How long does ibutrinib still working for 17p ... - CLL Support

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How long does ibutrinib still working for 17p patient?

Cgr2018 profile image
9 Replies

How long does ibutrinib still working for a 11q and 17p young patient? My brother started in july 2018 his monoteraphy treatment for a relaspsed cll with ibutrinib, and works well this months. His levels in analytics are un normal levels in febrary, and he looks very healthy, practice sports, weight gain, ....but im always very affraid if ibutrinib fails, and he relapse. It Will be some years from know, despite he is 17p?

Thank you very much!!!

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Cgr2018 profile image
Cgr2018
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9 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi Cgr2018,

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It is difficult to predict how long Ibrutinib will help your brother. Each CLL patient is very different, and that is why our doctors monitor us - usually every 2-3 months to detect signs that the drug has stopped working.

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I'm not certain what country and health system your brother is under, but I suspect a Spanish speaking country. In some countries there are other new targeted drugs like Venetoclax / Venclexta, Obinutuzumab/Gazyva, and/or Idelalisib/Zydelig that can be used if your brother relapses while on Ibrutinib/Imbruvica.

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I have been treated 6 times with 4 different NON chemo drugs and now doing extremely well on Venetoclax. Ibrutinib was the least effective drug for me, but many people I know well have been taking it successfully for up to 7 years.

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Len

Cgr2018 profile image
Cgr2018 in reply to lankisterguy

Thank you so much for your response! But do you think ibutrinib may still working for a long time? He is just 9 months with ibutrinib monotherapy and the last results were ok

lankisterguy profile image
lankisterguyVolunteer in reply to Cgr2018

Ibrutinib may work well for several years. There is no way that even the best CLL experts can predict for a specific patient. As we say in English "only time will tell".

I hope your brother has a long complete remission on Ibrutinib.

Len

Cgr2018 profile image
Cgr2018 in reply to lankisterguy

Thank you so much!

Cgr2018 profile image
Cgr2018 in reply to lankisterguy

Thank u! Im from Spain. I feel with anxiety, a lot, about this situation

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to Cgr2018

You might want to read some of the information on cllsociety.org, in addition to posts here from people doing well on Ibrutinib. If you look at the section here called Related Posts

(on the upper right side, or at the bottom on phones) you will find other posts from people posting about Ibrutinib.

I think it's harder for family members and friends, than it is for patients, to deal with CLL and the treatments. Spain seems to have many of the newer treatments available, so if your brother needs something else later he will have other options. Try to focus on the fact that Ibrutinib is working very well for patients who have a 17p deletion. If you are positive it will help your brother.

Cgr2018 profile image
Cgr2018 in reply to MsLockYourPosts

Thank you very much for your support!!!!

Hoffy profile image
Hoffy

I am 17p deleted and did a combo of imbruvica plus Venetoclax and was able to get to MRD negative. Venetoclax could be helpful if imbruvica stops working.

Be well,

Hoffy

Cgr2018 profile image
Cgr2018 in reply to Hoffy

Thank you so much!!! Hope you still doing so well for a long long time!

Best regards!

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