What do you all think?

[578999lme]

Why? I am a white male 86 yrs old, and in questionably good health. I have been on Imbruvica for CLL for three years and stopped taking it on 5/28/2018 on oncologist advice. I have not resumed taking it to this date 8/28/2018. I had a blood series taken just last week and I was pleasantly surprised. What was normal on 5/28 the result was normal today. The reason for stopping the prescription was to determine if my recent memory loss (minor) had anything to do with the medication. I have noticed no change in my memory. So, we are forging ahead with no medication for the cll for another three months. I will report back, in the mean time I am happy with the cll report and the money I have saved!!! Leon Ellis

[annmcgowan]

Well done long may it last.

Ann

[Hidden]

Leon,

I don't mean to sound insensitive because I am not...I am mostly in awe.....you are 86...posting on the Internet....and worried about a little memory loss.....I am 52 and can't find my car keys unless my wife tells me where I left them. I can only wish to be so lucky as you at 86

Scott

[AdrianUK in reply to Hidden]

I’m 47 and I told my wife in the middle of a heat wave a few days ago that the summary of our financial expenses this month was for the whole of this month so far from 1 FEB to 24 FEB.... one of the scariest things about I presume cognitive fatigue is the way I get so muddle headed and lose words or make stupid mistakes these days. Oh and I also walk with two sticks and, having almost fallen over the last times I went to the hospital by tube, I have just been approved for hospital transport (oh my I can’t believe I even wrote that confession, makes me feel like I’ve lost another piece of dignity) ....I agree that all it all it sounds like Leon is doing incredibly well!

[JoyfulJessica]

I love hearing these happy reports!!

[MsLockYourPosts Passed Volunteer]

Some people dealing with "chemo brain" - yes it is a real thing- have been referred to a speach therapist and have reported that it helped with memory issues. Those on Imbruvica will have to tell you whether memory loss can be a side effect. Great report about your labs!

[Canuck901]

Excellent news , congrats hope the CLL stays away for a very long time

[Eric_68]

Looks like you are back to Watch and Wait Leon ... WHOO HOO ...

well done

[Fran57]

Fantastic news Leon!

It must give lots of people lots of hope to hear your story!

Let’s hope it continues this way.

My memory isn’t great these days - go to a room and forget why I’m there etc.- and I’m only 60!

Take care,

Fran 😉

[DanNordholm]

Short term memory issues are my biggest complaint about imbruvica. I now rely heavily on making Siri-based reminders on my phone. If I think of something I need to do I’ll immediately say, “Hey Siri, remind me to pick up deck screws at Home Depot on my way home from work at 5:30 today”. This usually works but sometimes between the time I think to make the reminder and the time I get my phone out of my pocket, I’ve forgotten what I was going to say.

I never had that problem before this med. I didn’t even have chemo brain when I was on BR a few years back.

[Hidden]

Glad to hear you're doing well!! May you stay that way and live to be in your 100s!!!!

[kathymac52]

Thanks Leon! You give us all hope of a long life!!

[cajunjeff]

Leon, when you write that your blood work was "normal" in May and then again three months later, do you mean that ibrutinib alone put you in a remission? Are you mrd negative if you know?

With ibrutinib being a relatively new drug, there does not appear to be much data for what happens if we stop taking it. From what I have read, they are starting to see some ibrutinib remissions with long term use, something like 15-20%. That percentage may grow with even longer term use.

I do not think they know what happens if we are in remission and stop taking ibrutinib. How long can we stop? Can we start back up if our cll comes back?

I would think the fact your numbers went to normal in just three years would be a good sign of a maybe deep remission for you.

Please keep us posted on your future tests. By the time you get to 96, they should have the can we stop ibrutinib piece figured out. Cheers.

[fromdutch]

That all depends from person to person, there is no guaranteed time, as with any medication.

I stopped with Imbruvica, after 3 years, and I am doing fine, normal bloodvalues en spotless lymphnodes as per my CTscans. ( I had CLL stage 4 )

Content in breach of Community Guidelines has been deleted - Admin

[Medabouhedi in reply to fromdutch]

Fromdutch, how long have you stopped taking the drug?

Did you make MRD test debore stopping ibrutinib?

[MsLockYourPosts Passed Volunteer in reply to Medabouhedi]

Dutch has only stated what he did and his response. Medabouhedi, ASK YOUR DOCTOR before considering any changes regarding YOUR medication, not someone on an online site. We are not doctors and are not here to give medical advice!

[fromdutch in reply to Medabouhedi]

6 months, after bloodtest WBC: 39 and CT scan, all lymph nodes clear.

After I stopped, my WBC went down to 6.8 ................

Great site: CLL society ( no censure there ) and please Google Professor Seyfried !

I wish you well.

Ron

[lankisterguy Volunteer in reply to fromdutch]

Dear fromdutch,

I am fairly certain that Dr. Furman would take strong exception to your suggestion of stopping Ibrutinib after only one year, without having achieved a CR and MRD negative in blood and marrow. I have discussed this strategy with him several times.

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The typical patient needs 5 years on Ibrutinib to reach a CR (Complete Remission) and MRD negative (negative for Minimal Residual Disease), but a few get there in as few as 3 years. Stopping Ibrutinib too early can cause the lymph nodes and spleen to enlarge quickly, so it should be carefully considered by a top CLL expert and for each patient.

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We should never be recommending a controversial/risky strategy to other patients, only a doctor should share medical advice like you are doing.

-

Len

[country76]

That's wonderful!! I wonder what the longest time has been to be off Ibrutinib??