I'm new to this site but knowingly living with and being treated for CLL for 12 years. I've been on Imbruvica for 5 years. This site was a great find as I'm happy to be able to speak with and learn from fellow survivors.
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ETFitz1
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Welcome to the group ETFitz1. You have found a great group of people who know what you are going through and will be there when you need them. I have been here for about two years now and have had nothing but A great experience.
By the way, does ET by any chance stand for electronics tech? I was an electronics tech in the Navy and that was what we went by. Just curious.
Chris
Welcome to the site. I am not aware of a lot of people on here who would have five years plus experience on ibrutinib. As someone who has been on ibrutinib for 18 months now, I would love it if you could share your 5 year experience thoughts.
In particular I am curious as to what side effects you have had and if they got better or worse over time. Has ibrutinib put you in remission or has that been discussed with you by your doctor (the literature seems to say they are seeing ten to twenty percent remissions five years out on ibrutinib).
Is there any plan for you to add another drug to ibrutinib or take a break from it and see how you do? The plan for me, I think, is to add venetoclax at some point.
Sorry to hit you with so many questions. I do think sharing your long term experience with ibrutinib would be of benefit to others on the site, and me. It seems like every other day we have someone contemplating their treatment options which usually leads to some ibrutinib related discussion. Your long term experience could help some with their analysis.
I started Ibruvica 3 months after it was approved by the FDA. I am in remission and am monitored through blood work and physical exams. My understanding is that I am to stay on the drug indefinitely. I haven't had any other conversation with my oncologist about changing the course.
When I first started, I did have abdominal issues and fatigue, but they subsided rather quickly. About 3 months in, I ended up hospitalized for a week with mouth sores, bloodshot (more like dark red) eyes, and joint pain. After, they lowered the dosage to my current dose - 280 mg. About 6 months later, I had menstrual problems that were quite problematic. I believe it to be due to the chemo. And most recently, I'm having mouth issues again. It seems more like a rash than sores. I was taken off for 10 days and have been back on for 7 days, but the rash began again. Currently, my biggest issue is my IgG and IgA counts are extremely low and my insurance refuses to certify a treatment.
I hope this helps with some of your questions. I did start a blog that gives more in-depth details on my journey. You may find it helpful. I haven't updated it in a few years because I've been relatively healthy.
Jennifer
Yes Jennifer, this is very helpful. And a reminder that there is no treatment we have that gives us a true free ride. It sounds like you have had some issue with ibrutinib, but with your doctor have figured out ways to work through them.
I am curious about you being in remission and what the practical impact of that is with a drug like ibrutinib. I find "remission" can have different meanings. If all it means is that our labs have normalized, I suspect there are a lot of inbrutinib remissions. A "remission" where we are mrd undetectable on our peripheral blood and bone marrow would be a much different thing to me. I am never quite sure what definition applies. I am pretty sure in clinical trials when they speak about remissions, its mrd negative remissions.
Why that distinction is important is I wonder at what point our doctors consider taking us off ibrutinib, particularly in cases where one has an mrd negative remission but is having side effects with ibrutinib. Can we get off ibrutinib and then get back on it if our cll returns? If we get mrd negative on ibrutinib, how long could we go progression free off of it?
There are still a lot of questions about ibrutinib. Hopefully we will get more answers as more and more people like you take it for so long.
Thanks for replying. I am going to read your blog for sure. jeff
ETFitz1, Thanks for sharing your information. I started Ibrutnib 140mg once a day, October, 2018. I'm experiencing joint pain (has improved), hard walking up and down stairs and weight gain.
Hi there,
I’m also on Ibrutinib and have weight gain and the joint issues which suddenly disappear for a day -pain free and then randomly appear again 🙄 small price to pay though - knees dont always like going up and downstairs either 🙈 still hope Ib keeps working 👍
Wow - I wish I found this forum a few years ago. So many great people are having similar experiences as me. I also had some weird joint pain - but don't recall any weight gain personally (at least due to the Imbruvica).
Best wishes.
Jennifer
I, too, experienced weight gain and random joint pain, most notably when walking up or down the stairs. I am glad (but sorry) to hear others experienced weight gain. I thought it was just me! Meanwhile, my oncologist holds out great hope for venetoclax as the great miracle "cure" for CLL once it is approved for general use. May we all live to see that day!
Yes, I definitely experienced joint pain at first, too. And sometimes I get small flare-ups but it is more of an annoyance than anything.
I hope you are well. Thank you for responding. This site is fantastic!
Jennifer
ETFitz. Welcome to the site. I was on Imbruvica for 5 yrs then it stopped working so my Dr. decided to put me on Venteclax and it made such a difference. No more mouth sores, no more joint pain. It’s made my life wonderful again.
Good luck with your progress, Anna
Hello,
I'm happy that the Venteclax has helped you - thank you for sharing. I failed chemo three times before starting the Imbruvica and my most obvious symptoms were swollen lymph nodes. Before every oncology visit, I still give myself a self exam - paranoid that it's coming back.
Thank you for reaching out.
Jennifer
cllady01Former Volunteer
Welcome ETFitz1, We all learn from each other and are very happy to have new members who bring to us experiences some of which some have had as well experiences no one has never encountered before.
It appears you are well on your way with CLL and I hope that means you are doing well on Ibrutinib, which I am guessing from the construct of your statement is your 2nd treatment.
Imbruvica is actually my 4th regimen. I started with Cytoxan, Fludara, and Rituxan. Then Rituxan & Treanda. Third was Ofotumumab. I actually stopped responding to the last drug about halfway through treatment.
wow, you are a veteran and a survivor. I hope you are doing well on Ibrutinib.
