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CLL Support Association
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47 years old, starting Ibrutinib this Monday

Hi all,

I am a 47 year old male, father of two who was diagnosed with CLL just about 8 years ago. I've been on Watch and Wait until my check up last Friday, where my suspicions of having fatigue and a sense of fullness in my left side were confirmed. WBC was at 108K and PET scan confirmed my lymphnodes nodes were swollen in my Neck, armpits and abdomen. Also I have an enlarged spleen. My Onc helped navigate my health insurance and my first batch of Ibrutinib arrives tomorrow.

I decided to wait until Mon night to start as my kids have a lot activities this weekend and since I'll be on this forever, what's a few days wait. Nervous about side effects, but have heard nothing but positive results. Anyone who wants to share their side effect stories (good or bad), is love to hear them so I know at could be coming. Thanks, David

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Hi David. I started Ibrutinib 9 days ago. No side effects so far. I am being careful to take it on an empty stomach and not eat anything for quite a while after, either. Taking it with food can double its potency, thus changing your actual dosage and producing side effects. Many people on this forum have commented that GI problems resolve or improve if they switch to empty-stomach dosing. So for me, I take it first thing in morning, while I am still lying in bed. Can't count on my stomach being empty at any other time, since I tend to eat and snack right up until bedtime.

Some people here report feeling fatigue after taking it, so they take it at night to sleep through the worst of the fatigue. I have noticed since Day 1 feeling animated and energetic after taking it. So that's another reason why morning is best dosing time for me. Everyone is different.

I also began taking 5000 mcg of biotin (Vitamin B-7) daily a few days before starting the Ibrutinib to hopefully dodge the nearly universal side effect of brittle, splitting fingernails.

Good luck on your journey!

kim

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Hi. Really? Taking it on a full stomach doubles the potency? Never heard of this before. Do u have written days plz? I know cranberry juice doubled the potency but not a full tummy

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See page 11 of this PDF: ec.europa.eu/health/documen...

"Absorption: Ibrutinib is rapidly absorbed after oral administration with a median T max of 1 to 2 hours. Absolute bioavailability in fasted condition (n= 8) was 2.9% (90%

CI = 2.1 –3.9) and doubled when combined with a meal."

.

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Welcome David,

I started Ibrutinib In January and it has worked amazingly well. I had the same symptoms as you have described and then some. My lymph nodes melted away during the first week on Ibrutinib. I now have a normal neck😌

Per my oncologist ‘s instructions, I take it on an empty stomach. I set my smartphone alarm for 8pm each evening as a reminder and drink lots of water to keep hydrated. I keep the levels of Ibrutinib as accurate as possible in my system. I’m usually in bed by 10-10:30 so if I should suffer fatigue or and stomach issues I sleep right through them. It worked several years ago during chemotherapy. I haven’t had any side effects at all, so it works for me. I also take biotin and have for several years.

Kind regards,

Sally (USA)

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Does it deplete the body of biotin? I am just curious why so many people are taking supplemental biotin on it.

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I started taking Biotin after a bad reaction to Bendamustine. I lost quite a bit of my thick hair and had skin issues. Not sure about ibrutinib since I have taken Biotin for years. Good question. Maybe someone else has the answer. Sally (USA)

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I should look into this more, but I think biotin helps body produce keratin, necessary for strong nails and hair. Maybe Ibrutinib alters or blocks body's ability to produce keratin...?

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Or maybe the addition of biotin (which helps keratin production) simply strengthens the nails against whatever weakening agent they are exposed to. So Ibrutinib may not be depleting biotin but simply weakening nails for some other reason.

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Ok. I finally looked it up instead of guessing. (haha ;) ) and it turns out... The scientists don't know why Ibrutinib weakens fingernails. From a study published in JAMA in 2016: "Hair and nail abnormalities are commonly associated with ibrutinib and appear several months after initiating therapy. Ibrutinib inhibits Bruton tyrosine kinase by covalently binding to cysteine 481. Whether ibrutinib affects the hair and nails by binding and altering cysteine-rich proteins of hair and nails or by means of another mechanism remains unknown."

ncbi.nlm.nih.gov/pubmed/269...

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Hi David,

It's great that you've got Ibrutinib as your first line treatment. This October is my 2nd year of Ibrutinib and despite the transient side effects, I would not change it.

The large LNs disappeared over the first week, liver and spleen followed suit pretty quickly so I was pretty pleased that it was obviously working. With the help of Rituximab the initial surge of lymphocytes in my blood was reduced and within a month my wbc of approx 600 was 52. My Hb started to rise again, fatigue stopped and I've never had a problem with low neutrophils or platelets.

Diarrhoea was and is still my main side effect. It's a nuisance but self limiting to the morning, after I've taken my Ibrutinib and I've learnt to cope/work round it and I don't take Immodium or anything else.

I also had terrible heartburn which was controlled by proton pump inhibitors but that disappeared after a few weeks.

Joint pain was initially excrutiating and would appear overnight, last 3 days and then go just as quickly. Mainly my hands and wrists but it was so painful and swollen that I couldn't use my hand to do anything during that time. This has reduced over time and now I can't remember the last flare up.

I'm also one of the 20%+ who has developed systolic hypertension and I ended up in A&E with a BP of 228/74. Now take antihypertensives and I'm fine but it took some time to find the right one for me.

Lastly, I put on about 10Kg in the first month, very fed up about that, and it's proved very hard to lose again.

For the best response it's important to take full dose Ibrutinib (all three capsules) and try not to have any breaks in your treatment, at least in the early days.

