Long term imbruvica users.....

[Beefcakesgirl]

Has anyone been on imbruvica for over 5yrs? Drs only seem to talk about 5yrs. They never mention anything beyond that. My bf has been on it with no side effects for 2yrs. We are starting to worry/wonder if this is too good to be true and the 5yr question keeps popping up. What happens after year 5? Out of luck? Stops working? People stop following with the oncologist? What Should we be expecting? If anything. Looking for some peace of mind. 💜 thanks. And thanks for letting me in the group!

[Rt2000]

Imbruvica was first approved for CLL in 2014 and for first line treatment in 2016. And there are people that started on trials before those dates. So most people on it probably did start in the last 5 years, give or take. What happens at 5 years? If it’s working, you just keep taking it. If it’s not, you switch to something else. I have been taking it for 3 years with great results, so I’m not worried.

[cajunjeff]

There is a study out there of first time users, I think only thirty are in the study. I believe they are 8 years out and something like 75% are still doing well. My doctor has someone nine years out.

When taken as a first treatment, my guess is the data will show at least 50% of the people on ibrutinib still progression free ten years out. I also suspect tolerance will be more of an issue than resistance.

My question to my doctor to my last visit was if resistance to ibrutinib is inevitable, or for some people will ibrutinib be the only drug they ever need. He thinks some of us will be able to use ibrutinb forever, but would not venture a guess how many. Some of us will become resistant, some intolerant.

My lay opinion is there is a high probability ibrutinib will still be working for your bf five years from now and who knows how long after that, maybe forever. He could take venetoclax of ibrutinib stops working, or add venetoclax to ibrutinib at some point and go for a deep remission, possible cure.

I am two years out on ibrutinib. I hope to add other drugs at some point and be cured. That said, if you put a deal in front of me today which guaranteed ibrutinib would never stop working for me with the side effects I have if I agreed to take it everyday for the rest of my life, it probably wouldn't take me long to sign that deal.

[Sierrastar in reply to cajunjeff]

Me too!! Elizabeth.

[Jm954 Administrator]

4.5 years of Ibrutinib and all is well, with MRD still reducing albeit slowly, slowly (yawn)

Jackie

[cajunjeff in reply to Jm954]

Boring = bad (for most things in life, give me the life roller coaster ride)

Boring = good (for most all things cll, give me the slowly getting better yawns every day)

My cll was in the roller coaster stage a couple years ago. I am very happy to be in the cll yawn stage with you, Jackie, at least for now.

[GMa27]

My CLL gal pal was on the trial and still on it doing well. This her 9th year!

[Jm954 Administrator in reply to GMa27]

Wooohoooo!!

[Beefcakesgirl in reply to GMa27]

Reading this made me tear up. 🙌 awesome report.

[GMa27 in reply to Beefcakesgirl]

It's so exciting to know someone that was on the trial. She got the last slot!

[PlanetaryKim in reply to GMa27]

Wow! 9 years! good for her!

[MsLockYourPosts Passed Volunteer in reply to GMa27]

I also have a friend who was in the original study. She is doing very well, also. We should all have her energy!

[SamanthaJane123 in reply to GMa27]

I think that's awesome!

[Hidden]

i unfortunetly developed resistance at 10 months

[Beefcakesgirl in reply to Hidden]

That’s heartbreaking. What have they offered you in place? How are you coping?

[Hidden in reply to Beefcakesgirl]

i;m on venclexta and i have perfect numbers on it. However the same issue for all these drugs persists.

Resistance can and usually will develop for many. However everybody is different.

length of time is different for all.

what i'm hoping is to get thru on current therapies enough to get to a form of Car-t.

there are several. i don't have any specific in mind . I've looked at several though.

You do have to fail at least 2 lines to get car-t on trial.

I developed my issue at 68.

[SamanthaJane123 in reply to Hidden]

That would have been disappointing developing a resistance after 10 months. Glad venetoclax is giving you good numbers. May that continue. All the best.

