Test Before Treat

[bkoffman]

We believe this might be our most important campaign ever- to get everyone tested before each and every treatment because our CLL can change over time, and then to make sure that everyone gets the correct therapy based on their predictive testing. To help in that regard we have provided a simple one pager to print out and share with other patients and doctors about the basics of predictive testing available here: cllsociety.org/2019/08/test... We also have an interview with Dr. Mato that outlines the sorry state of affairs in the community concerning appropriate testing: cllsociety.org/2019/08/ash-...

Much more to come. Let's makes sure everyone gets their best care.

Stay strong. We are all in this together

Brian

[JigFettler Volunteer]

Good Morning Brian! (UK time)

Interesting stuff.

By test before "each and every" treatment are you suggesting therefore, getting tested 6 times during 6 cycles of FCR?

Or possibly getting tested annually during a period of Ibrutinib treatment.

Further, by the same implication and rationale regular testing during watch and wait would be indicated, if certain marker changes might determine earlier treatment intervention.

Jig

[bkoffman CLL CURE Hero in reply to JigFettler]

Test before starting a new therapy, not each cycle of the same therapy.

[Red49]

Morning Brian...from 🇨🇦. I had testing done April of last year and was found to be Normal Karyotype with no deletions, it has been recommended I start treatment soon. Do I need to request another FISH test or would those markers remain the same since I have not had any treatment yet. I have had the other two recommended tests done in the last couple of months. Thanks.

[johnl]

We had a patient in my support group who's Dr was going to start treatment without any testing. We suggested he get a second opinion from a specialist we knew would test, but it dawned on me later that perhaps his Dr wasn't testing because he wasn't considering chemo at all and felt that therefore testing wasn't needed. I would still want to be tested.

john

[Zia2]

I’ve had mutation test twice w/o any results due to sample and my CLL specialist doesn’t use FCR any longer so it’s not that pertinent correct?

[bkoffman CLL CURE Hero in reply to Zia2]

Less relevant. Take a look at our pager.

[MelioraDay]

I would additionally recommend cytogenetic testing if available before starting any chemotherapy. I thought i had all the best markers with 13q deletion, mutated IGHV, CD 38 and Zap 70 negative. Before starting my first line treatment with Venetoclax i was found to have a complex karyotype which is a high risk marker. Chemotherapy would not be the best treatment with a complex karyotype.

[bkoffman CLL CURE Hero in reply to MelioraDay]

Complex karyotype is helpful to know, but is unlikely to be the major factor in determining therapy choice. Most folks aren't getting the big 3 tests. CK would be next on my list.

[DriedSeaweed in reply to bkoffman]

With repeated testing between novel therapies I am curious how much CK changes for better or worse.