Anyone taking Ibruvica ?: I'm seeing a lot of... - CLL Support

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Anyone taking Ibruvica ?

12Caine12
12Caine12
77 Replies

I'm seeing a lot of bad side effects with Ibruvica. How many on this site have been taking this Rx for a few years or more w/o major/moderate side effects? Thanks in advance.

77 Replies
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PlanetaryKim

Hi 12Caine12. I have been on Imbruvica 2 years and have basically no side effects. I have been on reduced dose most of that time, Am currently on 2 pills a day (280 mg). Many people have minimal side effects on Imbruvica. But they don't post. I would say don't be afraid of trying Imbruvica if you need to start treatment and that drug is being offered to you.

kim

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12Caine12

Thank you!

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Sushibruno

Hi Kim, how did u feel for the first time before treatment. It's one of my biggest fears.

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PlanetaryKim

Hi sushibruno! :) I'm not sure I understand your question - Do you mean how did I feel right before starting treatment? Or how did I feel at the very beginning of ibrutinib?

At the very beginning of ibrutinib, I had some problems that I believe were due to the ibrutinib. I developed sore back within first 5 days of ibrutinib. And that became an intractable back muscle spasm that was very debilitating for 3 months, requiring opioid painkillers daily and physiotherapy. I had never experienced anything like that before or since. It did not seem 'normal' for my body. This is why I dose-reduced my ibrutinib (with my doctor's knowledge) after the first month. I have not had any problems since.

I have since read several other forum members describing back pain after starting ibrutinib. In my case, I think I probably strained my back. And, without the ibrutinib it would have just been slightly sore for a few days. A normal reaction. But the ibrutinib intensified it to full-on back muscle spasm. That's my theory. No proof one way or the other.

I have not had any other issues with ibrutinib that I have noticed.

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Sushibruno

In sorry Kim, i meant right before starting treatment, your very first treatment.

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PlanetaryKim

I was extremely sick with CLL before starting treatment. I had been hospitalized briefly for febrile neutropenia a couple months before starting treatment. I was transfusion dependent, severely neutropenic and anemic, very weak, my marrow was 95-99% infiltrated. Definitely high time for me to start treatment.

They started me with a single cycle of FR-lite (low-dose on the F) in August 2017. But it didn't improve my numbers or health at all. And they could see I had almost no functional marrow so did not want to give me more chemo. So they switched me to ibrutinib in September 2017, and I have been on that ever since. I improved very quickly on ibrutinib.

kim :)

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PlanetaryKim

The moral of my story is: Don't wait until you are as sick as I was before you start treatment. It will be easier on your body and your future health, if you can halt the CLL progression with treatment before it gets as far as mine.

Is your doctor telling you it's time to start treating?

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Sushibruno

No, no treatment yet I'm just having allot of anxiety that i can't shake off nothing is helping me and I'm trying to fight this feeling of despair. It's damaged me psychologically... I'm seeing a therapist but it's only been 2 sessions so far. I wonder is ill ever get better.

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PlanetaryKim

Anxiety and despair can be very rough. I hope the therapist can help with that. And I'm sure everyone here has told you that CLL is not a death sentence. It's a treatable condition. You can actually expect to normal life with treatment (if you ever need treatment).

I believe there will be an actual cure (or permanent remission) discovered in my lifetime. We may be there already with the Venetoclax combos. Just not enough years of data yet to know if the results it is delivering will be permanent for people.

I sure hope the therapist or someone/something else can help you with the anxiety. Hugs! <3

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Sushibruno

Thank you so much Kim, I'm fighting my fears and im not giving up, thank you. I just need to take it one day at a time.

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chief1fan

I don't know how your faith is in God, but try this: take it 5 minutes at a time and every positive 5 minutes, you thank God for something, even if it was a bad 5 min.. You will find your spirit lift and you won't believe how much you have to be thankful for. It takes practice. I have been on Ibrutnib for over a year now. Having a hiccup right now, but God is working with the medicine, I believe. Good luck.

