Dr. John Seymour on IgHV Mutational Status

[Edalv]

IgHV is one of the biomarkers used to predict prognosis and how an individual with CLL/SLL will respond to different treatment options. Watch our interview with Dr. John Seymour to learn more about how recent clinical trials have changed our understanding of IgHV.

youtu.be/354hNsHsSlc(Not working as expected?)

[Edalv]

That is the question… that’s why self education is so critical and sites like this one are so important… 🙏

[Big_Dee]

Hello Jammin_Me

Right-on, that is why it is so important to have a CLL Specialist on our team. My CLL Specialist is a professor at university hospital, and I would occasionally ask him if he had read so and so study. Sometimes yes, sometimes no.

[papayabirdy]

If treating w/a btki & venetoclax would the protocol be to start w/btki & add venetoclax or start w/btki & then switch over to venetoclax?

Thanks for posting that video Edalv!

[Newdawn Administrator in reply to papayabirdy]

The protocol is BTKi first to ‘debulk’ and reduce possibility of tumour lysis syndrome before introducing Venetoclax.

Newdawn

[papayabirdy in reply to Newdawn]

Okay. Thanks Newdawn.

I'm on my 5th week of acalabrutinib for debulking & asked my oncologist about introducing venetoclax after 2 months &

he said the combo isn't FDA approved yet & that he wants me to stay on acalabrutinib for at least 6 months and then stop it & do V & O treatment.

The reasons that I chose debulking w/a btki are because of NOTCH1 mutation & it exhibiting diminished CD20 &

also I tested IGG 149 some months back & am concerned about immune system suppression of obinutuzumab(though I am receiving monthly IVIG's now).

Also was concerned about debulking w/obinutuzumab w/a small, rural town hospital ER as back-up support and V& O being a brand new treatment here.

Have there been past Trials w/acalabrutinib first & adding venetoclax for dual treatment? My oncologist seems open to treatment combos that have been documented in Trials...

~jill

[Newdawn Administrator in reply to papayabirdy]

Being from the U.K. I’m not totally familiar with the clinical trials in the USA or FDA approval but there is this relevant trial;

clinicaltrials.gov/ct2/show...

Best wishes,

Newdawn

[Lilsa]

Thanks for this post Edalv,

So nice and somehow reassuring to see my CLL specialist, John Seymour on this video. He does explain things clearly doesn’t he?!

My concern is that although it is now accepted that if one relapses after a years treatment with say V /O the patient could be successfully retreated with the same combination, the reality is , in Australia at least, only the first round of treatment is funded by the PBS.

I am 8 months post one year of V/O and doing well with blood counts that are all in normal range apart from my immunoglobulins which are just a smidgeon below. I have not had an MRD neg test but am feeling very fit and well. Currently holidaying up at Noosa!

Keep walking!

Lilsa