Long time DX,SORT TIME TMT

[desti]

I was diagnosed with CLL in 1995. I’ve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. I’ve positive movement with my numbers and the splenomegaly. My nodes were minimally involved. My side effects have been undetectable. Given good response so far, Ibrutinib is being limited to 140 dosage. I suspect my age is being considered in tmt protocol. I am pleased to find this group of fellow travelers and offer my story in the hope that it may offer some solace to others.

[Jm954 Administrator]

Welcome desti!

Good to hear from you and that you are doing so well on Ibrutinib.

I hope you'll find lots of support and information here.

Jackie

[desti in reply to Jm954]

Thank you. I have found much in the way of support and comfort here.

[baq724]

Awesome that you were on w & w for 24 years! Since IB is your first treatment, you should do quite well on it. Hopefully it will take you in to your 100’s! Welcome!

[desti in reply to baq724]

Thank you for the welcome. I wonder if there is glossary available as so many of the acronyms and names are foreign to me.

[AussieNeil Administrator in reply to desti]

There is a post with references to a number of CLL related glossaries here: healthunlocked.com/cllsuppo...

It's in out pinned post section, which has lots more useful information. You can read them here:

healthunlocked.com/cllsuppo...

Neil

[desti in reply to AussieNeil]

Thanks Neil, will check them out.

[gillbale]

As I was only diagnosed on 3rd October this year and reading about how you were on watch and wait for 23 years has really given me a boost

You are an inspiration to us all

Take care

[Kokobean]

Welcome! Your many years without treatment is encouraging as are your results with ibrutinib. We would love to hear more!

[WinJ3]

Welcome Desti,

Thanks for sharing your story !

Win

[JC70]

Thank you for sharing your process. Yes, it is very encouraging. I am 77 and on W&W, diagnosed in 2013. I look forward to updated posts.

[Miller1960]

Wow 24 years on watch and wait, truly inspiring and encouraging. Good luck with Ibrutinib.

Miller1960