Jumping for Joy

[thompsonellen]

As promised, AmericanRonin's cheeky post has inspired this one.

I just finished my third week of ibrutinib (and third week off of travel to OSU's clinical trial which resumes next week) and I'm happy to report that I'm back to regular Ellen, i.e. Energizer Bunny with plenty of pep and energy.

I get most of my exercise from figure skating, and two months ago, I couldn't make it down one side of the rink (and a day later, ended up in the hospital for four days). I'm very grateful to be back to normal, and "jumping for joy" as you will see here.

youtu.be/Dn_JR6h-FPw(Not working as expected?)

I also scheduled to take a skating test I've been avoiding for years this Saturday in advance of starting venetoclax. I'm not quite ready for it, so chances are high I won't pass, but it was life affirming to sign up.

Ibrutinib isn't without its risks, but in my case, I am very happy to be free of the fatigue that I didn't acknowledge was as bad as it was until I didn't have it anymore.

[nvp815]

As I sit here this morning wondering will I ever feel like my old self again, your video brings me nothing but pure joy! I am thrilled for you Ellen. Wishing you continued success in your trial and in your skating adventures (Michelle Kwan look out!).

Nan

[thompsonellen in reply to nvp815]

Thanks! I hope you feel like your old self soon.

[PaulaS Volunteer]

Wonderful! Thanks so much for posting this, thompsonellen. Brought a big smile to my face!

You're so right that we don't always realise the fatigue is as bad as it is, till we don't have it any more! I remember feeling like that when I started on Idelalisib... Not that I went for a skating spree like you did, but my equivalent has been scrambling up mountains again.

Best wishes,

Paula

[thompsonellen in reply to PaulaS]

Nice! Keep climbing!

[shoshanaz]

Very hopeful and inspiring. I hope your health continues to give you reasons to jump for joy for a long long time!

[wroxham-gb]

Wonderful news Ellen. I do not think I could stand up let alone skate.

Good luck with the exam.

Best wishes.

Sue.

[Cllcanada Top Poster CURE Hero]

As we say in Canada... keep your stick on the ice... ! 😋

[Peggy4]

Brilliant! All I can do to even pick my feet up at the moment. So very pleased for you.

Peggy

[debs24]

What a fantastic video! 🙂

It's great to see how energetic you are and was fun to see Ronin's "poster boy" photos too - how fabulous to have such positive, inspirational, fun messages on the site!

Wouldn't it be great to see more photos/videos of CLLers enjoying life?!

Be well everyone....off to check out my photo collection to find something fit for posting! 😉

Debs.

[db601]

Fabulous! The Saran Wrap is still on you Ellen - you look brand new!!!

[thompsonellen in reply to db601]

That's so funny. BTW, they put press an seal Saran Wrap on me when I took a shower yesterday at OSU, lol. So it really was on me.

[db601]

LOL. Have you had the pleasure of meeting Dr Brian Koffman? His blog and new CLL website of his journey and treatment w Dr Byrd at OSU is a great resource. Easy to find in Google. Do you keep a local Hem/Onc Doctor in Phila?

I've been the road over 9 years - NIH, FCCC and now happily landed at Penn - Drs Adam D Cohen & Anthony Mato. Their staff is phenomenal and completely patient centered - the patient portal will get you email responses promptly.

Ex: my request to have Dr Rai of the Rai classification system (NY ) called to inquire about the use of Plaquenil for arthralgias was done within an hour! Dr Rai currently has a study using Plaquenil for CLL - which I learned from this forum) The answer was no - not suggested for treatment of the arthralgias while taking ibrutinib.

Love your attitude and sparkle!