ASH2019 Interviews

[Debinoz]

Hi all - been a while since I’ve posted. I was lucky enough to go to ASH in December on behalf of Lymphoma Australia and the Lymphoma Coalition. Lots of interviews with so much hope for us - one of my favourites is this one with Dr Tanya Siddiqi on her CAR-T for CLL trial at City of Hope - if you watch this you’ll find lots more on our You Tube channel including ones with John Gribben, Constantine Tam and John Seymour which are all very relevant to us - enjoy!

youtu.be/l1kD1IBD-Yc(Not working as expected?)

[Murzik]

Hi Deborah! Thanks a lot for everything you are doing for CLL community.

Cannot play this video??!!🤔

But no problem, found on YouTube.

Best of all, G.

[Debinoz in reply to Murzik]

Apologies! Thanks for letting me know - I’ve reposted the link x

[Justasheet1]

Hi Deb,

It was wonderful seeing your post. Your interviews are always so spirited by being directed from a CLL patient perspective because of course, you are one.

I remember how much you went through in the beginning. Your angst for your children and then your travels that brought you to Venetoclax.

It’s wonderful to see you living so well and paying it forward once again and sharing the interviews with your insights to us.

Continued good health to you and your family,

Jeff

[Debinoz in reply to Justasheet1]

Oh thanks for the kind words Jeff - I remember you being there for me when I found healthunlocked in the early days too. Look at us - still here all these years later!

Sadly after 4 wonderful years on venetoclax (3 of them MRD-) I started relapsing on treatment last year and they gave me 4 cycles of Rituximab to try to regain control - that only lasted me 3 months and the decision was made to take me off venetoclax just before I travelled to the US for ASH. I was lumpy immediately after coming off and it was quite scary how quickly I became ill (this isn’t standard with venetoclax cessation).

I started ibrutinib two weeks ago and am doing really well. My doctors here have decided that CAR-T should be my next treatment - prior to the dreaded bone marrow transplant I’ve spent so many years trying to avoid.

I’m exploring options for that - will update my blog soon - not having had much news to report for so long has been great.

When I interviewed Con Tam my doctor who was also at ASH I asked him if we should outline the decisions we’re having to make about me now and in his wonderfully blunt way he said - no let’s keep it positive 😂. I am positive, have to be but must admit it’s scary being back to the grind of making these decisions. Thankfully my children are now 15, 13 and 10 (they were only 7, 5 and 2 when I was diagnosed) - the journey continues!

Much love to you and here’s to a healthy and uneventful 2020 x

[Justasheet1 in reply to Debinoz]

Deb,

The Venetoclax clearly was a great drug for you but the resistance and thus switching drugs or “whack a mole” course of treatment continues until there’s a cure for us.

I’m surprised that they discontinued the Venetoclax without overlapping it with the ibrutinib and then stopping it and avoiding the flare of your nodes.

Will the ibrutinib be used as a precursor to the car-t or will you enjoy the remission?

I remember how active your CLL was so it will certainly be tough. If you have Car-t, will it be done in Britain or Australia?

As for me, my regimen of BR lasted almost 5 blissful years. I’m now on ibrutinib a few months and doing great. The arthralgia is tough sometimes but the alternative is worse so I soldier on as we all do.

I see Dr Wierda again in July and will see what the “wizard “ has in store for my treatment plan. I retired from the fire department early and moved to the mountains. My wife who is a nurse, thought that she retired too but couldn’t sit still plus I’m her private duty patient 😂

God bless you and your family and please keep us in the loop with your decisions.

Jeff

[igawa26]

What a Great interview so many new treatments gives Hope to us all. Thank you

[Newdawn Administrator]

Thanks for this excellent interview and your personal update Deb. I often wonder how you’re doing particularly as I’m now on I&V and trying to reach UMRD. You’ve been the ultimate self advocate who found your own treatment path by circumnavigating immense obstacles and thousands of miles. You’ve now passed this on to others and continue as a CLL pioneer.

I seem to recall (but may be mistaken) that you have the 6q deletion. It’s one we don’t hear about much but it sounds like a really lumpy one.

Really wishing you well as you pursue the next round of treatment. Thankfully you’re well placed to access the very best advice.

Please keep us updated about you as well as the advocacy work you’re engaged in.

Newdawn

[Agiledog]

Thanks for your fine post, Deb. I remember well your story which led you to the U.K. and being pulled back from the edge. It was especially encouraging since the novel agents were yet to be approved, but still in trials. Had I been better educated when diagnosed in late 2011 I would certainly have done as you did and sought out a trial of the new drugs. But when I relapsed, your example helped me to know exactly what to do---head for a trial. I have just completed my 3 year anniversary visit to my NIH trial of acalabrutinib, still going strong. Your story and upbeat, engaging posts have been a tonic to me and your fellows on the road. So sorry to hear of your latest bump along the way. But it sounds like Dr. Tam and you are steering a good course. After receding into the shadows for a time upon the approval of ibrutinib and other novels, the advances in CAR-T management since then have been tremendous. Thanks for keeping us informed. Thinking of you and your family. Best, Bud

[Smakwater]

Hi Deb,

You are my CLL Hero.

It was your experience with venetoclax that inspired me most to learn about venetoclax and then participate in the obinutuzumab plus venetoclax trial. These drugs improved my life greatly and I am very thankful for you taking the lead.

It looks like we still have some work left to do. We all stand with you and thank you for everything that you do to advocate a better quality of life for those dealing with CLL.

We love you Deb,

JM