I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis.
I have had FCR when i was arround 26/27.
I gave me 2 years of no threatment.
Then it came back and i was place in a studie group for GDC199 (venetoclax).
Veneoclax worked well, but only gave me 1,5 years of no threatment.
We again did Venetoclax only this time i responed really bad to the medicine and had to stopp as i could not take it anymore. Also my kidneys took heavy blows.
Now they gave me ibritinub wich seems to do the job well. (only been taking it for 4 weeks now)
I know my CLL will come back eventually as it will defend it selve against ibritinib and wil become resisstant.
My question is: how is science doing with a new generation of medicine? I am really sacared that i have to do a bone marrow transplant when ibritinib stops working.
I really dont want to do chemo anymore, i even considering stopping threatment if no new medicine besides chemo exists.
Anyone here nows what science has been up to?
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JanAmsterdam
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There are a number of second generation, 'better than ibrutinib', BTK inhibitors coming to market.. like acalabrutinib, which we should see EMA approved this year. There are a number of others... but 2-3 years away.
I was on Zydelig (idelalisib) and rituxan, and it was great, after I failed Imbruvica (ibrutinib). A similar drug but again better, duvalisib, will see market this fall...
You need to look at clinical trials for combinations of drugs, in my view.
Due to your age, a stem cell transplant seems very reasonable, or perhaps the more experimental CAR T cell .
Jan, do not give up hope. I am a patient at MDA in Houston. Like Chris has said there are a number of treatments still available for you and many more to come. I can tell you that MDA is at the fore front of treatments for not only CLL but all cancers. I have been told by many a cure is near. You may even consider the CAR-T TREATMENT. They are making vast improvements in this treatment to counter the side effects of it. It can be a cure for many. As well as they are also making the stem cell transplant less of a challenge. Also there is the DNA VACCINE that is being looked into. Many, Many options compared to years ago. So hang in there. Where there is HOPE there is STRENGTH. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.
Thank you all for your replies! I know you are all in the same situation as i am and deal with the same sh*t i have been dealing with for 9 years. Its good to see there is new threatment coming. I will always remember my chemo therapie. Especially how heavy it was to undergo it and all the damage it caused to my body. I never want to do that again. And FCR is relativly 'mild' compared to BMT
In the end it is for all of us the same: stay alive till a cure comes. I wish you all the best and thanks for al the new medicine i can google on <3
First of all I am very sorry for you that you are confronted with cll at such a young age. I guess this is very extraordinary. I hope you have an excellent team of specialists who take care of you. I am also Dutch and to my luck I can be treated in the AMC in a study with Ibrutinib and Venetoclax (succesfully so far). Ofcourse the type of treatment depends on the profile of your cll type
(markers).are you a member of Hematon? There was this meeting for younger patients.
My heart goes out to you - I hate to see anyone get CLL, but I find it particularly difficult to accept someone so young having to deal with it.
As difficult as it is, do not give up. It is so important to get as much information as you can. Knowledge is such an important part of managing CLL. It makes all the difference in the world to know what your options are. As noted by Chris, clinical trials for combination drugs are definitely worth investigating. There is currently a lot of research and clinical trials going on for CLL.
As others have suggested, combo trials have shown better results than the same drugs individually. Included is Ibrutinib plus Venetoclax.
Venetoclax brought several people to the edge of death early in its first trials because it works to well and killed CLL to quickly, damaging both liver and kidneys. Is it possible that the harm you received was from this effect rather than from the drug itself being toxic to you?
I was started on Venetoclax last year @ 10 mg every other day to avoid any danger of tumor lysis. That standard dose is 400 mg. I had already been on Ibrutinib for some years. I am now taking them together outside of any trial. But my dose of "V" is far less than in trials.
If your oncologist thinks you may have had bad effects from V working too fast, you should also have some caution about your dose of Ibrutinib. As noted in this site some late studies have shown that it works well at about 1/3 or 1/4 the dose normally prescribed.
My oncologist has already been prescribing "I" at 1/4 the usual dose for a long time and getting full efficacy and he thinks he sees lower rates of adverse effects because of these lower doses. I was his first patient on I and when we started me on it, we experimented and started with much lower doses that normal to find out what I tolerated well and what dose was enough to work well. I proved to be even more responsive most people and was kept at a very low dose for a long time. After a couple of years of constantly reducing tumor load, I finally doubled my dose but it is still quite below standard.
