Ibrutinib-day 1

I just started Ibrutinib treatment as a first line treatment. My first dose was yesterday and I feel like I've been hit by a truck. My body is aching especially my legs. Extreme fatigue, headache and diarrhea. I didn't have any of these symptoms before starting treatment.

Does anyone know if it is normal to get these side effects after the first dose? Also, I heard that some of these symptoms eventually go away. Does anyone know how long before (and if) they go away?

Thanks!!

15 Replies

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  • I don't know the answers, but am sending a virtual hug your way with hopes that the side effects will subside soon. Hopefully others here who are on the same treatment can provide insights on the details.

  • Thanks so much Shoshanz for responding. The hug is appreciated :)

  • So sorry to hear you are experiencing such a sudden onset of side effects. I would recommend calling your doctor. I don't know when side effects normally start, but it does sound to me like your response has been pretty dramatic. Are you drinking a lot of water to flush the toxins from your body? I also just started ibrutinb on Tuesday. So far I have not developed any side effects but have been drinking a lot of fluids. I was also given a liter of IV fluids at my doctor's office the day I started the medication.

    Wishing you all the best. Hope these issues resolve soon for you.

    Nan

  • That's quite a reaction, certainly contact your doctor... take the 3 pills without food, and see if changing the time of day has any effect. I found taking them at about 4pm reduced the severtity of the diarrhea...

    Also don't use any NSAIDS for the headache they effect platelet function and are often contra indicated on ibrutinib...

    Hope you get some answers and relief... hydration is important especially in the first 3 months...

    ~chris

  • Thank you so much Nan and Chris!!

    This is very helpful. I hardly drank water so I will drink lots today plus I will take them tonight without food to see if that makes any difference. I am a little better today than yesterday but still have extreme fatigue and pain in bones.

    Thank you both for your support! Much appreciated. It is comforting to have this kind of support :)

    May

  • When I began Imbruvica in August, CLL cells died so rapidly that swollen neck nodes were down within 15 hours. So many were rapidly sloughed into my lymph system that I had lymphedema - especially swollen ankles and stomach. I had a heavy (almost tingling) sensation in the backs of my legs - not pain. I chalked it up to lymph fluid build-up, and it went away after about 3 weeks when there were fewer cells to die and they weren't flooding my system. At three weeks, I was extremely swollen all over. Then I had a one-time burst of diarrhea that felt like toxic waste purging. It felt as if all the lingering dead cells were gone. Indeed, the next morning, my distended stomach was down, and my urine stream was stronger because enlarged nodes were no longer pressing on my bladder. After that, there was considerably less lymphedema.

    Each of us reacts differently to meds. I've heard of others with extreme fatigue, as well as headache and diarrhea as bodies adjust to the state of dying cells. I have been really lucky and have felt only increased energy. May you get there.

    You will likely be going for labs soon. If these symptoms persist, do mention them. And if you get a strong pain in your legs - different from diffused aching or heaviness - let your doctors know, as blood clots can occur with this drug.

    You should read the protocol for Imbruvica, with the list of side effects: chemocare.com/chemotherapy/... You should also be drinking at least 8-10 glasses of water each day so the dying cells can more easily be processed through your kidneys. Hopefully, your doctor shared this info with you. Fluids might help with the diarrhea.

    Good luck. Hope your body allows Imbruvica to do its thing with few side effects.

  • Thank you for sharing your story with me. It gives me hope that it will get better. Also thank you for sending the link, however for some reason I wasn't able to open it.

    Since my post, I am now on day 3. The pain in my legs is now what is most bothersome and I now started having a raw line feeling in my mouth.

    I increased my water intake but will start drinking more.

    Since you started in August, do you still have any side effects?

    I will see my doctor in about a week for labs but will call today to discuss the side effects, I'm wondering if my doctor can reduce the dose. Actually I was given very little information before I started. I find hearing others experience has given me more feedback about what to expect.

    Thanks again so much!

  • Glad to hear you're drinking more. Do try to drink 8-10 glasses a day so your kidneys function properly. Don't drink more than 10, as too much fluid intake can also be detrimental. I take my 3 pills at around 11:30 p.m. before going to bed, so they are doing their thing while my organs are at rest and in healing mode during the night. I know that others prefer other times of the day, and everyone has to find what works for them.

    I drink about 16 oz of water a couple of hours before taking the pills, and then another 16 oz with the pills. Drinking lots of fluids with the pills helps to ensure that they are carried all the way down to the stomach quickly, and the reserve of fluid helps the kidneys process the dying cells. Of course, the amount of sludge moving through your body will depend on how involved your bone marrow and nodes were when you began treatment.

    It's unfortunate that your doc didn't share specific info with you about this powerful drug. It is not to be taken lightly. I do hours of research every day. When I have appointments, I go in with lists of specific questions. Sorry the link I provided didn't work. On the ACOR CLL listserv, links work in emails. I guess they don't on this site. I encourage you to google "Ibrutinib side effects." Many sites will come up. I find the one on cancercare pretty informative and complete, though you might want to check out others as well.

