Was diagnosed with marginal zone lymphoma and I was treated with Rituximab with minimal response. Doctor adviced me to take Ibrutinib.
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@myla031, I'm tagging fellow members who have experience with ibrutinib, sold under the brand name Imbruvica, like @gg17 @northbay @bullwinkle @profrich @ckeys @gmack and @lel who may be able to share their experiences. You may also be interested in this discussion:
– I have very difficult muscle twitches on imbruvica. Any advice? https://connect.mayoclinic.org/discussion/i-have-very-difficult-muscle-twitches-on-imbruvica-any-advice/
Myla, when will you start the new treatment?
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My oncologist is trying to put me on their trial of the Acalabrutinib but if don't qualify she'll start me with Ibrutinib. So, I'm still waiting. But I read that Ibrutinib have lots of side effect . So I don't know what to do.
Hello, looking for some help and information. Has anyone started or have a history with ibrutinib 560 mg oral tablets? This will be my 2nd fight with B-Cell Lymphoma located only in my brain? This just showed up after my 3 months of clearance while being given chemotherapy for over a year with my other growth (only located in my brain). I'm so confused and extremely scared. Thank You to all who may be able to help me,
Hi Betty, I can imagine that you are confused and scared. It must be disconcerting that the lymphoma has returned and to start a new medication.
I'm tagging fellow members who have experience with ibrutinib, sold under the brand name Imbruvica, like @gg17 @bullwinkle @profrich @ejrquast
Betty, when will you start the new treatment? How are you doing?
I have been on Ibrutinib for over 3 years and will answer any questions
Can you share how the recurrence was detected? Was it the control MRI or did you have new clinical symptoms or the old ones coming back or getting worse? Like finding balance or worsening motor skills?
Hi Colleen, thank you for responding. I've been on Ibrutinib 560 mgs once a day for about a week now. I was also started on a high dose of steroids to help with the swelling. My thought process and emotions have been on a ride to Hell and back. I deal with intense need of sleep. I feel like I'm in a fog all the time. This I believe is from the steroids. They are now in the process of weaning me off of them. I'm just trying to take each day as it comes.
What indications are there not to qualify for Acalabrutinib vs Ibrutinib??
I am so sorry that you are experiencing major side effects while taking Ibrutinib and steroids.
I took Ibrutinib/Imbruvica for two years and two months and experienced many side effects, even though I was on a lower dosage. I’ve also had steroids and they effected me greatly. Hoping the gradual steroid decreased dose will bring you some relief.
Please know that we care and support you through this.
Ibrutinib for refractory CNS DLBC transformed from Folicular.
Treatment with Rituximab, HD methotrexate and cytarabine added later successful peripherally achieving CR but didn't penetrate Blood brain barrier. Brain involvement remained stable. Have been commenced on Ibrutinib. Does anyone have experience with this.
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