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CLL - 77 yr old - treating with Ibrutinib

Hi, I'm Kenbikelaw

Started treating CLL with Ibrutinib 3 weeks ago. No side effects, just concerns over duration of treatment, cost, the long term effects and the daily reminder that I have Leukemia. Anybody want to talk?

  • Post #1
  • Thu Aug 24, 2017

I have been taking Imbruvica (Inbrutinib) for almost 16 months now and most side effects i have experienced are cramps (legs, feet & hands), rashes, increased anxiety, difficulty falling asleep and decreased appetite with subsequent weight loss.

  • Post #2
  • Sat Sep 2, 2017

43 years old taking Ibrutinib for 3 months. Fatigue is getting worse, joint pain, random stabbing pain in legs, can’t even remember simple things anymore. Doctor can’t explain joint pain or stabbing leg pains. Anyone else having these problems?

  • Post #3
  • Tue Oct 3, 2017
I'm RAYMOND J M., and I'm a survivor of Leukemia

I was diagnosed with CLL last September, I will be 73 next month, and I have been taking Ibrutinib (140mg once per day) since May ( less than 6 months). So far, no apparent side effects. My WBC count has fluctuated up and down twice and my last two readings 2months apart were trending down significantly. My initial symptoms included night sweats, fatigue, swollen neck and under arm lymph nodes. The fatigue increased initially upon taking the Ibrutinib but was much relieved by the end of the first few weeks of use. I have resumed a walking exercise program that I had abandoned due to fatigue before starting on Ibrutinib. Here’s hoping! Best to all.

  • Post #4
  • Wed Oct 25, 2017

44 year old female with stage 4 Luekemia taking Ibrutinib. I have been taking Ibrutinib for 5 months 820 mg. I have experienced dizziness, severe anxiety, fatigue, joint pain, memory problems, and random stabbing pain in legs. Oh, also weird radiating feeling going down legs at night making it difficult to sleep. Asked doctor and no explanation given. Discouraged because I have to take this medicine for the rest of my life doctor says. I wonder what the long term effects of this medicine is.

  • Post #5
  • Tue Dec 12, 2017
I'm Ronda, and I'm a survivor of Leukemia

I was diagnosed with CLL in February 2017. I changed doctors after my first visit. My doctor didn’t put me on Ibrutinib. I went from having plasma 1 a month to chemo. Hopefully the chemo will keep me in remission. I was told by my first doctor I probably wouldn’t have to have anything done for 10 years. No meds, no treatment or anything. I love my new doctor. I just can’t wait until my chemo is over. I have to work from home until I can go back in March.

  • Post #6
  • Tue Jan 9, 2018
Hi, I'm Barbara M O.

I am getting ready to start on Ibrutinib. Have had CLL for 12 years and have twice had chemo. Happy not to be having chemo but concerned about the side effects of this drug. Another option is to go to MD Anderson for a clinical trial using this drug with Venetoclax. Sorry to hear about so many having side effects. The only one I wouldn’t mind is losing some weight! Best of luck to all of you dealing with this cancer.

  • Post #7
  • Wed Feb 7, 2018
Hi, I'm Marilyn A.

Diagnosed with CLL/SLL in 2005. FCM-R in 2005. Remission until 2017. Began Ibrutinib in November and have tolerated well. In Ibrutinib/Venetoclax trial and so thankful for great strides they have made in the treatment of our CLL. My Dad had it and died in 1984. His treatment options were limited. I have a great local oncologist and a great CLL specialist. My former local Doctor abandoned me because she was not “comfortable” treating me while in this Ibrutinib/Venetoclax trial. (and, she was recommended as someone who treats CLL patients. lol)

We all must take responsibility for ourselves and definitely stay on top of all that is available to us. Getting a second opinion from a specialist is not a sin. You owe it to yourself. Best of luck to all! Yes, I have CLL, but I think of that as Can Lick Leukemia!!!!

  • Post #8
  • Sun Mar 4, 2018

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