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chief1fan
chief1fan
in reply to chief1fan

I also went through the CLL website and signed up for a second opinion online before I started. The doctor online basically agreed with my oncologist.

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Sushibruno

Thank you this means allot🙂

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PlanetaryKim

Have you tried something simple like Ativan to take the edge off anxiety? I use that from time to time. It's not right for everyone, though.

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Sushibruno

My psychiatrist gave me hydroxyzine. It calms me down a bit.

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Fulart
Fulart
in reply to Sushibruno

I too had hydroxyzine prescribed to calm me. It worked for awhile, however within a month it was severely constipating on my system and my primary care physician advised me to stop taking it. Not everyone will have this effect, and I’m only mentioning it to suggest that you drink plenty of water throughout the day. I probably did not drink enough.

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mrsjsmith
mrsjsmith
in reply to Fulart

Hydroxyzine seems to have several uses. I was prescribed it for itchy skin. I take one at night and I find I sleep much better now.

Colette

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Sushibruno
Sushibruno
in reply to Fulart

Thank you for reminding me to drink allot of water with this med. I was wondering why she said to do so.

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tedrog
tedrog
in reply to Sushibruno

i went 3 months deciding: no thanks. after 4+ years monitoring (160+wbc) some of the markers, not worst, maybe second worse, CLL side. (dasatinib/CML), and i have CLL too.

1.5 years now. at first? absolutely no adverse side effects, indeed, i felt better.

(the guy was trying to give me imbruvica (imatinib). went to specialist > reviewed previous dr results > oops! missed the CML!

CML is treat now, not W&W.

next question: was imbruvica right drug if also CML? NO!!!

dasatinib has “some” beneficial(?) effect also on the CLL.

still tired, weakish, some skin stuff.

all “minor.” but at first 6 months? heck i’m not sure anything would be that. no, no problems. easy.

ymmv

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Sushibruno
Sushibruno
in reply to tedrog

Good luck to you tedrog with your treatment. I wish you well👍.

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Doremefasol

We all have those. Shake them away with yoga or daily walks.

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gardening-girl

Greetings 12Caine12, 4+ years on ibrutinib with my only negative side effect being splitting fingernails and occasional mild bruising. I haven't experienced any joint pain, intestinal or heart problems.

gardening-girl

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12Caine12

Thanks!

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zaax

18 months at present there seems to be a different thing each week. last Week a big rash down a thigh - though I might have been bitten on holiday. That quickly went with the help of Hydrocortisone. This week tremors in right shoulder. but these are only minor. So yeah, apart from these minor things doing well.

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BarbandChuck

Chuck has been on imbruvica for about 18 months. The first six months were kind of bumpy but it's smooth sailing now and his numbers are close to normal. His only ongoing side effect is daily diarrhea which he can control with OTC stuff if he needs.

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Splashes

On Imbruvica three years. Side effects? Well, after being told I had 3 weeks to 3 months to live, my blood counts were normal 2 months after starting imbruvica, and they have remained normal. I feel fabulous. My hair curled a bit and my nails split at ends and will not grow very well, but I heard curly air and short nails are stylish. Anxiety sets off cancer, so make an effort to relax and trust God. I have full energy and a zest for life. I am 71 years old today and celebrating that I was not to see my 70th birthday, and here I am. I wrote a book called Praise the Lord and Pass the Chemo: A Hopeful Response to a Hard Reality which has helped many cancer patients find joy in their diagnosis.

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Santoshax
Santoshax
in reply to Splashes

So happy you are still here and happy birthday for 6 days ago

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Pawin

I've been taking Imbruvica since Dec 2017. 3per day for 17p del CLL. Minor side effects: puffy ankles, mild diarrhoea, skin heals slowly (taking up to a year for some scrapes). On the whole, pretty minor.