[flutterbye]

Hi Beefcakesgirl, I have been on Ibrutinib for over 5 years and doing well! 🤞😬

[BarbandChuck]

Hi, Beefcakesgirl, I am looking for similar stories !!! Thanks for posting!!

[francc]

7 years and counting. MRD positive. Playing pickleball 3 hours almost every day. Age 77. Dx 2000.

[Bobsterguy in reply to francc]

Great pickleball. I used to play racquetball. I try to go to gym but seem to get wiped out after some physical activity. Then need a few days to recover. I've gone to the gym all my life since age 20. I'm now 76. This wipeout fatigue seems to have begun in the last few years. Even today I think time to go to the gym. Any advice? Thanks

[francc in reply to Bobsterguy]

Can't think of anything I am doing that allows me my energy. I come home afterwards and do projects on my computer. I'm lazy that way for the rest of the day. I do a bit of babysitting for the grandkids and attend several groups during the week/month: a French speaking group, town meetings (about getting more pball into the curriculum), yoga at the Y, a walking group, a bicycle group in summer. I DO want to change my diet for the better. . . more veggies than my usual 2 per day. I think a lot of it is genetic for all of us, so relax and just do what you are interested in and enjoy whatever it is you CAN do comfortably. Life is too short to allow for worrying, which can actually shorten it! ;o)

[Bobsterguy in reply to francc]

Dear Francc, thanks for the feedback. Where do you live? I also speak very little French. Seems like we have some similar interest. I hope to get back to the Y soon. Thanks Bob

[francc in reply to Bobsterguy]

Gig Harbor, Wa. I go to the Y everyday for the stretching cage and PT. LOL.

[Berrytog]

Stop worrying unnessarily. I am in my tenth year and last week my three monthly check up showed all levels normal. I could add Veneoclax but what for? Best to leave well alone. No symptoms to speak of, will just keep taking my three pills a day and may pass from something unrelated.

[csellies]

I am in my second year, all blood count positive, still dealing with side effects but what the hell, I could be dead.

[micg]

Yes, i have for about 7 years. I was an early trail. At least for me and, in no way should you think this would be you, the drug started to lose its edge in controlling the disease. But I have a high risk disease. So now I am on both imbruvica and venteclax.. doing well. Lots of stuff around the corner with new BTK inhibitors that attack multiple pathways instead on one like imbruvica. So, I would not worry. I have heard of lots of people on imbruvica for the same and is still very effective.

[Beefcakesgirl in reply to micg]

I’ve just been so nervous because the oncologist we have really acted like he had no experience with imbruvica. He said it was mostly for ppl in their 80s who failed first treatments or who were too frail to try traditional. He really didn’t want to put Patrick on it. But I wouldn’t allow the “red devil”.

This is our second oncologist. The first was even more out of touch. So to even hear that there are other pills out there already with success stories makes me I terry cry with relief. I’ve been feeling like I need to learn as fast as I can because obviously the oncologist isn’t passionate enough to do so.

Now I’m feeling like we have a plan b if something mutates. Not having a back up plan is so scary considering how fast Patrick deteriorated the first time.

Thank you so much for your reply. 💜

[astefanovich]

Still working with good results after 5 years. (September 2014) Only issue is that Hemoglobin runs borderline for years now.

[jbctx]

Easy to say but you really have to find your way to a specialized CLL center.

I personally got through 3 doctors and 2 different clinics before finally landing in a place where I have full confidence.

[Beefcakesgirl in reply to jbctx]

Where are you from? We’re close to Erie Pa. we just felt so forced to make decisions fast that we were really treated like idiots for even wanting a second opinion.

Now we know that everything’s stable, I feel like we could “shop around” a bit. Of course insurance determine most of what we can actually afford to do 😕.

But yes, I do fully agree with you and intend on finding a specialist.

[jbctx in reply to Beefcakesgirl]

I'm in Houston and finally fortunate enough to have found my way to MD Anderson.

