Starting Imbruvica today!

[Joelcarver]

Hello, I’m 67 yo. Diagnosed with CLL in late 2009. About to start my treatment of Imbruvica tonight. Was wondering what I could expect. I know everybody is different but I’m wondering what if any side effects you’ve experienced and how you battled (treated) them. Thanks!

[Hidden]

Hi Joel

I’m currently taking Imbruvica and have been for 18 months. I’ve found keeping yourself hydrated is the best way to counter many side effects, try to drink on average 2-3 litres of plain water daily.

Common side effects can range from petechia which is a rash,mild stomach issues and bone and body pains, general fatigue,but most of these will subside if you tolerate the treatment but it’s always best to keep in touch with your specialist with any changes as things can be rectified before they get any worse.

In reference to what you can expect, if you tolerate the treatment well and you respond any swollen nodes will shrink and your blood work will return to normal ranges within a few months. Ibrutinib is generally slow acting but once it begins to work it’s magic you’ll see a great improvement.

Stuart

[Joelcarver in reply to Hidden]

Thanks for your reply,it’s kinda scary,don’t know what to expect.

[Emcee1]

I had a rash on my arms after the first day. Was taken off Ibrutinib for a day so I can take Benedryl which took care of the problem immediately. Only other thing now after three and a half months was a sour stomach which subsided for me by eating a full breakfast thirty minutes prior to taking the pill. That went away. Wish you the best of luck. My blood counts have been much better after this drug.

God Bless!

Mike...

Oh the other thing to expect is a lot of great people here on this forum willing to help you every step along the way. AND a lot of hours reading prior posts!!!!

[Joelcarver in reply to Emcee1]

Thanks so much. I decided to take my imbruvica in the evening so as not to mix it with my morning meds. I can already see how it can be an encouraging thing being part of a support group. It’s a first for me. I’d rather be carving!

[migirlusa]

Hi Joel - everyone has such different experiences with this drug. I had immediate blurry vision. It has somewhat subsided. Petechiae everywhere. I had to have 2 transfusions. Lots of bruises. Now let me tell you I felt great even with these crazy things. Number 1 call your nurse about anything that happens. Drink lots of water. I drink a gallon a day. That’s not for everyone but I think it helps. I tell my friends it’s an adventure every day to see what crazy thing will happen.

Keep us posted.

Pam

[Joelcarver in reply to migirlusa]

Thanks Pam. I like reading that “even with all those crazy things, you felt great!” Encouraging!!!!

[CLLCalifornia-USA]

Hi Joel,

I have been on Ibrutinib since January 2017 and have yet to have a bad reaction. I take Ibrutinib on an empty stomach at 7 each evening. Throughout the day I stay hydrated. I’m a 66 year old female and have had chemotherapy twice previously. Taking three pills at 7 is pretty simple and I feel great. My huge lymph nodes disappeared right away. I’m back to enjoying the things in life that I love. It’s scary because at times I forget I have CLL/SLL. All my labs are in normal range. Wishing the same for you. Sally

[rlyndecker]

I've been on it since Aug. 2017, and almost immediately my huge lymph node on the back of my head and my neck were much smaller and now every time I go to the oncologist, he can't believe it (neither can I!) because he can't even feel the one especially on the back of my head! My blood work in May, was the best ever!

I consistently have an upset stomach every morning (I take mine pretty much every evening, different times but sometime about 1-2 hours after dinner), however my body has never been "perfect" in that area so I'm sure that's part of it, but a huge part of it is the Ibrutinib. Other than that, I honestly don't feel any different than a year ago except like I said, my sore neck is gone

[annmcgowan]

Hi I am on Ibrutinib and rituximab on the Flair trial no side effects other than a bit of bruising from Ibrutinib. Good luck. Keep us informed.

Ann

[Hidden in reply to annmcgowan]

Hi Ann

I’m currently on the same trial. When did you start? How are you getting on?

Stuart

[annmcgowan in reply to Hidden]

Hi Lewis I started on 7th March so 2018 so almost 4 months in. Just had 5th rituximab infusion this morning and all went well. Only one infusion to go then Ibrutinib only thereafter. I am very pleased with the outcome so far. Hope it all continues to go well🤞🤞🤞. Hope it all goes well for you too🤞🤞🤞. Keep us updated. I find this website an excellent support.Good luck

Ann

[Hidden in reply to annmcgowan]

Hi Ann

That’s good then no adverse reactions, I bet it’s all the norm now going in and enjoying the free biscuits and coffee😁one strange thing is it’ll be weird finishing and not going back although it’s probably flown by.

