decision making about what path to go on. Some Docs may not agree, as your seems to.

[SofiaDeo in reply to Lavinia-Blue]

I think the "risk stratification" of the patient plays a role in MRD testing. Those with indolent disease, who spent extended time on W&W, and had few SE's while responding to the med.....do they really need this testing, if their CBC bloodwork shows they are controlled/in remission? Compared to patients with adverse markers, and/or having gone through several rounds of treatment.

[2016Longevity in reply to SofiaDeo]

sorry I just jumped in this conversation but what’s the meaning of SE? Side Effects?

[2016Longevity in reply to SofiaDeo]

SE , Side Effects .. right?

[SofiaDeo in reply to 2016Longevity]

Apologies for the medical acronym, yes, you are correct!