CLL Support Association

10,914 members • 16,868 posts

CLL is gone!!!!

After living with CLL for 5 years. We have decided to divorce after she MRDed negative on my blood and bone marrow. Yes, I just got the best news of my life. I'm free again

I am still shocked with the results. I am on the 2nd cohort of the Imbruvica/Venetoclax trial for treatment naive patients. It's only been 8 months and the treatment has been a real miracle.

Now I am thinking of all of you. I know there will be a treatment that works for all of you. Stay informed and keep the hope high, that's winning 50% of the battle. Precision Medicine is evolving very fast with new cancer drugs, trials and treatments each year.

Once a CLL patient always a CLL patient and I know there might be a chance of relapsing at some point but I'll stay positive and will beat this again.

I'm going to celebrate and wish you all the best.

Be well!

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Chronic leukaemia

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cajunjeff

a month ago

Awesome news lamboman. No one really knows how long these I/V remissions will last. When I asked Dr Keating if he expects the I/V remissions to be as durable as the FCR remissions he predicted they will be longer. That’s quite a prediction given that some folks are out past 15 years on FCR.

I have a couple questions if you don’t mind sharing the information. What is your FiSH and ighv status? And what is the plan for your cohort as to staying on or stopping meds?

Congrats again. I also asked Keating what the backup plan would be for people who stop I/V and then relapse. He thinks we might be able to restart the same therapy.

I am particularly interested because I am on ibrutinib now and think he might add venetoclax and/or the vaccine for me next year. I see him later this month and hope to get some info on if there are any early reports on the vaccine trial.

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lamboman

a month ago

Thanks to all of you for your support!

I indeed had some fun celebration last night and I am still in recovering mode this morning.

I wanted to share the news because I remember how I felt when I was diagnosed 5 years ago. They said you have 5 years to live, there is no cure. Only FCR will get you to 5 years. I was ZAP70 positive and it was bad. Nobody even talks about ZAP70 nowadays. I was 50 years old and left with no hope.

I still can't believe how things have changed these past 5 years: Ibrutinib, Venetoclax, CAR-T, etc. Just think of what's coming up over the next 5 years: more targeted therapies, immunotherapy, CAR NK, a vaccine, a cure?

The sponsor of the I/V trial is now testing patients for MRD status earlier because they found out the combination is more successful they originally thought. That's why they tested me at 8 months in the trial. I can't wait to see new trial data presented in December at ASH 2018 in my home town San Diego.

And then we will never thank enough all the scientists who have worked countless hours to develop these new drugs. The same is true for the medical teams who run these trials. I am a big fan of UCSD Moore Cancer Center, Dr Kipps, Dr Choi and their team.

The one question on my mind right now is. Should we now bypass W&W ? I'm not a scientist but I think waiting makes the CLL stronger with chances to develop nasty clones. Knowing what I know and how effective the 2 drugs have been for me I would now start treatment as soon as possible and that's what I will do if I ever relapse.

I have a feeling this is going to be the next move after we get more good results from these combination trials.

For the patients who are just on Ibrutinib, you should probably ask your oncologist to add Venetoclax to your prescription. They can always prescribe drugs off label. There is enough evidence showing it works. I would not wait until the combination gets FDA approved.

Thanks again to all of you. You're next with an upcoming good news like mine.

Be well!

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