That said, as you are US based, you might try the CLL Society Expert Access service. If you qualify it is a video conference and free. I did this when I was trying to piece together my situation and it was a HUGE help. I spoke with a well known expert at Dana Farb in Boston who actually recommended the program that I ended up on in Houston.

HealthUnlocked was in fact the first and the CLL Society the second of my go to places for information on CLL.

I have provided a link below for the CLL Society. You can follow this to the Expert Access service also there you can find recommendations for experts by State. For Pennsylvania I noted 8 doctors. of those 5 are in Philadelphia. Whilst that location may not work well for you in Erie, I am not sure if the other 3 would be better choices.

Yes, I understand your concerns related to insurance, this was part of the problems that I had to work through but like you mention, if things are stable it a really good time to look at options in a positive frame of mind. When I finally took treatment I was spiraling out of control.......🤣

Link: cllsociety.org/

Hope this helps.

[Miller1960]

I get that it feels awkward to ask for a second opinion but essential for your piece of mind.

I'm now with a top specialist that's connected to the BC Cancer department at Royal Jubalie.

This was my third dr. In Canada your family dr. gives you the referral. My first dr was ok as she was all I knew, decided to go for a second opinion when I was told more treatment was in my future. My family dr referred me to a top specialist in Vancouver but a ferry ride or plane ride away.I loved her.

Third time lucky with a top cll specialist at one of the top hospitals in Victoria close to the city I live in.Love my new dr.

Good luck.

[Teddo]

If possible, it is recommended to have a reliable local oncologist/hematologist and a CLL expert to consult with at least once a year, someone who can coordinate with the local person once treatment is started. The Cleveland clinic has CLL experts, not so far from Erie. You may want to put out another post asking if anyone in your general area has an oncologist whom they trust and with whom they are comfortable.

[Beefcakesgirl in reply to Teddo]

I will absolutely start investigating the Cleveland clinic...thank you for your suggestion and advice. 💜

[DelrayDave]

I am now starting my 6th year on ibrutinib. It has kept the disease in check. At age 79 I may switch now to venetoclax and obinituzimab to get rid of afib and hopefully to get off of drugs altogether after a year. That seems to be another option now proposed by some docs. But ibrutinib has been a great drug for many years for lots of us.

[Teddo]

Brian Hill, MD, Ph.D. is the prominent CLL expert at the Cleveland Clinic.

[larrymarion]

I used ibrutinib for 5.5 years. last two years my blood levels were all normal and it looked like i had plateaued. side effects, including GI issues, muscle pain, thin blood, etc. led my hemoc and i to switch to venetoclax, hoping to get to uMRD after a year. i won't have data on my clinical trial of one until this summer.

most of the research data on resistance show that it occurs relatively early, like within 18 months of launching the treatment. note that ohio state and several other CLL centers of excellence have developed BTK resistance tests which can predict future resistance.

[Beefcakesgirl in reply to larrymarion]

I have so much to learn!!!

Thank you for replying. Are those resistance tests readily available that you know of? Are your numbers good on venetovlax? Side effects better?

[larrymarion in reply to Beefcakesgirl]

Resistance test only available at a few CLL centers of excellence. I travel to Ohio State's cancer research center where the phase III clinical trial of imbrutinib was done. I understand other CLL centers of excellence, typically research universities, also offer it to their patients. OSU has declined my request to make the test available to non OSU patients, unfortunately. Best to ask your hemoc about what he/she knows. If you're that concerned it may make sense to get a second opinion about your CLL diagnosis and treatment plan from OSU, and then getting the test while you're there.

Venetoclax has been amazing. My numbers were already very good from imbrutinib, but the side effects and other ibrutinib risks went away, albeit slowly in some cases (i.e., brittle fingernails may need another four months to get back t normal). My numbers have remained in the normal range, though i haven't had the MRD test yet. that's coming in a few months. My hemoc expects uMRD after a year of venetoclax following 5.5 years of ibrutinib, at which time i may stop treatment.