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!
Written by
lamboman
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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.
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.
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.
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
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!
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. 🙏🏻🙏🏻❤️❤️
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.
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
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.
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.
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.
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!
Hi, congratulations on your success. you seem to understand CLL. My husband is 62 and diagnosed one week ago . He has a heterozygote 11q ATM. All other mutations were negative. His monoclonal absolute count is 12,400. Platelets RBCs are good. How important is that mutation did your hem-oncologist tell you. His has a bunch of large nodes so looking more SLL than CLL-like. No bone marrow yet.
FISH said 11q ATM 76% of the cells . Said was more aggressive in some articles.
Spleen fine. How do I make sense of these prognostic factors like that mutation?
B2-microglobulin? CD38 was low 5% on flow. What did your doctor tell you?
First thing....don't worry about CLL. Mutations are not as important as they were 5 years ago. Treatments nowadays are magic. I freaked out when I was first diagnosed in 2013 and now I am CLL free after 8 months in a clinical trial.
What saved me was Ibrutinib and 3 months later adding Venetoclax. I heard 85%+ of the patients in the trial are CLL free regardless of their mutations. My bone marrow was 85% infiltrated. Now they can't find one single CLL cell.
Get yourself a CLL specialist and wait to start treatment until he says you should. By then the combination of Ibrutinib + Venetoclax will be FDA approved. But even if it is not, both drugs are already FDA approved as single therapies and your oncologist can prescribe them off label.
They are many other options should my CLL relapse; restarting the same treatment, duvelisib, CAR-T, and they will be even more options if it happens in 2-3 years. One of my friends with very bad mutations has been out of the trial for 12 months and he is still CLL free.
They told me in 2013 I had CLL with a fast progression as I was ZAP70. They gave me 5 years to live at the max and said CLL is incurable. I'm completely CLL free in 2019. I barely started to need treatment in 2018 when I started the trial.
Today I am more scared of dying from a plane crash than dying from CLL.
Fantastic. I+O+V might even be more successful. 19 months is a long time. I'm so far at the 15 months of I+V and just stopped all meds. I was MRD negative pretty early on at 8 months.
I was diagnosed with CLL in 2001 ,been on watch and wait,do not take any medication for CLL.3 yrs ago I was diagnosed with diabetes type 2.
On Metformin,to try and reduce this ,I cut my sugars and carbs.It didn’t make any difference to my diabetes.But my Blood readings for CLL were all in range,I did lose a lot of weight too much,so I have started to introduce more carbohydrates into my diet.
I see an Oncologist in Malaga,next appointment due November, so keeping my fingers crossed I can get the diet balance right.
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