Those who are taking in have shared extensively about side effects, so you may have read some of those. you can find previous posts in "Related Posts" if you haven't already done so. But feel free to ask any questions regarding your CLL and treatment.
I’m doing imbruvica- 420 daily- and Rituxan every other month. I currently have very low IGG counts. I get frustrated with the mouth sores and very bad hang nails or cracks that get infected and painful. I try not to complain, as I realize things could be way worse. I guess I’m not sure when I should really worry about side effects. I worry I could get an infection that snow balls into a huge problem? The information here really helps put things into perspective. The one positive is my hair seems to have the curl I always wanted.
Welcome ETFitz! ! 
Welcome to the group!
I found this group back in April when I got my differential diagnosis, and everyone has been amazingly supportive and knowledgeable since my official diagnosis in June.
We're all here to share info and help each other in any way we can, even just to lend an ear.
The admin are The Best and keep this place running smoothly.
Looking forward to hearing your experiences on ibrutinib.
Carol 🇨🇦
Welcome! I too am interested in your five year experience on Ibrutinib. We are lucky you found us. My husband has been on it for 5 weeks. It’s working wonderfully for his cll, but he is experiencing more RA symptoms and we are wondering if the Ibrutinib has something to do with it. What has been your experience with joint pain?
Yes - I did have issues with joint pain! It's a long story. The joint issues were coupled with other symptoms ie mouth sores and red eyes. They ended up lowering my dosage.
I was referred to a Rheumatologist who took a lot of blood work but nothing was found. The pain did eventually subside over time and I still do get some minor flair-ups. I attribute it to the drug.
I did write a blog post about when I had these issues. You're welcome to read it.
cancerboxer.com/stay-thomas...
I hope I was able to help.
Jennifer
Hi, I started ibrutinib 5 weeks on Sunday. I had osteoarthritis, degenerative disc disease and fibromyalgia. It was all under control before I started ibrutinib. Its stopping me driving most of the time. At the moment its my shoulder and the top of my arm. No way could I drive safely. Really painful. My right hand is painful tonight.
My numbers have dropped by 25. Thought they would go up.
I will be interested in how your husband progresses. I am praying this doesnt go on indefinately. As you will be. Anne uk.
Hi, I have had cll since 2001. It was diagnosed in early stages and it was 9 years before I was treated with chemo fcr. I then had 5 years remission and 3 more years of watch and wait.
I have been taking Ibrutinib for 1 month. I was surprised that my white count had gone down by 25 as most find it goes up to begin with.
I feel great but have joint and muscle pain. A different place each week.
Many people will,like me, be interested in your experience with Ibrutinib after 5 years. In uk it is relatively new and only for those who have relapsed. Some are in a drugs trial or unsuited to fcr.
Love to hear from you, Anne uk
Hi Anne,
I did experience joint and muscle pain, too. The worst about 3 months into treatment. They ultimately had to reduce my dosage. I get weird flare-ups occasionally but they normally subside within a few days.
Good luck with your treatment. Please let me know if I can give you anymore insight.
Jennifer
I was hoping things would improve but it seems for many they dont. I had my blood tested after a month and expected my white count to be raised but it had gone down by over 20. Its obviously working. Its being unable to drive on many days which is frustrating and also waking with pain and stiffness. Just have to get used to it. Anne uk
Hi ETFitz1, I'm newly diagnosed ( 6 months) and have found this group to be such a comfort. Sometimes I'm afraid to read about side effects and it raises my anxiety over this disease that came to live with me, but reading your post gave me hope. I try to not be frightened, which i fail at miserably. I'm very thankful that you and others are sharing your journey.
Thank you for your honest post. I definitely understand your anxiety. I've learned to focus on what I can control when I begin to feel overwhelmed. - my diet, my activity level, sleep, stress reduction techniques. Despite the disease, I'm very healthy and live a normal life with little restriction.
I'm happy that we both found this site. The amount of support I received in the last 24 hours since my first post is incredible. I hope you find comfort in our little community as well.
Jennifer
Welcome ETFitz1!
Welcome to the group and thank you so much for sharing such powerful insight!
Hello ETFitz1
Welcome, welcome. This site is so great that I wish doctors would hand out site URL when giving diagnose to help their patients get up to speed. Blessings.
Welcome to the site you'll find this very informative. Could I ask what your white count has been during the five years and how much IB are you taking?
Welcome to the group. Thanks for sharing your story. Despite some terrible side effects , I love the part of your story that you are healthy and live a normal life. I'm also on Ibrutinib and like to think of myself as healthy and living a relatively normal life.
Miller1960
Hello ETFitz1 I too take ibrutnib one and ahalf month on it. Things are going ok wbc went up and are coming down a littlle. Lymph nodes are going down and I do feel tired a lot but I push on ha. I was scared of side effects so far nothing major. Now I'm wondering if at 3 months or so I too will have mouth sores. I just want to be normal and not worry i know wishful thinking!!!!!
Hi Catstwo!
What I've learned is that everybody and every body is different. The dose I was taking at the time (420mg) was too much. I sincerely hope that it doesn't happen to you. But if you begin to have complications, call your doctor. The great thing about this site is that you are getting information that you may not have learned from your doctor or pharmacy. We're all just regular people who can share through our experiences.
Good Luck,
Jennifer
Thanks ETFitz1 i am on the 420 dose too i just hope for the best.
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