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CLL Support Association
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CLL is gone!!!!

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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Rejoicing in your wonderful news!

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Good golly, do celebrate your new status Best wishes and keep us informed now and then of your new life and how it goes. We do like to hear good news from our members.

More power to you.

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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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Jeff,

Can you elaborate on this vaccine?

Jeff

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Thanks Jeff.

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Jeff, I have trisomy 12 and I am mutated. My cohort is on a 15 month fix duration.I still have to be another 6-7 months on I/V. You should really have Dr Keating add Venetoclax. Be well.

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Awesome news

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Great news, long may the divorce be permanent. Doctors are now starting to get a growing range of weapons to fight CLL as well as more detailed analysis of CLL personal profiles and prognostics. We are all heading in the right direction.

UK Sparky

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Fabulous news Today husband had follow up with hemotology oncologist and just as I was prepared to battle to keep husband out of treatment we got the results I had predicted hemoglobin 13.9 hematocrit 42.8 and white count 4.0. This was after one treatment with Bendamustine Rituxan to clear him enough to have an aortic heart valve replaced. Back in July his hemoglobin was down to 7.1 after treatment and he ended up with 3 units of packed red blood cells. Thank goodness I was relentless in not allowing a second treatment and today this was the result. Each case is unique. I wish you a long and sustained recovery. Live each day in happiness and make every minute count. There is a cure on the horizon for almost everyone if we have a bit more time!

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Fantastic news! Define to celebrate.🕺💃

Your post has given me so much hope as I am 10 days into my treatment with Ib + V.

Enjoy the rest of your CLL free life 🤞🙏💞

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Congratulations. Always nice to hear good news. I’m wishing you many many more years of continued good health. Enjoy and embrace life. Live to the fullest. God Bless you. 🙏🏻🙏🏻❤️❤️

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Fabulous news. I wish you a long remission and a joyous celebration.

Maureen UK

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That’s great news ...live life to the fullest xx

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💃💃💃💃💃💃 I’m so happy for you. I hope you have a wonderful celebration planned!

Pam

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Congrats on the divorce. I want to divorce my CLL also but not my turn yet. Have a great time. Enjoy being free once more.

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🎉Phenomenal news!! I am so happy for you! 🎉

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That great!,,,

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Thrilled to hear your success story!! How long do you need to continue with the combination of drugs?

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Thanks, another 6-7 months. 15 months total.

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Thanks again:)

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Brilliant news!

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Did they say if it is likely to come back or not??

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My oncologist Dr Choi believes it's going to be a very long remission in the worst case scenario. He's just afraid that it will take only one single CLL cell to relapse because our immune system for some reason is blind to CLL cells.

He said it will be a cure for sure when we have a way to train our immune system to recognize the cancer.

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Did he happen to say when that will happen? When our immune system can recognize the cancer?

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No but what he told me makes sense. I am sure that a vaccine or some super targeted CAR-T is being developed right now.

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Wonderful News!

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Congratulations! Enjoy your freedom!

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Well done Lamboman.

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What absolutely wonderful news! I'm so glad that you shared it with the rest of us. You give inspiration to us all. May it be permanent forever more!

Paula

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Such lovely news. So very pleased for you.

Peggy 😀

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magic news -im convinced there is merit in these new drugs ibrutrinib and venetoclax

and as dr firman say earlier treatment could have mrd much earlier , --but what a great thing to have happen -- im w and w so hope I have a time to await the uk getting into habit of these new therapies instead of chemo poisions cheers colin

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Excellent news!

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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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I attended a lecture at an LLS event where treating earlier was something they are looking at but it would be case by case because CLL is specific to each individual so there are more variables than just being on W & W. If my platelets continue trending down I will be looking at treatment in the next few years for my otherwise indolent CLL. Glad to get first hand results from someone with CLL on the new treatments. Thanks for sharing your positive outcome. I needed to read something like this today.

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Good to hear your news and definitely gives all of us hope. I have been on I now for 3 years. The scan last week is all good except that the big lymph node in the abdomen has only marginally reduced. I feel well otherwise with some off and on infections. I will ask if they can add V to the prescription on my next visit. Thanks again and enjoy the good times.

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Congrats it would be beneficial to hear experiences of long term use of ibrutinib and venetoclax!

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They are very encouraging data for long term use of Ibrutinib. I have no doubt the long term use data for the combination I/V will be even better.

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That’s great!

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wonderful news - and encouraging for us all

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Fantastic news!

☺️

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Well done you! Go and celebrate!

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What great news! Praying for you it stays gone!

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Very happy for you.

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Great news , have you got any numbers for the lottery can can use 👌

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WOOOOOOHOOOOOO!!!! :) :) :)

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Wonderful news! I am very happy for you.

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Great news! It sounds like this trial is doing very well. I'm so glad that you got these results and were able to celebrate last night. Here's to a long and happy remission for you!

Chris

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The BEST news! So very happy for you.

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