Remission -- Yippee!: My CLL relapsed last year... - CLL Support

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Remission -- Yippee!

Eagle5327 profile image
22 Replies

My CLL relapsed last year in a very rare form: presentation in the central nervous system, brain lining, and eyes. Partial blindness and localized seizures were some of the problems. Since this presentation is so rare, there is no standard of care.

My CLL specialist teamed with other specialists to create a customized treatment regime -- cytarabine (a brain cancer chemo) infused into my spinal column plus good old fashioned ibrutinib. Ibrutinib penetrates the blood-brain barrier and works in the central nervous system as well as peripheral blood.

Nine months later, there is no observable active disease in my eyes. Spinal taps and MRIs are negative. My blood numbers are now completely normal. I'm tolerating ibrutinib easily.

Last week, my specialist, Dr Bruce Cheson, told me I'm now back in remission. I'll stay on ibrutinib for as long as it's effective. The docs will monitor my CLL through bloodwork and observation of my retinas.

I'm ecstatic. That was a very scary time. No one knew at first what the problem was nor what to do about it. Now I'm allowed to drive again, back at the gym, and feel great. Quality of life is excellent. Wahoo!

Many thanks to all of you on this list who supported me at the onset of my rare presentation, especially Chris of CLL Canada. You're all wonderful. Thank you for being there for me and for each other.

Geoff

Washington, DC

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Eagle5327
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22 Replies
Susiecarer profile image
Susiecarer

Great news Geoff, so pleased for you

Susiecarer

Mystic75 profile image
Mystic75

Wow! I am thrilled for you, Geoff, and can only imagine how ecstatic you must be! This is also so encouraging for others, where treatment for CLL is especially challenging. Your story is really stunning and makes me feel so good. I am so happy for you!

Congratulations!!!!

D.

DaleFL profile image
DaleFL in reply to Mystic75

I cannot agree more. This is awesome news. 🙂

fell profile image
fell

Wow, Jeff! Amazing journey and fabulous news!

Wishing you all the best,

Fell

KL2018 profile image
KL2018

Most excellent news!! Thanks for sharing. I soak in every bit of encouragement I can.

Newdawn profile image
NewdawnAdministrator

Oh wow Eagle and now you’re definitely soaring high. What fabulous news!

Best wishes,

Newdawn

cllady01 profile image
cllady01Former Volunteer

Words fail at such a stupendous recovery. (and yet, she persisted)

You have to be ecstatic, and I imagine your case is one for the record books with the Drs. themselves feeling pretty good also.

Long may the Ibr. keep you well!

Sepsur profile image
Sepsur

Great news, sounded very scary

UK-Sparky profile image
UK-Sparky

Delighted for you Eagle5327!

Emcee1 profile image
Emcee1

All the best Geoff!

annmcgowan profile image
annmcgowan

Great news eagle thanks for sharing it.

Take care and enjoy

Ann

Ohannie236 profile image
Ohannie236

Geoff, so glad for your remission! Sounds like you've really been through it and have stayed strong. Hope all continues to go very well for you. Prayers from Ohio.

Sushibruno profile image
Sushibruno

👍👍👍👍I'm so happy for you Geoff!

Ohannie236 profile image
Ohannie236 in reply to Sushibruno

Sushi, hi! I like to see your smiling photo. (-: I just got my port yesterday and will be starting FCR. Hope all is going better for you. Prayers from Ohio.

Sushibruno profile image
Sushibruno in reply to Ohannie236

Thank you so much ohannie, good luck with the fcr i wish u all the success in your journey. Question how come you're doing fcr and not starting on ibrutinib or another med.

Ashmom profile image
Ashmom

That’s fantastic news, Geoff! Thanks for sharing.

Ash

EugeneL2 profile image
EugeneL2

Congratulations! So happy for you.

Your results are beyond amazing. Continue to soar like an eagle 🦅. Sally

JR1964 profile image
JR1964

Eagle way to go, start living life!! Wonderful!! CLL tried to take a bigger part of you but you fought and denied it. Always great to hear these stories and inspiring to the rest of us. STAY STRONG J.R

terryI_uk profile image
terryI_uk

Great news Geoff, long may it continue, God bless, Terry

BeckyLUSA profile image
BeckyLUSA

Great news and Congratulations!

jaysearch profile image
jaysearch

FABULOUS!!! Thank you for sharing - This gives all of us a boost.

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