need advice from those who have been there

[Elizy]

My husband diagnosed june 2017 cll/sll,high risk mutations,started imbruvica ,july ,wbc was 95,000 ,started having muscle spasms painful but tolerable.December 2017 unbearable back pain to the point could not walk,ended up hospitalized five days,ct scan and mri only showed bone degeneration of spine not bad enough to cause pain,put on high doses of morphine,i believe imbruvica causing pain,was taken off treatment two weeks pain much better,doctor wants him to restart treatment,same dose,feels its the only way to go,anyone else out there same situation?Should be noted during original testing mass in lung also found thank god had not spread half off lung was removed Help please

[AussieNeil Partner Administrator]

I don't recall anyone else needing morphine for pain from taking Ibrutinib, but perhaps someone will reply, saying that they needed such strong pain relief.

With Ibrutinib, early research indicates that patients do best if they stay on the full dose, but some do fine on a reduced dose.

Neil

[tee10]

I'm sorry your husband is going thru this. I've been on Ibr for 15 months now. I also haven't heard of anyone suffering that much pain to need morphine. When I started I too had some side effects but nothing that I couldn't tolerate. Keep in mind we all experience different symptoms and some experience none, lucky them. My problem lately is bone pain. Mostly in my right wrist, right toe and left thumb. Some days more painful than other days, just weird. Let's hope when he goes back on it that things will get better and he won't have that awful back pain. You won't know unless you try. Wishing you both all the best.

[caven]

I'm far from knowledgeable about treatment supports, especially related to the pain-level you describe; however, I have read that the full Imbruvica dose is essential because this medication works to 'trip a switch' and is not beneficial in the graded way that some pharmaceuticals function (such that a small dose will help a little, and a larger dose a bit more, and so on).

It's my understanding that unless one reaches the optimal level for the drug to trip-the-switch then any lower dose will have no positive effect. So, to produce the positive impact it's either full-dose or no-dose. [Now it is the case that some people are started on half-dose for a week or two to temper the body and watch for side-effects ~ but, apparently, the therapeutic effect doesn't begin till the full-dose is begun.]

As always, I'm ready to be corrected by those with greater knowledge .... Elizy, we wish for you good outcomes in this journey you've both begun. Caven

[lankisterguy Volunteer]

For many side effects of Ibrutinib, both reduced dose and temporary pauses have been used. The good news is that if your husband's pain gets worse when he restarts, the drug can be stopped and the pain should subside again.

(My CLL expert doc had me stop Ibrutinib for 4 weeks to resolve a painful skin rash- and the pause did resolve the rash but restarting brought it right back so we stopped Ibrutinib permanently ).

There is some clinical data indicating that patients that never pause the drug do slightly better than those who must pause for surgery, side effects etc. But the consensus is that restarting the drug after a pause is still preferred to no treatment or other less effective treatments.

In the Phase 1 trials of Ibrutinib the theoretical target dosing was determined to be 2.5mg/kg to get 95% binding of the BTK sites. ncbi.nlm.nih.gov/pmc/articl...

If you do the math, a person under 122 lbs would only need 1 capsule per day and someone under 244lbs would only need two per day. But this assumes that the distribution of the drug and the cancer cells is uniform throughout the body, and they all get perfectly mixed together- nothing in the real world is that perfect. Thus some meta data clinical studies show that patients on 3 capsules per day do better than those on reduced dosages, and other studies can not see a statistical difference.

So most CLL experts still recommend the 3 capsules per day for all patients and only reduce dosage if the side effects are strong enough that the patient would not continue until the side effects became tolerable.

Len

[Bankergal]

I am caregiver for my sweetheart who was dx in 10/17 and has been on ibrutinib two months he has back pain all the time that makes him curse and groan. When he crawls into bed it makes him shout and curse. Our tucking-in ritual includes a half hour cooling down period while the pain subsides. We have talked about asking for pain meds but don’t want the drowsiness because he is far too sedentary as it is and also low energy precludes reading writing and composing which are his life. For now he is sticking it out at the full dose and it’s not easy to say the least.

[Hoffy]

I take later after dinner without food so it is max when I am sleeping.

Side effects can improve over time.

Venetoclax might be an option if pain can not be solved.

Be well.

[kimiD]

Hi Elizy. I have been on ibrutinib for 15 months now and have had to take 2 short (1week) breaks due to surgeries. I had some pretty significant pain in the full dose. My doctor at MDA lowered my dose to two capsules, then down to one capsule in November. I'm happy to say that my WBC is now hovering around 9-10,000 on just one capsule. The routine dosage of 3 capsules is what they thought was needed, but according to my doctor they are finding patients who do well on a lower dose. I do have to get monthly labs at this lower dose, with instructions to go back to two capsules if there are two consecutive months where my WBC jumps into the high teens. I would talk to your husband's doctor to see if a closely monitored dose adjustment would lessen the side effects while still remaining effective. Best of luck to you both.

Kim