Imbruvica CLL

[Tchapman]

I've been on Imbruvica 420mg for 14 days and switched to 280mg because of the side effects been on the medication for a month altogether and feel really terrible most of the time is this normal for people? I've also had loss of appetite and of course tired to my core. Will this get better over time? Any advice would be greatly appreciated! I was really hoping to feel better after starting the medication.

[Thundercat2]

Hi T,

I was in a clinical trial with Obinituzumab and Ibrutinib. I received 6 infusions of the Obin and started on 320 of the IB. I stayed on the IB for about 4 months but had to come off because of side effects. Maybe you could ask to try a lower dose, they did that for me, unfortunately I still couldn't tolerate it. We went to the lowest dosage possible. I actually came off everything and enjoyed a 15 mo. remission. But WBC is going up again (which was not unexpected since I wasn't on anything) and I will be switching to something else.

Rest assured that there are many options for you if you can't get comfortable with the Ibrutinib. Is this your initial treatment? There is Acalabrutinib, Zanubrutinib, and Venetoclax all very good treatments. And from what I hear even more things on the horizon.

Perhaps a discussion with your specialist is in order. I do know that it can take quite some time for the side effects to dissipate. It can be several months and everyone is different.

It's hard not to be frustrated but please don't despair. It takes time to find the right fit for everyone.

Best wishes to you!

Thundercat

[Rosee3 in reply to Thundercat2]

I was on imbruvica . The only side effect was bruising. I was eventually put on Venetoclax which I am still taking 100 mg. No side effects with this one except fo me bruising. My WBC is 5 so I will just have to grin and bare the bruising. Since everything is looking good, they took my port out

[Thundercat2]

Sorry I meant 420 of the Ibrutinib as my original dosage. They took me down to 140 per day but I still had to come off. It has also been mentioned that depending on your weight and if you are male or female might effect what your dosage should be. Again, a discussion you may want to have with your team.

[Maloncll]

My wife was on 420 mg of imbruvica for 4 months. At 135 pounds. , I think she was overdosed. Extreme muscle spans and pain. New Dr took her off the drug for observation . Bedridden now for 90 days with 2 fracture vertabrae.the drug affected the bone marrow. Her blood test today after being off the drug this long, are better than when she started treatment. Remission or still the effect of the overdose drug?

At least, reduce your prescription to 120 and see. Serious stuff

[Tchapman in reply to Maloncll]

I did get reduced to 280 seems better right now anyways. I will know more on Tuesday if its working or not.

[KneeHurts]

I've been on ibrutinib and venetoclax for a different type of NHL. Have had some nasty side effects (the worst being back pain, knee pain, and subcutaneous nodules) but they have all been transitory. My disease is responding well to the treatment.

My understanding is that there can be a wide variety of side effects and that each patient's response is somewhat unique.

Have you had any tests done yet to let you know if you are benefitting from the treatment?

[Tchapman in reply to KneeHurts]

I will know on Tuesday if it's working.

[sphexx]

I’ve been on ibrutinib 420mg for nearly 4 years. Apart from my platelets plummeting in the beginning I have had no side effects that I can associate with the ibrutinib so I can’t really add anything.

[dooner6]

Ive had same problem w/ Imbruvica since I started. Intense med to say the least - zero energy as well. Going on 3 years...

[narl]

When I was on it I started in a February and in July they took me down to two pills a day the doctor asked me did I feel better since I started taking it or worse? I said I feel worse I'm tired all the time I went to two and my accounts dropped just as fast as being on three, then later on they took me down to one and I did fine on one. I ended up stopping a year later because it gave me a fib. That's been over a year and they haven't put me on anything else yet my numbers just now a little bit above normal. My neighbor across the street was on it also and he had muscle aches and pain so they dropped him to two also, they can lower your dose.

[2016miniman]

Hi.. two weeks maybe to soon to make a change.. give it a little more time. I was on this for a short time myself and found reducing the dose helped some. I feel your pain! I’m starting my 6th different med today.. praying it will make a difference. Good Luck!