CLL/Imbruvica question

I was diagnosed with CLL for the second time in 10 years. It is in my bones.... I have been taking 3 Imbruvica daily, and am experiencing some side effects... I no longer have the gastrointestinal side effects, but I am experiencing bone and joint pain and extreme fatigue... I was wondering if any of you were able to stop the Imbruvica after the first 3 month series of medications... I am going to have my next Bone Marrow Biopsy tomorrow, and I just wondered if the typical course of treatment is to continue the Impruvica or if there is a chance of a reprieve at the end of the first course...

8 Replies

oldestnewest
  • The current practice is to stay on Imbruvica (ibrutinib) for life or until it may stop working...

    Talk to your CLL specialist about your side effects, most will lessen over time.

    ~chris

  • thank you chris..... I appreciate your speedy response!

  • I have been on ibrutinib since February. In the beginning I stomach issues, dry eyes and I felt really out of it. Now I feel like I felt before taking it. Your side effects may resolve.

  • My doctor has me taking Plaquenil for joint and bone pain. It has been wonderful for me. Dx CLL 2002. Tx2011, tx with Imbruvica since 2015.

  • Stay with it, three years in and no symptoms except the brittle nails and they are a lot better, the muscle and joint pain went after about six months. It will be worth it, my levels are normal and I feel thirty years younger. No pain, No gain!!

  • Wonderful news...you keep my hopes up!

  • All good advice above.... I am almost reluctant to suggest the below. But I see it as an option if the side effects don't subside. It may or may not help. My suggestion is to take only 2 pills.

    Reduced doses do not appear to affect clinical outcomes. Most pts treated with doses < 420 mg/day maintained a dose of > 2.5 mg/kg/day and therefore adequate BTK occupancy. Weight based dosing should be considered in future studies and pharmacoeconomic analyses.

    abstracts.asco.org/176/Abst...

    A calculation I made for 120 pound women... Weight based dosing means only one pill is neccessary!

    Calculation:

    1 Kilogram = 2.20462262 Pounds

    2.5 mg / kg per day = 1.133980925950946 mg / pound per day

    120 pound women

    1.133980925950946 mg / pound x 120 pounds = 136 mg.

    This means one 140 mg pill of ibrutinib per day for 120 pound women….

  • It is important to talk to your doctor before playing around with dosages... compliance is important until you are advised to change by your doctor...

    ~chris

You may also like...