Ibrutinib

[flippingnora1]

I have been on Ibrutinib now for 3 months, and although my swollen lymph glands have gone down completely, at times I do not feel well. I get headaches and feeling sick every day for a while. I have spoken to my Haematologist about this, and he said this is the side affects. I will have to wait and see if it gets any better. Not pleasant, but better to stop the blood cancer, than worry about a few side affects.

[cajunjeff]

Many, if not most, ibrutinib side effects improve over time. So as long as they are not too bad, stay the course.

Another option, depending upon access and where you live, is to switch to acalabrutinib. Acalabrutinib is thought to be just as effective as ibrutinib but with less side effects. I switched from ibrutinib to acalabrutinib and have really no side effects worth mentioning. Ibrutinib raised my blood pressure and gave me periodic diarrhea. Even with that, ibrutinib was a very tolerable drug. Acalabrutinib just turned out to be better for me.

[flippingnora1 in reply to cajunjeff]

Yes, perhaps I might ask if I can change. I too get diarrhea, along with not feeling too well at times. Hasn't affected my blood pressure. Thanks for that.

[mrsjsmith in reply to flippingnora1]

Sadly as you are in the U.K. your next option may well be Venetoclax ? Not sure why but when I had the ‘ what’s plan B conversation ‘ with my consultant and is it Acalabrutinib he said no.

3 months is a short time to adjust to side effects.

Colette

[AussieNeil Partner Administrator in reply to mrsjsmith]

Flippingnora, as Cajunjeff and Colette have noted, 3 months is a short period for a maintenance drug that people are on for many years. We know from long term studies that other than blood pressure/cardiovascular effects, side effects keep reducing over time.

Neil

[zaax]

Are you on Allopurinol? As that did exactly that to me, apparently being allergic to it is quite common

[scarletnoir in reply to zaax]

I'm not sure if that's the cause here, but allopurinol knocked me unconscious and I had to go to A&E in an ambulance... I'm surprised that the possible major side effects are not, apparently, well known to medical professionals because they are not uncommon, as you say.

[ChattahoocheeBoy in reply to scarletnoir]

Was allopurinol for a non CLL issue? Thought it was a gout Med?

[AussieNeil Partner Administrator in reply to ChattahoocheeBoy]

Yes, allopurinol is a medication for gout, but it is also often used during the first few months of treatment to protect our organs from Tumour Lysis Syndrome. Without allopurinol, if there is a massive CLL tumour die off from treatment, this can overwhelm our organs' ability to cope with the release of intracellular chemicals from all the dying CLL cells.

Neil

[ChattahoocheeBoy in reply to AussieNeil]

Thank you Neil….never been mentioned to me! Glad to know this info!

[scarletnoir in reply to ChattahoocheeBoy]

As Neil says, it is commonly prescribed to prevent tumour lysis... I believe I was given a dose or two after chemo (I was a bit out of it then)... a while later, a blood test showed my urea/ureic acid a bit high, though not very, and the docs prescribed allopurinol - by which time I had clearly become allergic to it and crashed out.

My concern is that allergic reactions to this drug are not uncommon, BUT doctors by and large seem unaware of this. Although most people do OK on it, it can be positively dangerous for some of us:

"Stop using this medicine and get emergency medical help if you have signs of an allergic reaction (hives, difficult breathing, swelling in your face or throat) or a severe skin reaction (fever, sore throat, burning eyes, skin pain, red or purple skin rash with blistering and peeling).

Seek medical treatment if you have a serious drug reaction that can affect many parts of your body. Symptoms may include: skin rash, fever, swollen glands, muscle aches, severe weakness, unusual bruising, or yellowing of your skin or eyes."

rxlist.com/zyloprim-side-ef...

[Davidcara]

I would consider giving it another three months. Make sure to review any new medications that you may be on too. I have been on ibrutinib for well over a year, and the side effects are not to bad for me. Need to drink enough water to flush out the dead cells.

[flippingnora1]

thanks all, well noted.

[Muriellevh]

I had to stop ibrutinib, to much joint pain. I couldn't walk anymore. I started acalabrutinib 10 days ago. The side effects are less, so I work again.It is important to find the best medication, the one who suits you the best.

[country76]

I took Ibrutinib for 14 months and developed a long list of side effects. I switched to Alacabrutinib and was amazed how almost everything stopped within a day or two. I have been taking Alacabrutinib 17 months and noticed several months ago I practically have no bruising. I do have some fatigue however livable. I chose Alacabrutinib over Venetoclax because at that time it was thought the Ibrutinib family may help prevent the inflammation storm that makes Covid patients so seriously ill. However, it was debunked later. Venetoclax wasn't available to me when I first started treatment, or I surely would have taken it.

[Unglorious in reply to country76]

Why would you have chosen to take Venetoclax?

[country76 in reply to Unglorious]

Because Venetoclax is only taken for one to two years.

[Unglorious in reply to country76]

Can you still have the option to take Venetoclax at a later date? I am taking Ibrutinib and I am not sure if Venetoclax is available in Canada.

[country76 in reply to Unglorious]

Yes. They all have their side effects and depending on your own situation you may or may not get a break from drugs.

[narl]

Yes sometimes the side effects get better over time, mine didn't and I was mainly tired all the time so my doctor took me down to two pills and then after that down to one pill and it worked just as fine as the three pills At controlling and keeping all my numbers in range. But I eventually had to stop it after a year because the side effect raising my blood pressure and I was already on blood pressure medicine and gave me a fib, When I got the a-fib is when they took me off of it entirely. I have been on nothing now for a year and a half just back to watch and wait. Ibrutinib was my first treatment I've had CLL for 17 years. My neighbor started Ibrutinib around the same time I did for his CLL and he had the same fatigue problem and his doctor took him down to one pill also and he's been on 1 for about a year now and he still does well with it also. So if you continue to have problems I know they can reduce the dose.

[flippingnora1]

I only take 1 Ibrutinib each day

[MaxSmart]

Try drinking much more water to see if it reduces the side effects. If it does not then ask your doctor about Acalabrutinib or Zanubrutinib. These are very similar medications but generally with less side effects.

[moty3012]

hi. i am on ibrutinib for 3 years now. at the beginning i had severe side effects to the point of hospitalization.

the doctor reduced the dose to 2 pills a day.

after ~2 years my blood has "normal" WBC.

about 5 months ago i decided that the side effects are still bothering (broken nails and wounds) and reduced (my own decision) my dose to 1.5 pills (one week 2 pills and one week 2 pills).

numbers remain "normal". side effects went down considerably.

[flippingnora1 in reply to moty3012]

I have only been on 1 per day. Doctor weighs you to see how many suits you.

[mrsjsmith in reply to flippingnora1]

I only take one pill and it’s 420mg ! In the U.K. we used to take 3 smaller dose pills but then it was changed by the manufacturer to 1 larger. So you may be on the usual dose. It would be unusual, I would have thought to start you on a low dose. I was told weight was irrelevant to dose.

Colette

[flippingnora1]

Yes my dosaged is one 420mg Ibrutinib per day. I am getting sickness and headaches every day now. Do I persevere!

[mrsjsmith in reply to flippingnora1]

Personally I would persevere because 3 months isn’t long enough.There are lots of anti nausea medications so may be worth checking with your CNS or GP what to take.

Headache can be down to stress. Are you drinking enough water. I find Tiger Balm great for headaches but don’t get too close to your eyes.

Colette