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Suzan28

Hi

I have been in ibrutinib for 5 days now with varying tolerable side effects - slight nausea, mild dizziness, headache, tiredness, lack of appetite, etc. Like you 12Caine12, I had concerns about starting treatment because, like you I had read how horrible the side effects can be for some people- to whom my heart goes out to.

Counselling and anti anxiety medicine are useful but another option can be calming relaxation meditations and/or hypnosis. . Our local cancer charity offers hypnosis to people experiencing anxiety about their diagnosis, treatment, etc. I know this will seem a bit ‘out there’ for some people but An experienced therapist can reduce anxiety significantly in one session.

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Fulart
Fulart
in reply to Suzan28

I used to have terrible anxiety about flying. I went to a therapist known for helping with self hypnosis techniques. I just had two short sessions and then given tapes for listening afterward. The results were pretty amazing to me. The anxiety didn’t completely go away, but it became quite manageable. Currently I’m using an online Mindfulness App. Last week a nurse told me “you just went totally Zen on me” - she said this right after she’d given me a blood pressure test. The reading was 122 over 69. I’m learning that my mind can be my best friend ... or my worst enemy. I’m working to keep it in my best friend category.

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Sushibruno
Sushibruno
in reply to Fulart

This is so true we have to fight against our negative thoughts, which is what I'm doing right now.

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Berrytog

We are all different and clearly some do have side effects which are meaningful to them, whereas some sail through ignoring any side effects and thinking more of the benefits.

I started eight years ago triggered by AIHA having to have blood transfusions etc., to get me on the course. I was grateful as after two weeks I felt normal and anxiety did not come into it as I had far more important things to worry about than my own health issues. I continue to feel normal with normal blood levels, a little bit of AF which is of no concern and brittle nails which I could rectify if I felt inclined.

I suppose, on reflection, as we are all different, we expect different things from the treatment. I am just happy to be still here feeling normal and grateful for the treatment that has given me my life back. We are not here for ever but a good span of useful life is all I ask. Provided aches and pains to not hamper normal life I am happy.

I am now seventy four, just had two new hips and spend my time as a carer for my wife who is now bed ridden therefore a quality life is not possible but we have some good memories.

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deveritt
deveritt
in reply to Berrytog

I am currently taking steroids for AIHA (gradually reducing from 70mg, now 20mg and haemo back in range although platelets dropped) and will either have FCR, just Rituximab at first or go onto the FLAIR trial. It's always good to read of people's experience on Ibrutinib, which seems to vary quite a bit…

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fossicker

Their are side effects with any type of treatment.

I did read that around 80% of people have negiable /manageable side effects with IBRUTINIB.

Also in Asia lower dosages are used when the wbc has decreased to what they refer to as maintanace mode.

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pilantd

I started Imbruvica April 1st 2017. I started experiencing weight gain , curly hair and disintegrating fingernails by January 2018. Then about 8 or 9 months later I realized that I was continuation to gain weight and was experiencing hypertenstion and high blood pressure by December 2018. In July 2019 my oncologist suspended my Imbruvica treatment to see if it was causing my hypertension. What I've decided is that I need to lose the 30 + lbs I've gained since starting Ibruvica.

I'm reaching the crossroads of dealing with this disease and I'm kinda giving up. I don't know how long I want to deal with this uncertainty. It's just getting old....

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Fulart
Fulart
in reply to pilantd

No! Please don’t give up. Weight gain does increase blood pressure. I lost a lot of weight by not eating a full meal after 4 or 4:30 pm. I didn’t try dieting- too many failures with that. Also, I stopped thinking that exercise would make me lose weight. It will improve your blood pressure though. Please talk to your dr or find a therapist to help you.

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5454
5454
in reply to pilantd

Hang in there brother and don't give up .someone. Said to me that God may not remove our tests but that if we ask him he will make it bearable. I thank God for the blessings. There are lots of new treatments. They seem to be getting closer to a cure. May the spirit of our Father and his son our lord Jesus Christ be with you.

