CLL Support Association

My journey with Ibrutini 🏃🏻(Day 19)

It wasn't easy to swallow the first 3 capsules of IB on Aug 18th if it wasn't for the many postings & encouragements that I read from this site. A big thank you to all of you!!!

Noticed increase energy, less breathless & less heart pounding during bed time from 3rd day onwards.

Side effects of diarrhea subsided after first week, tiny red spots (petechiae) came & gone after a few days. A large bruise healed very slowly. Noticed some muscle aches & joint pain which I could ward off with medicated oil.... Nothing worse than the breathlessness that I experienced before.

Just received my blood test results today;

Hb has gone up from 9.6 to 11.1.

ALC went from 110.53 to 135.22

Platelets from 162 to 171

ANC from 5.2 to 4.79

I'm so thankful to my dear Lord for the increase in Hb, grateful to all those who made available the medication to me and all of you who answered my questions and shared your knowledge untiringly!!!

Seok

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Many thanks for posting.

Ernest.

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Most welcome!

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Hi Seok,

I'm so glad that things are going well, and hope that your condition and statistics continue to improve. I believe that we are so fortunate for the medical teams and the scientists in the development of Ibrutinib and the other incredible treatments now available and on stream.

Good luck as you move forward.

David

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Thanks David! Hope you be "cured" with venetoclax.... That's my hope too....

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That's all good and must give you encouragement to continue. Well done for hanging in there and your perseverance when you were feeling so low.

Things may get worse again but keep going..... it almost always gets better, eventually!

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Yes Jm954, noticed roller coaster effects from some of us here. Need to be cautiously optimistic and thankful for each good day. You've been a great companion in my journey, thanks again!

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It's been my pleasure.

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So glad you are doing well. Almost 9 months on Ibrutinib and I am doing great. My numbers have continued to stay within normal range and my energy level is terrific. No more bulky nodes. I pray all continues to go well for you also. Keep us updated. This is a great forum for information and understanding. Don't know what I would do without it. Blessings, Sally (USA)

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15 months now on Imbruvica and numbers are those of someone who doesn't have CLL. Negligible side effects.

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Thank you Sally & RJR1 for sharing your experience with me... 😍

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I hope your journey continues to be a success! Best wishes.

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Thanks Pkpayne!!

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Hope everything keeps on ok for you. My husband is due to start IB within the next couple of

weeks, as soon as the haemotologist has regulated his bloods with other meds. I read of the side effects and worry how I will cope with his symptoms (and moodiness) but it sounds as if you are doing so well I can only hope my hubby gets the same results as you. You are very encouraging.

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Hi fussybritches, I can fully appreciate what you & your husband are going through. Nothing beats being prepared mentally & emotionally. Just drink a lot of water, not sure if he is able to adhere to antidiatrhea diet of BRAT (bread rice apple toast) to keep diarrhea at bay for the first few days. Try not to delay the call of nature & be close to wash room for the first day..... I should have declined dinner invitation the second day as the food was oily and spicy. You are a great blessing to your husband; your care and concern are what he needs most. Stay strong with him!

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Glad you are doing well. I hear good things about IB.

Good luck,

BC

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Thx BC!!

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