Anniversary : Today is my one year anniversary... - CLL Support

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Anniversary

migirlusa profile image
17 Replies

Today is my one year anniversary on Ibrutinib. I had a little bumpy start but overall I have done very well.

My blood work is close to normal. My hemoglobin is still messing with me a little. The most important factor is that the fatigue is gone.

I want to thank all of you for your support and wisdom. I hate to think what would have happened without you.

Pam

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migirlusa profile image
migirlusa
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17 Replies
GMa27 profile image
GMa27

🎉💖👍

migirlusa profile image
migirlusa

Hi Scott

Well my energy returned within weeks of starting treatment. It might have helped that I had two platelet transfusions. Also very quickly I went back to walking.

I hope you pick up soon. Hang in there.

Pam

PlanetaryKim profile image
PlanetaryKim

Happy ibrutinib anniversary, Pam. so glad to hear your fatigue is gone. :)

kim

Jacksc06 profile image
Jacksc06

Hi Pam. Happy anniversary, Best wishes.

annmcgowan profile image
annmcgowan

Well done Pam.

Ann

PaulaS profile image
PaulaSVolunteer

I'm so glad you're doing well, Migirl. It's great that the fatigue has left you.

I've been on Ibrutinib for 20 months now, and like with you, my haemoglobin levels have been a problem. They are slowly picking up now, but they dipped to start with and took a long time to recover.

Wishing you all the best for the future ,

Paula

Rmjersey profile image
Rmjersey

Happy Anniversary Pam. Here’s to many more.

wiganfan profile image
wiganfan

Great to hear good news, hope everything continues well for you.

dmmck profile image
dmmck

Love hearing the good news!

Wroxham profile image
Wroxham

Good news.

Sue

Handley profile image
Handley

Hi and thanks for bothering to announce your anniversary. It's really encouraging to read about positive news - especially for those with some anxiety about their future treatment. I'm on day 17 of Ibrutinib and doing ok. I feel rather 'spaced out' on and off during the day, with a mild non-specific headache and can hear my own heartbeat rather like a tinnitus. Oh - and having lived for over 20 yrs in a hot climate, + most of my life on sailing boats, I have more than my fair share of sun damage - all of which is now becoming highlighted on my skin.

But I'm determined to manage it all and now working towards introduction of Venetoclax on week 9. All this brings me back to saying it's great to read of your good news one year on. Congrats and good luck!

Handley

migirlusa profile image
migirlusa in reply toHandley

Handled thank you. I still have occasion to hear my heart beat. Really strange isn’t it.

Best of luck!

Pam

deveritt profile image
deveritt in reply toHandley

I was re-reading posts I'd favourited and this stood put: "can hear my own heartbeat rather like a tinnitus" - I was diagnosed CLL in 2012 (13q del) and am still W&W but I've been experiencing this and light-headnedness for the last few months (which, as a life-long meditator I don't mind at all, or am used to).

Presuming the "hearing your own heartbeat" is something else, but wondering if anone else experiences this…

Garcar profile image
Garcar

That is great!

Big_Dee profile image
Big_Dee

Hello migirlusa

Thank you for coming back with your progress report. :) It helps all on this forum. keep up the good work, blessings.

Panz profile image
Panz

Thanks for inviting all of us to celebrate your anniversary! It is truly very special!!! May it continue for a good long time!

🙏☘️💕

carol_h profile image
carol_h

Great news! Happy the treatment is working well for tou! 😊

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