I Started my infusions in October 2016 so a distant memory now but I developed a nasty bought of shingles a few weeks after my final infusion and thought I’d give you the heads up, it tends to hit your body hardest on the last one so just keep your eye out for any signs or symptoms and you can pick up some anti virals from your dr to help stop it from worsening.

Stuart

[annmcgowan in reply to Hidden]

Hi thanks for giving me the heads up. I have been offered acyclovir from my GP and wasn’t sure what to do about the offer. I am seeing her tomorrow so I will accept. I was going to wait for liscencing of the shingrix non live vaccine for shingles being liscenced later this year but guess I shouldn’t take the risk.

Thank you so much.

Yes the coffee and biscuits and lunch are good and the sense of humour and support from the nurses who run the ward is wonderful and extremely therapeutic.

Take care

Ann

[Graham64 in reply to annmcgowan]

Hi Ann. I started IB alone two weeks ago. Since the beginning I have been prescribed Acyclovir to go with it. The first week I got a rash on my arm which I worried was shingles, but there was no itching or nerve pain so I think it was not. It has now virtually cleared away, and I think the Acyclovir is responsible for that. Graham

[annmcgowan in reply to Graham64]

Hi Graham glad to hear your rash has cleared. Good luck with your treatment.

Ann

[RJR1]

As you'll continue to see here we are all experiencing things differently. And the methods and schedules for taking Imbruvica vary greatly.

I take my 420 in the morning along with my Acyclovir and Biotin and other meds. Usually shortly after breakfast. And like others I drink at least 3 quarts of water daily.

Skin bruises are common as is a tendency to bleed easily. Be careful trimming your cactus, that is if you live in the desert.

The most troublesome side effect for me is the splitting skin on my finger tips and brittle nails. Hence the Biotin mentioned above. Use moisturizers routinely. Surgical gloves over well greased hands overnight helps. Keep liquid bandage handy as it seals the splits while they heal. Use Hard as Nails ( sure wish they offered a flat finish vs shiny for guys). When a nail really splits nothing works better than a Super Glue gel. Glue the broken part back in place and after it dries completely, file it smooth with an emory board. Filing also helps keep nails smooth to avoid snagging which can result in splits.

The other oft mentioned side effects, aches and pains, diarrhea, fatigue...seem to catch all of us differently.

[MsLockYourPosts Passed Volunteer in reply to RJR1]

I wonder whether any of the men who have expressed wishing that there was a flat finish hard as nails have contacted the company. Might get somewhere. It would probably bring in some good publicity if they listened.

[BeckyLUSA]

Here’s hoping you will be one the lucky ones with no side effects! I have been on it since last August. In a trial which directs that I take it just before I eat breakfast. I have had major side effect of diarrhea. It was bad in the beginning, but now it comes and goes. Wish it would go away and not come back. I have the dry and brittle nails, wonky hair, some petechiae, and various aches and pains. I drink at least 80 ounces of liquid a day, most but not all water. I also take biotin.

Putting up with the above is well worth it. All numbers in normal range, all nodes normal size, and except for the side effects I feel great, more energy than I have had in a long time. If I were not taking the medicine and having a few side effects, I would not remember that I have CLL.

Best of luck to you.

BeckyL USA

[Joelcarver in reply to BeckyLUSA]

You go, Becky! Thank you

[barger1951]

Hi Joel,

I too started Imbruvica at 67 diagnosed a year or two earlier than you. There are a lot of good and a few not so good things that you will experience. The good: lymph nodes will go back to normal or almost normal, white blood cells will go down almost to normal (my experience) . As for the bad, everyone experiences that part a little differently. To mitigate the negative, I dragged myself to the gym (walking is good also). Meditation helps and a little volunteer work gets you outside yourself.

You will discover your own coping skills and tricks that work for you and hopefully share them with the rest of us. For me the first 6 months were a little rough but you might not have the problems I did (I have a congenital heart condition as well as kidney issues). Write down all you blessings and try to focus on those as you go along.

Thanks for sharing,

Steve

[Joelcarver in reply to barger1951]

Yes! Many blessings we sometimes need to be reminded of. Thanks, Steve!

[81ue]

I'm on imbruvica for 8 months now. I got the petechia and still have it. I get little hives/rash on skin from things that never would have done it before - like the insides of a chip bag, or the sanitizer they use to disinfect skin prior to a blood draw. I bruise easy and the bruises take a long time to heal. I got cramps in legs at night and can get joint or muscle pain depending on what body part was used more than usual. My mouth feels very dry at night. I asked the dr if fatigue was my condition or the imbruvica and was told it could be both.