Will I always be on Imbruvica?

[Dummer70]

Will I always be on Imbruvica?

[TimHB]

That's a question for your doctor but I've been told that I'm on it for the rest of my life, or until they develop something better (which is more likely). I've been told I can't stop it without risk of my CLL boomeranging back and more resistant to treatment. But I've heard from other people here that they've stopped it without consequence so who knows? We're all different. The person who knows what's best for you in your unique situation is your CLL specialist.

[Newchallnge in reply to TimHB]

I don’t think there is an answer yet ...but there are studies or Analysis taking place now to determine that. Let’s all hang in there until there is some supporting data!

[PlanetaryKim]

The basic concept with ibrtunib is:

Yes, you're on it for rest of your life,

OR until it stops working (resistance develops),

OR until you develop serious adverse effects and are forced to stop,

OR until a newer better thing is developed and your doctor suggests you switch to it,

OR until you & your doctor decide to add a second agent such as Venetoclax that could get you to MRD-negative, at which point you can halt treat and presumably hold your remission without drugs for some length of time.

I have been on ibrutinib nearly 14 months. I have had 3 short stoppages in that time. And each time I stopped, my CLL reasserted itself quite quickly with symptoms and falling blood counts.

kim

[cajunjeff]

Aside from being a question for your doctor, a little more information about your situation might help. I assume you are taking ibrutinib for Cll, even that is not clear. Just knowing how old you are would help.

In general, I think the answer is probably no to that question. There are all sorts of clinical trials going on now combining ibrutinib with other drugs. Once that’s gets sorted out, my guess is doctors will be adding drugs to ibrutinib to get remissions so people can go off therapy for a period of time.

I would not be surprised if within the next three years some version of ibrutinib plus venetoclax becomes the gold standard treatment for Cll. I am in ibrutinib now and my doctor has told me he will likely add something to it in the near future.

All that said, if ibrutinib works for the rest of my life, I am not complaining about taking it that long. A lot of people with other cancers and serious illnesses would love to have the option of controlling their illness with a pill a day.

[tsvieps in reply to cajunjeff]

As others have said, combos of things likely will lead to treatment breaks for many. I started on a small amount of Venetoclax in addition to Ibrutinib about a year ago. My WBC has stayed 8k to 15k during that time. 2 days ago it dropped to 5k.

I am both hoping and guessing that the Venetoclax has been slowly moving CLL out of my bone marrow and into my blood. After clearing most of it from the marrow, my WBC was able to drop as what is killed in the blood is no longer being replaced with more weaken CLL cells from the marrow. That is a good hope, but we will see what my next blood in a couple of months says.

I still have a handful of expanded nodes that I can palpate; I am definitely not free of CLL, but I am now only about 2% of my peak tumor load, and seemingly still clearing a bit at a time. I am not in a trial. I will be interested in what happens to those who are MRD negative in combo trials and are put in an arm that stops treatment. I have a very complicated protocol that has off label drugs and herbal supplements. You could say I am a trial of one. Ibrutinib has been part of my protocol for 4.5 years.

[Newchallnge in reply to cajunjeff]

Well said and great perspective cajunjeff!👌

[whitelily22 in reply to cajunjeff]

ohhh yes!

[Lola69]

Since I did 6 cycles of FCR and almost 3 years on imbruvica they may remove it 6 months ago doctors words. 2 weeks ago he said to continue on imbruvica. How long have you been taking it and have u had prior treatments ?

[bhayes84]

The reason for the current 'on it for life' is that Ibrutinib is that primarily (as I understand it) sweeps the CLL cells out of the lymph nodes and some out of the bone marrow but does not kill them (they just die off over several months in the blood stream). Hence there are always some CLL cells which then grow back.

[tsvieps in reply to bhayes84]

That seems to be why Venetoclax works well Ibrutinib and other BCR inhibitors. It seems to often clean out the bone marrow and Ibrutinib and friends clean out the nodes and spleen. CLL in the blood seems less protected.