What happens to the body if you are MRD negative and keep taking imbruvica?

[Lola69]

Hello beautiful people! Was wondering what happens to our body if we take imbruvica and we are MRD negative? I unfortunately live in a province where MRD testing is not funded. My doctor at the Montreal Jewish general said he will eventually try to get me tested for MRD but I don’t think I am MRD as to get MRD one needs to also take Rituxin?? Correct me if I’m wrong. Been on imbruvica since feb. 2016

[Cllcanada Top Poster CURE Hero]

For MRD for SLL, you would require a BMB. MRD ngatives are very hard to achieve on Imbruvica (ibrutinib) monotherapy, you would need venetoclax and rituxan etc.

Hope you are not stopping Imbruvica (ibrutinib), perhaps a 'hold' would be considered, but Imbruvica (ibrutinib) is a lifetime drug, or until it fails... then you need to move fairly rapidly to something else...

~chris

[Lola69 in reply to Cllcanada]

I thought since it’s SLL they should test a node and not the bone marrow?

[Cllcanada Top Poster CURE Hero in reply to Lola69]

Not sure... I have never heard it tested like that... usually blood, which is OK or bone marrow which is better... good question...

~chris

[Lola69 in reply to Cllcanada]

My bloods were normal when I was diagnosed but the FCR messed up my blood. Seems the WBC is at 3.9 finally after 3 years of being at 1!

[J_88 in reply to Cllcanada]

Yes Venetoclax will get you to MRD it comes with a MRD label i heard.

[Lola69 in reply to J_88]

No idea but my friend takes ventoklexa will ask

[Hidden]

Is it suggested that you stop ibrutinib?

[Lola69 in reply to Hidden]

6 months ago my hematologist suggested it .. a bit complicated here as MRD test is not funded

[AdrianUK in reply to Lola69]

With SLL I would have thought that a bone marrow biopsy and CT or perhaps even PETCT (tho I know there’s some controversy about those in CLL) would show you what’s happening and be needed before you could consider if you are MRD negative. Why do you want to stop tho? If your condition is controlled and your drug is well tolerated what makes you want to stop?

[Lola69 in reply to AdrianUK]

Hello Adrian ! I think I need to change the title of this post. I have no intention of stopping imbruvica unless my hematologist suggests I do. ..

[AdrianUK in reply to Lola69]

Yes. I suggest you change the title! Essentially most people will recommend you take it till it stops working.

[Hidden]

Hey Lola

I heard something troubling last Tuesday, the only reason I am repeating it is because my Hem-Onc told it to me....I never heard of it before and if anyone has, I would like further information. But she said

People who stop IB tend to come out of remission with worse chromosome defects....she used that as an argument against IB first and not FCR.

I have no idea if that is true or not, but she seemed pretty certain.

In answer to your question though, MRD is a magical number that exists only on test tubes and computer screens of whitecoats.....it is VERY hard to find and you get a +5 health bonus if you actually find it.

[Lola69 in reply to Hidden]

Hi Scott! I think that depends on what type of deletions a patient has when they are first diagnosed. i received imbruvica after I relapsed from FCR. Here in Montreal they give imbruvica as second line after u fail FCR! I did have 20 wonderful months on FCR THOUGH! oh and in this city u can get imbruvica 1 st line if u are 17 P deleted which I was not but I heard FCR can mess up the chromosomes and make one 17P!!