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wilhoitaz
wilhoitaz
in reply to pilantd

All of us learn that patience and with me steadfast belief in God will pull you through the long hard times---we are human yet we are magnificent......

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SunnyDowntown

Common: serious fatigue, dizziness, breathlessness, forgetfulness, low endurance.

Occasional: bruising, bleeding, hair loss, body temperature fluctuations, sensitive teeth, nausea

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mja511

Hi 12Caine12 - I started taking imbruvica in December 2015 when chemo wasn't working. The only side effect that I'm aware of is brittle nails. I work full time and travel like I've never heard of cll. I take 420mg, I'm 62, and have P17 deletion.

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VaCooper63-NY-USA

3+ years on Ibrutinib. I have had no major side effects from the drug but several minor ones. To me, they are well worth the positive results.

Virginia

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MonD

I was in low dose of Imbruvica and got terrible rash head to toe on day 9 of treatment. Stopped and just started Acalabrutinib. Fingers crossed. Day 2 in and have a slight headache.

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Bijon3
Bijon3
in reply to MonD

I too had a terrible rash on day 17 or Ibrutinib, am going to ask about Acalabrutinib when I go to oncologist tomorrow. Hope it does well for you. This is my first time in treatment and the Ibrutinib had counts going in right direction and lymph nodes receded immediately. Am anxious to know what they have to say. Good luck to you.

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MonD
MonD
in reply to Bijon3

Yes my first time on treatment too. Hope you do well!

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atblank

Hi 12Caine12,

I have been taking Imbruvica for about four years. Other than thinning fingernails and some fatigue, I have not had any serious side effects. It is working beautifully for me. I am so sorry that you are having issues with it.

Anne

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fish61

Hi guys , I am 81 , with CLL , triple bypass, many stents , pulmonary hypertension and a few other fun things , Been on Ibrutinib since 2012 .

The only side effects I have suffered were minor , it did the job , reduced my nodes and got my blood count close to normal .. fatigue was and is my only real side effect.I accept it and learned to cope with it ... fatigue may be from old age , don’t know , , I have never been 81 before ... but have faith and exercise as much as you can , enjoy life .. the product works for me , I highly recommend you give it a chance .

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BSMI
BSMI
in reply to fish61

Well said fish61! Ibrutinib is working great for me after 2 years & has fixed my blood counts & nodes.

I’m sorry that some people have had obvious direct side effects like afib, but think it’s hard to be sure that some other problems were caused by it or were going to happen anyway due to age or life in general.

In any case for me it’s been well worth any side effects I’ve experienced.

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2016miniman

Hi...I had some very dad side effect from Imbrutinib and had to get off it abruptly after only six weeks. The most troublesome side effect was Afib which very scary due to the fact I have CAD. Went to the ER where they did a number tests including 4 pharmacological stress tests. 8 hours after I came in my heart returned to normal sinus rhythm the Imbrutinib stopped.

Hope you continue to have good results and stable health.

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haposwald

Before stating wbc had doubled twinge in a 2 month period and I was very symptomatic nodes were vervinlarged with pain throughout the day. Dav said I could start or I could wait another 3 months I wanted to feel better and not get 2 sick before starting. Glad I started when I did. Side effects were ther only for first couple weeks blood pressure biggest issue so I take a pil for that now! If I could say anything about imbrutinib is try it and don’t sweat it and hopefully you’ll feel as good as I do after only 7 months! A little fatigue has returned but other than that I’m great!!

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12Caine12
12Caine12
in reply to haposwald

Thanks you!

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BeckyLUSA

I have been on it since August 2017. I am one of the unlucky ones. Bad diarrhea from day one, but not bad enough for me to want to stop taking it. The results are too good. Curly hair and splitting nails are my only other side effects. No weight gain for me, due to diarrhea I presume. I agree with Planetary Kim, do not wait until you get too sick before you get treatment. Any treatment you get is going to have side effects and the sicker you are, the harder it is going to be to put up with any side effects.

Good luck!

