CLL and Ibrutinib

[DylanPxxx]

I have stage 4 NHL, CLL/SLL. My original diagnosis found it in my liver and spleen and found three tumors in my abdomen. That sounded like a lot to me at the time but since then I’ve had a spinal tap that found cancer cells in my spinal fluid and on Tuesday I had a lung CT scan which should two tumors in my lungs. The news just keeps getting better and better.

My oncologist wants a PET scan before I start treatment so he has an overall baseline of where the cancer is. the PET scan was delayed by two weeks while we battled the insurance company, who didn’t want to pay for it. Now the PET scan is scheduled for Friday and I start treatment on Friday.

My treatment is Ibrutinib —420mg a day (forever). What side effects should I expect? Also, is it better to take the Ibrutinib first thing in the morning or last thing at night?

Advice appreciated

[Shar0n Volunteer]

Hi and welcome! Can I suggest that you join the CLL Support group here on Health Unlocked as well as this one as they are more knowledgeable and have many more members who can give good experience and information on that topic.

The members here are dealing with a variety of mainly indolent non- hodgkins lymphomas (including some with CLL diagnosis) but you might get a quicker and more specific response there.

Here's the link to that group: healthunlocked.com/cllsupport