    If by "raw line feeling" in your mouth, you mean it feels sore, you will find that mouth sores can occur with this drug. In addition to my ankles, legs, and stomach being swollen with lymphedema from dying cells, my tongue and lining of my mouth were swollen. As a result, I found that I was sometimes biting my tongue or cheeks. Since one of the biggest risks we have is developing an infection, I did some research and discovered that Oil of Oregano is an antimicrobial that can help fight infections. I ordered the Natural Factors brand on the web, and I began putting one drop on top of the toothpaste on my toothbrush. The sores in my mouth began healing right away, and no more have developed. I continue to use the oil every time I brush my teeth. It's pretty strong tasting, and one drop is all that is needed to do the job. You might consider trying this easy fix.

    After about 6 weeks on Imbruvica, I began getting the typical splits on finger tips. or dry split nails, another side effect of the drug. I have found that Shea Butter is really good at healing the splits and nails. It's a little greasy, so I use it before going to bed at night, again if I have to get up to go to the bathroom, and any time during the day when I won't be handling anything that I don't want to get greasy. I purchased African Whipped Shea Butter on Amazon, and work the butter into the nails, cuticles, and fingers. It's done an amazing job of healing. I'm really glad to have discovered the Shea Butter, because I always get finger splits during the winter, and now I have a remedy. Who knows? Maybe this year they won't even develop.

    While on non-medical remedies, heartburn is another typical side effect experienced by many on Imbruvica. Whenever it would crop up, I immediately ate a couple of forkfuls of kimchee or sauerkraut, which quickly made the heartburn go away. Much better than taking meds. I stopped getting heartburn after a month or two.

    Consider talking to your doctor at your next visit so, together, you can weigh the severity and degree of your symptoms against the dosage of the meds and the progression of your labs. It takes many of us about a month or two to adjust to the drug so side effects diminish. Of course, some do have severe symptoms that require lower dose or stopping the drug. Hopefully, your doc a CLL specialist with up to date information.

    If you weren't told much, were you at least told that you should not drink or eat grapefruit or Seville oranges? If you do your research, you will find some other things that are contraindicated with Imbruvica; e.g. echinacea, St John's Wort, etc.

    May you heal well and may the side effects reduce quickly.

  • Thank you sooo much for sharing this with me!!

    Actually, I got very little information from my doctor or patient support program, but I did get some information from the pharmacist who said not to eat any lime.

    I have been reading a lot since taking Ibrutinib and have more information now plus this site helps a lot. I find I'm not alone.

    The water increase is helping and I think I went overboard on the water yesterday but the diarrhea is now manageable as I started taking Ibrutinib at night on an empty stomach.

    My blood count was about 230k before I started and a swollen spleen so maybe that is why the side effects hit me so hard.

    The raw feeling in my mouth is sores on my tongue and in my mouth. Yesterday I googled what to do and found a mouthwash recipe ( 1 tsp salt, 1 tsp baking soda and 2 cups water). I will try the oregano oil as well, thank you for that tip!!

    I didn't know about the nails splitting and the indigestion. ..thank you for these tips as well :)

    The pain in my legs and actually all joints is the worst. I am really hoping this will also eventually subside as really affects my quality of life.

    Thank you very much for your support!!

    I hope everything is going well with you and that you no longer have any side effects or at least very tolerable ones.

  • Another virtual hug coming your way!

  • Thank you! The hug helps :)

  • My symptoms were not as severe as yours, but they all went away. However, on days I don't drink enough water or eat a diet too high in fat, I do still pay for it. I do find that "pushing water" (phase coined by DanaM and I do think it feels like pushing water because you need to force yourself) really helps, so get your 8-10 glasses in every day without fail, like starsafta said.

  • Thank you! I have been pushing water today and you are right it really does feel like pushing! I hope I'll see a change :)

  • Let me know if it does. :)

  • Hello

    I have been on Ibrutinib since May of last year .

    I had quite a bit of nausea and also problems with sore skin in the first few months .I also had a fungel infection in my groin .

    We all seem to experience different side effects with this drug and some people's last longer than others .

    Stay with it if you can as it will get easier.

    I take my Ibrutinib first thing in the morning on an empty stomach with a pint of water .

    I find if I don't drink enough water during the day I pay for it one way or another by either getting cramp in my hands or legs or fatigue.

    As time goes by you may get the odd day or so when your legs ache or feel stiff ,almost as if you have strained or pulled something but I find just as I'm beginning to get quite fed up with not being able to do my walk each day it disappears.

    For all the side effects you may or may not get it will be worth it in the end .

    Wishing you the very best and a big welcome to this amazing forum .

    Brenda 😀😀

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