Here's a link to some pharma info about Ibrutinib: chemocare.com/chemotherapy/...

Everyone is different and your experience will be unique. The side effects are generally short lived and manageable, well worth the benefit. We're playing the long game here!

With very best wishes, let us know how you get on.

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Great that you are being offered Ibrutinib. I am a few years older than yourself and I have been on ibrutinib for 18 months, and within the first month, my very enlarged lymph nodes had returned to near normal size, I started to regain some weight, as I had become incredibly thin and my swollen legs also returned to normal. I take my dose at midday, having not eaten for 2 hours and I do not eat for 30 minutes after taking.The initial side affects I suffered were: petechiae, which I had on my legs, back and shoulders, this has calmed down and I still occasionally get it, but mildly. I do have an issue with my nails, and hair snapping, but this has also diminished in time, I find wearing surgical gloves whilst doing tasks and tape on my finger tips, helps. Diarrhoea also is an issue, when it flairs up I eat very bland food for a couple of days which I find helps. I also was very tired but like most of the side affects, they seem to diminish in time. I did find that is strangely got big bruises when I got stung by stinging nettles? Hopefully you will find that you will settle into a routine with the drug and that in time any side affects become milder.

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Hi David,

Welcome to the group.

I started Ibrutinib just 3 days ago, and found this article very helpful. cllsociety.org/2016/06/top-...

This one is also good, from a patient's perspective. cllsociety.org/2017/01/trea...

best wishes,

Paula

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I’ve heard the good, bad and ugly. Everyone is different. For me the bruising is the only issue I’ve had. You’ll do fine.

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Thank you everyone. Hard to imagine my spleen will be back to normal size in 2 weeks. As it is my t-shirts make me look like a beer belly:). The side effects will be what they will be, hard mental part is knowing I have to take Imbruvica every day for the rest of my life...

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Hi David,

I was a "lab-Rat" for an early Phase I Clinical Trial for Ibrutinib that I began in June of 2011. I was one of the data points that confirmed a correlation between Ibru and A-Fib for which I got a Pace Maker and AV node ablation in 2012. No problem since but a tough decision to make at the time as there was not a good alternative drug to switch to.

I had sinusitis just recently gone into remission and 3 winters of upper respiratory infections not part of my prior Ibru history which was remarkably free from any clinical infection. Pretty bad fingernail splitting only helped but not cured by 5,000mcg of Biotin. Dry eye almost got me booted off the Trial but successfully lobbied to a reduced dose early in the Trial to 280mg from the standard 420mg. Some abnormal bruising much alleviated by discontinuance of Omega 3 supplements. Some edema in lower legs and chronically low Platelets recently up a bit from several years in the mid 80s. I am also on a full 325mg Aspirin daily with no observed bleeding issues.

Ibru has worked steadily and slowly to reduce my CLL to a nearly undetectable level but leaving a small clonal well hidden population of cancer cells that appear to be resistant but contained.

With the good and bad - no complaints. I would do it all over if needed. the odds are with you for a good result and even better than mine.

WWW

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Hi David,

I have been on IB now for about 10 and I haven't seen any side effects as yet. But may lymph nodes have definitely decreased in size for which I'm very glad since they were starting to hurt at times. I hope that I can continue to progress with this kind of result but of course this is only a very short beginning. I hope it goes smoothly for you and please keep us informed of your journey.

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I've been on Ibrutinib for 13 months and have made steady progress - numbers going in right direction and scans look good. The first 7 months were filled with joint pain, muscle cramping and bruising. I didn't go on any pain meds but rather soaked in epson salt baths, dunked my hands in hot paraffin wax and rolled my aching feet on a lacrosse ball. I'm on 10,000 units of biotin for dry splitting nails and recently added a prenatal vitamin with folate as my nails have not been getting better. I've also had weird skin things pop up but they typically resolve on their own, Anyway, the good news is all these side effects eventually resolved and I've been feeling fantastic. I exercise 2 hours a day with weight training and pilates and average 15,000 - 20,0000 steps. Keep us posted - sending best wishes!

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David

I was diagnosed 2 years ago and was on W&W up until recently. I will be starting Ibrutinib tomorrow. I just turned 49 I have 4 young kids. I will try and share my results with you along this journey. I have heard good things about IB so I'm trying to stay positive.. I'm hoping I don't have any bad side effects either. Good luck... The goal is to some day be free of this. 😁

Brent

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best of luck and care to you Brent. Hoping you have a cll expert on your side with IB experience. be well-bill

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Thanks Bill. I feel I'm in good hands at MD Anderson here in Houston.

Best Wishes

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Perfect!

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Good luck Brent!

kim

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Thanks Kim you too.

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Hi! I have been on imbruvica for almost 2.5 years. Only side effect is dry nails and fingers but that’s easy to fix and easy bruising my nodes shrank very fast with this pill. Within 2 days. Drink lots of water. Good luck

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Hello there.I have been on this on the Flair trial for 2.5 years now had the Rituximab along side for 6 months.

It has taken 8 not very good Blood counts to within perfect normal range now.

Been fine, no problem at all really.

It gave me a headache when first taken.so another great peace of advice on here, was take it late at night and you would be asleep through it.

Still take at night, but that symptom only lasted a short while.

And bone pain which I took paracetamol for.

I have a glass red in the evening, never seems to affect it.

It gives great results (52 When treated)

Wishing you all the best.

( no Sevilla Oranges) 👍

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