Is anyone taking Ibrutinib (Imbruvica)?

Posted by myla031 @myla031, Mar 16, 2021

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?

REPLY
@colleenyoung

@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.

REPLY

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,
Betty

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@betnlar

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,
Betty

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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.

You'll notice that I moved your post to this exisiting discussion about ibrutinib (Imbruvica) that @myla031 not that long ago. Please see:
– Is anyone taking Ibrutinib (Imbruvica)? https://connect.mayoclinic.org/discussion/is-anyone-taking-ibrutinib-for-marginal-zone-lymphoma/

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?

REPLY
@colleenyoung

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.

You'll notice that I moved your post to this exisiting discussion about ibrutinib (Imbruvica) that @myla031 not that long ago. Please see:
– Is anyone taking Ibrutinib (Imbruvica)? https://connect.mayoclinic.org/discussion/is-anyone-taking-ibrutinib-for-marginal-zone-lymphoma/

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?

Jump to this post

I have been on Ibrutinib for over 3 years and will any questions
Bullwinkle

REPLY
@bullwinkle

I have been on Ibrutinib for over 3 years and will any questions
Bullwinkle

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Sorry, left out the word answer.
B

REPLY
@betnlar

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,
Betty

Jump to this post

Hello,
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?

REPLY
@colleenyoung

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.

You'll notice that I moved your post to this exisiting discussion about ibrutinib (Imbruvica) that @myla031 not that long ago. Please see:
– Is anyone taking Ibrutinib (Imbruvica)? https://connect.mayoclinic.org/discussion/is-anyone-taking-ibrutinib-for-marginal-zone-lymphoma/

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?

Jump to this post

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.

REPLY
@myla031

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.

Jump to this post

What indications are there not to qualify for Acalabrutinib vs Ibrutinib??

REPLY
@betnlar

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.

Jump to this post

Hi Betty,

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.

REPLY
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