BeckyL USA

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12Caine12
12Caine12
in reply to BeckyLUSA

Thank you!

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tizhmslf

I've been Imbruvica since January. Started 3 - capsules, now down to one. No side effects except purple spots under the skin and chipping fingernails. No pain.

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fish61
fish61
in reply to tizhmslf

Wondered where those purple spots came from , so much else going on I never thought of the Ibrutinib ... dermatologist has me putting Tretinoin 0.1% twice daily , they are gone in a week .

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Gisygirl
Gisygirl
in reply to fish61

I have been on Imbruvica 5 years...all blood work normal except platelets go up and down but side effects include bruising, blood blisters in mouth, thin brittle fingernails, fatigue, and the area under my eyes is very dark...going to make appt with a dermatologist. The side effects are minimal compared to the good affects of the medicine.

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12Caine12
12Caine12
in reply to tizhmslf

Thank you!

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Irishgreek

Hi 12Caine12,

Hope you are doing well today! I have been taking Imbruvica for 19 months. One chronic side effect is anemia - fatigue and shortness of breath. I had a few spontaneous nose bleeds early on, but then they disappeared. My sleep was disrupted, but a dropper of CBD oil on the tongue every night cured that issue. Another, rarer, side effect was the impact on my heart. Recent studies show that Imbruvica can cause or aggravate heart conditions like AFib or in my case, excessive PVCs (premature ventricular contractions). My cardiologist and oncologist agreed to a test (at my insistence) a day before I was to have a heart procedure to cure the PVCs. I went off Imbruvica, and within two weeks all my PVCs had disappeared. I stayed off for three months, and then my White cells started to climb again, going up a few thousand every month I was off. So recently we decided to go back on the Imbruvica and see what happens. Hope this helps.

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Bijon3

Started Ibrutinib (3 pills a day) Sept. 5. Day 17 developed a bad rash over trunk and spreading rapidly. Took me off and will go back in tomorrow to find out what to do next. Side effects other than rash were loss of appetite, fatigue, hip pain ect. all able to handle. It was doing all the right things for CLL ( I also have 17P delition) lymph nodes down counts going in the right direction so am anxious to hear what to try now...lower dose or change? Lots of people have few side effects, everyone is different. Hang in there

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12Caine12
12Caine12
in reply to Bijon3

Thank you!

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wilhoitaz

This is to great extent an Imbru site- You are on unknown ride especially for the first-for me- 6 weeks.

Many people report dramatic results in first 14 days-often as I experienced great local bone pain-for me both shin bones flushing out bogies lasted 2 weeks then pain elsewhere for a few days.

Very often here pain is gain--I pray to God thanking him for my horrendous cramps--part of recovery--As the Tatoo artist said to me "Relax and enjoy it" .

As in any medical adventure if you are healthy except for CLL you will likely do well-just local pain--manageable--Today is treatment day 129 for me 3

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12Caine12
12Caine12
in reply to wilhoitaz

Thank you!

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Mldeterm

Husband is 6 months in and only having occasional heart burn, nothing major. I'd suspect the vast majority taking a daily pill with no issues are not posting about it so it may skew your view.

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CHUCKWORTHY123

I've been taking Imbruvica for perhaps four years. For the first three years the muscle spasms (legs, abdomen, shoulder were distrubingly painful. Many nights I woke up in extreme pain. Enough to make you go to the ER if you didn't know what it was. It was like baseballs suddenly appearing insode your body. Now they seem to have fairly well resolved and are only from time to time.

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cll2013

I took it for 3 years until afib event. No other problems during that time so was disappointed when afib occurred.

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Thebessttiiyretui

Almost 6 years. Minimal side effects.

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CoachG

Been on four months. The first 4-5 weeks were full of side effects that typically lasted a day each. The swollen feet and ankles were a longer problem. But then the body gets used to it and most of the side effects go away. The improvement in my blood work is beyond words like amazing. I have so much more energy and oxygen that I can exercise significantly. Before I started, I was short of breath walking up a single flight of stairs. Embrace it.

