Prognostic testing should be done before each and every CLL treatment decision

[bkoffman]

Test Before Treat Survey

How much do you know about the critical tests which can predict which patients will do well on or fail certain medications? Prognostic testing should be done before each and every treatment decision; share your experience and test your knowledge by completing the Test Before Treat Survey! fs27.formsite.com/34PtIt/xg...

[PlanetaryKim]

Thanks Brian. I just filled out the survey. I honestly did not know that it was important to test before second treatment when all treatments involved are novel agents (non-chemo treatments). Can you explain why it is important to test again (FISH, TP53, IgVH) when switching from ibrutinib to venetoclax? I don't see that it would make any difference in treatment decisions. Thanks!

And as far as I know, IgVH test is still not available/funded for CLL patients in British Columbia. So we don't know our mutational status unless we have had it tested during a clinical trial or have traveled to US to have it done at some expense.

kim

[bkoffman CLL CURE Hero in reply to PlanetaryKim]

Thanks for doing the survey. Great question. If you have developed del17p or a TP53 aberration, dual therapies or a clinical trial would often be a better choice in a relapsed setting. Stay strong. Brian

[PlanetaryKim in reply to bkoffman]

Thanks for the answer, Brian.

[Lakeviewg in reply to PlanetaryKim]

I was surprised to hear that the IgVH test is not available in BC Kim. That is really too bad. I am in Ontario and I had it done late last year as I was nearing my first treatment decision. I thought that test would be available everywhere in Canada. Hopefully it is available/funded soon.

Mike

[PlanetaryKim in reply to Lakeviewg]

Well to be honest, I don't know if it is now available in BC. It wasn't in 2017 when I started my first treatment. I asked at the time. Nor has it ever been offered or suggested since even though I recently switched from ibrutinib to venetoclax, and it has not been decided whether I will add rituximab. The IgVH test would perhaps be relevant to that decision. I will look into this further and see if BC now offers/funds that test. Also, we do not yet have MRD testing available in BC. At least not for CLL patients. But they are working on it at BC Cancer Agency and hope to have it available by time I finish (Feb 2022). Do you have it in Ontario?

[PlanetaryKim in reply to Lakeviewg]

Actually... just searching through the site here I found a comment from another BC member that BC does now have IgVH test in Vancouver as of a year ago. I guess I should perhaps be asking about it at my next appointment!

[Lakeviewg in reply to PlanetaryKim]

That is good to hear Kim. Regarding your question about MRD testing Ontario, I believe it is available but I'm not 100% sure. I had talked to my hematologist about MRD testing and he didn't mention that it wasn't available.

Mike

[Thundercat2]

Thank you for this info bkhoffman. I took the survey and printed the form. I think it's extremely valuable information and helps in the decision making process. It is very concise and I think very useful for patients who are new. Perhaps a little hard to understand for a newbie but a great place to start with your doctor.

I am extremely glad my CLL team did all of this testing before my first treatment, but that is why I went to a specialist. I will be sure to ask them to re-check when the time comes.

Thundercat

[bkoffman CLL CURE Hero in reply to Thundercat2]

Thanks.

[Lakeviewg]

This is excellent and concise information for the three key tests Brian! I downloaded the one pager and stored a printed copy in a paper file I keep for key CLL information, as well as in an electronic folder I maintain.

I had all three tests completed before my first treatment of Ibrutinib which I started on in March of this year. I recall my heamatologist telling me he would retest for the TP53 and FISH before I move to other treatments in the future. So I am happy to know he is on board with this already. But this is a great reminder for me to make sure the tests are redone when needed in the future.

Mike

[bkoffman CLL CURE Hero in reply to Lakeviewg]

Thanks

[sllincolorado]

From a survey professional perspective - excellent survey design. Easy to navigate and complete. Most importantly - brief and to the point.

[bkoffman CLL CURE Hero in reply to sllincolorado]

Thanks

[country76]

I wasn't treated before switching from Ibrutinib to Alacabrutinib. I have never been tested for TP53. I filled out the survey

[bkoffman CLL CURE Hero in reply to country76]

Thanks. If you chose a BTKi as first ine therapy, then one might argue testing is less critical.

[country76 in reply to bkoffman]

I think they should test for BS and TSH during treatment. Insulin and thyroid levels can possibly be affected by Ibrutinib.

[Hoffy]

Very important!

[gemit2000]

So my dr is recommending frontline VenG (Hgb went from 13 three mos. ago to 10). I found out the tests I'm taking prior to next week's visit are another CBC, Haptoglobin, & Coombs.

No other tests including FISH.

[BTW, Dx 2013, 13q del, mutated, w/ALC close to 100K; I've had no Tx & no CLL symptoms except small nodes for 8 yrs; 2 yrs ago had CABG surgery & take blood thinners, BP meds).

So I read the '1 pager' on CLLSociety 'Test Before Treat' site & listened to 4 or 5 experts speak on YouTube and feel what seems like the key takeaway is I should retest FISH & look for 17p del/p53 mutation.

But it seemed to me even if, let's say I were to find that my CLL had developed a 17p del, it would likely not change the VenG decision. I don't need a test to warn off of chemo, it's not on the radar. Maybe, tho', testing's still relevant for determining whether ongoing or fixed duration therapy is warranted or perhaps different dosages prescribed & different ramp up schedules if the genetics are different. Or maybe there's a chance the doctor would want to use A + O instead?

That's when I linked to 'Treatment Options for CLL From 5 Experts: An Online Tool' and input my data then set up a hypothetical where my I did acquired a 17p del and/or p53 mutation. In both cases the majority decision was still VenG w/ slight variations (BR being one that I disregarded).

Do I ask my hem/onc for a FISH. A medical professional & CLL patient (just ended V monotherapy resulting in MRD negativity) said not only FISH but FISH from a BMB.

But I'm know thinking no matter what the test results VenG seems where I'm headed

(unless the CBC shows Hgb @ 10.0 was a blip or a blipp'n error.

[maybe rather than put this question out there as a reply to you, I post it for all too; better chance at timely response & that's absolutely no criticism of you. God knows how much you do for so many people. You are a very busy warrior! And we all thank you for that]

[bkoffman CLL CURE Hero]

Less important if going with a non chemo combo as del 17p or TP53 in my opinion should be treated with more than one therapy