If "V" working too fast for you was the cause of your issue, you might even discuss with your oncologist the possibility of later adding a minute amount of "V" to your "I" protocol. But you would want to wait until Ibrutinib brings you tumor load way down again so too many dead CLL cells are not loading down your vital organs.
Is it possible that the harm you received was from this effect rather than from the drug itself being toxic to you?
Yes. My first venotoclax threament (3 years ago) was easy peasy. I had little side effects as far as i can remember.
The second venetoclax threament started 3 months ago, and i had a WBC of 800-900.
So i think the argument of my docter was indeed to stop venetoclax as it killed the CLL to fast, and switch to ibrutinib.
The thing is, i could not take it anymore to be in the hospital everyday, being sick and having fevers up to 42 degrees celcius. I also ended up on the IC once and my kalium was doing weird things, letting the docs think i would get a heart attack. I also started to have infections. Since we where only at 200MG a day and i was already braking down, we never got to the full dose. Mentally i was already at my limit.
My plan was to wait until the WBC turned back to normal and maybe even wait till all the CLL is out of my nodes and marrow, and then ask if we can add venetoclax to the regime, as their is already a trail going on in the hospital that mixes the two.
Ik know Arnon Kater for a long time He was one of the first i emailed with questions about experimental threatments while i was still under threatment in another hospital (Antonie van Leeuwenhoek)
I brought up CAR T once but if i remember corectly his reply was somewhere like: That threatment still has many sideeffects.
I also brought up the ibrutinib/venetoclax mix studie.
I have to admit, all this threamtent over the years have not done me good in the head, and i havent been going to the hospital when i have should. So havent talked to the doc for a while, just escaped to another country. I went really bad on the last venotoclax threament (4 days a week in the hospital and continously fever every day above 40 degrees celcius)
So i havent talked to the doc for a month. But since i am running out of ibrutinib, i have to start calling.
I will bring up the ibru/veno mix again. Maybe i respond better to venotoclax when my WBC has turned back to normal.
My WBC was 800 when i started 3 months ago, and as said early'er, we tried a second time venetoclax and i respond heavely on it, thats why we switched to ibrutonib, and then i fled the scene, totally broken and havent had contact since. Thats 4 weeks ago.
My husband is mutated and on Ibrutinib now since last September. He’s doing great. Our Oncologist/Hematologist is very excited about this new Car-T treatment on the horizon. He says hubby will be here a long time.
hi Jan, I was diagnosed when I was 36. I had a stem cell transplant a few years later ( in 1999). Although my CLL has come back, it a much more stable and I have been on watch and wait for many years. It’s not all been plain sailing but I feel good in myself, allowing for a little fatigue and an aging body 😊.
I hope you can approach treatment positively when it comes. There are so many different approaches and treatments these days. It can be scary but I find living life as positively and fully as possible works for me. Make the most of each day and hope the Drs are guided to the best treatments for you.
Hi Jan, my journey seems similar to yours except I got the bad news at 43. I was wondering why is it that you stopped taking Veneoclax the first time around...from what I know it has to be taken chronically (based on current medical data), especialy if it is given as part of mono-therapy. I am now on Venetoclax myself going in 12th month (part of a 2 year trial but I am told I will have the drug available even if trial ends if it continues working)...
While it works great on me right now I am running all kinds of scenarios in my head and have pretty much same questions as you...
I can't imagine what it must have been like for you to deal with this roller coaster ride...I suppose you are prime example of a non-statistical CLL patient...I really hate hearing that this disease is a "best" cancer to have and that it impacts people 70 year and older given our age...but you at 23...really must have been hard...
Both ibrutinib and Venetoclax stopped working for me - I’d been at the full dosage of V since July, and just last Thurs. , 5/31, started another trial, ARQ 531, a different type of BTK inhibitor, w Dr. Flinn @ Sarah Cannon here in Nashville. I too sometimes wonder about just throwing in the towel, but then there’s always the “maybe this’ll be the one” thought. We’re also looking at CAR T cell down the road. Hang in there. Best best thoughts your way.
Hi there MelindaB - what is your treatment history and genetic disease profile? Wanted to learn more about potential paths leading towards developing V and I resistance due to those factors...
Best of luck to you in trying ARQ 531! Hope is it effective!
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He was one of the first i emailed with questions about experimental threatments while i was still under threatment in another hospital (Antonie van Leeuwenhoek)
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