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kathymac52

Husband has been on Ibrutinib for 18 months: occasional joint pain, some gas tummy problems, a bit of a rash, but on the whole very manageable....and his numbers are trending in the normal range....and no flu or bad cold last winter!!Fatigue has improved and no fevers or night sweats. This drug has been a miracle for us....prior to treatment he had lost 25 pounds, no energy, large lymph nodes, enlarged spleen, neutropenic.....and his WBC was 160,000 and increasing every month....Try not worry, it can be a life changer.

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livinglifewell

Hi Caine, I've been on imbruvica for 5 1/2 years (having failed several other regimens) and I've had basically the same side effects from the beginning: muscle/joint/ligament pain, muscle spasms, diarrhea, fatigue, elevated blood pressure, and bruising which seems to be increasing dramatically in the past couple of months.

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12Caine12

I'm sorry to hear that. I hope the good out weighs the bad!

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livinglifewell

Absolutely! The disease itself is definitely under control.

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Hoffy

For me it was not nearly as bad as it appears from all the posts.

It’s different for everyone but overall the worst side effect for me were brittle nails and finger tips.

Be well,

Hoffy

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Suzan28

Hi

I hope these post have alleviated some of your concerns?

We can often get frightened by what we read regarding treatment but as you can see every ‘body’ is different and we are the lucky ones to have such amazing treatment available to us

Keep well x

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2tas

I am 78 and previously led a very active life. I was diagnosed with CLL in 2009. I was on watch & wait until jan. 2019 when I experienced a variety of symptoms including elevated WBC count (290k). Hemotologist in FL started me on Imbruvica 480 for two months, and I experienced most of the "garden variety" of difficulties including joint & muscle pain extreme fatigue, and basically stayed in bed for that period of time. Stopped the Imbruvica for a week & then went on to lower dosage, I think 220. Same results muscle & joint pain, fatigue etc. Stopped again though by now my WBC was at 40k. Returned to MA and started with DanaFarber my WBC was at 30k and after checking all my stats I'm back on wait & watch. I feel really good and have no fatigue or left over symptoms except splitting nails and that seems to be getting better also. I am very grateful for my present health. Oh also during my time in bed I was not interested in eating & lost 30 pounds which I've managed to hold at.

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miltion

I had muscle and joint ache. My hands swelled up, and I developed a rash on my neck and a little on my back. I developed high blood pressure after about 7 months on this medication. All the aches, rashes and the swollen hands lasted about 5 months. I do believe I am living a much better life taking this med than if I wasn't. It's a life saver.

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splashsplash

5 years on Ibrutinib and doing great. My Leukaemia is under control and I have lots of energy. The 'indigestion' in the first few months was caused by a cascade of white cells dying quickly and was resolved by drinking a lot of water to flush them out. After 4 years I started to get recurring chest infections. My consultant said this is common in 2/3rds of long term patients on Ibrutinib and I now take low level antibiotics every day and have no more chest trouble. If/when I have to come off this amazing drug, I'll wait for the Leukaemia to return and then hopefully go on to Venetuclux.

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dvd1955

I had a pretty severe side affect after about 6 weeks on Imbruvica. I was told about possible bleeding issues, but did not expect what happened. I had a baker's cyst burst on the back of my right knee. Because of CLL/Imbruvica the bleeding wouldn't stop. My knee area filled with blood and locked up tight. Couldn't move it at all, and I was in extreme pain. Ended up in the hospital for 5 days for pain management. It's now been 4 weeks since this happened, and I just went from using a walker to using a cane. I'm going to physical therapy twice a week and slowly getting range of motion back in my knee. My oncologist had me stop taking the Imbruvica right away.

After starting on Imbruvica, but prior to this incident I was having joint stiffness quite a bit. First in knuckles of my right hand, then left hand, and both knees. This was not painful, and only lasted a few days.

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