Picked up my Imbruvica today. I'll start Sunday. Just joined my first forum/blog site (this one) just now. Not really sure what to expect from Imbruvica (other than what I've read) or from this site. Just turned 60. WBC count is around 130K. Spleen is swollen a bit, but that hasn't gotten in way yet. Slightly ashen skin with dark circles under my eyes has become my new look, and I have been collecting little bags of 'golf balls' here and there. BUT, I still want my glass of wine or scotch or 'ranch water' and my cigar every Saturday evening. Once a week is not too much to ask, is it? Any thoughts or experiences? I still plan to work out like a demon everyday. Any thoughts or experiences? I still plan to ride my dirt bikes hard, fall, bruise and occasionally bleed. Any thoughts or experiences? I plan to ride the Continental Divide Trail again next summer (fall and bruise a lot). Any thoughts or experiences? After reading back over this post, it appears I may be having a hard time internalizing that maybe I need to slow down. Hmmm
Imbruvica and an extremely active lifestyle - CLL Support
Imbruvica and an extremely active lifestyle
Lol! Nice to meet you, Beyond9Lives.
No advice to offer, as I’m on a different treatment plan, but pleased to make your digital acquaintance. You seem like quite a character. Even your profile is darkly funny.
(PS: I have a beer a week—living on the edge! I also run 5 days a week & drum every day, as I have since I was 10.)
you can do anything you want. Imbruvica may or may not give you it;s side effects. I had roving joint pains for the first 4 months. As far as i know alcohol and cigars are no worse with it-although in general someone's health is better without alcohol and smoking.
Welcome Beyond9 Lives. This is the only forum I have joined, too.
I won't tell you what or what not to do, but I would suggest, if you haven't done so, to read this Mayo Clinic information. Some of the unusual bruising/bleeding mentioned could be difficult for you to determine with your extremely active lifestyle.
We are all individuals in or presentations of CLL and in our side effects of our treatments, just like we are all individuals in how we choose to live. Long may you thrive and love your life.
Hi I am on ibrutinib 19 months in with a few but manageable side effects. This drug has been amazing for me. I am 68 and nowhere near as active as you but I continue to live a normal lifestyle for me.
Good luck
Ann
Identical in my case. I am 86 and started Imbruvica at 84. CBC close to normal. Exercise and diet !
I think you will have to see how your body handles ibrutinib. I would say my husband is active as well, but not the activities you describe. He is a little more fatigued than he was before and a cut or scratch bleeds longer. If you feel well go for it but be informed about the bruising/ bleeding.
I have been on Ibrutinib almost three years now. I work out regularly with no issues, if anything ibrutinib helped improve my hemoglobin which gave me more energy to work out.
As to the frequency with which I indulge in adult beverages, I plead the fifth dimension on that one. 😎🤳🤳
I was amazed how much stamina I had lost. Though the one thing is, you MUST take Ibrutinib and the other pill / drug close to the same time each day, which means you can't change the time you take it if you go to other times zones
You can gradually shift the time you take your pills by a little each day to better fit with your new timezone. BTKi instructions allow you to take a missed dose within a certain time before you should miss that dose.
Neil
I think a good way to think about the CLL as you adapt and adjust is to balance life fully embracing your lifestyle with a new concept of “gentle self care”.
For example, Learning to cope with any bruising and bleeding that occurs as a result of the CLL and Imbruvica or self caused by lifestyle choices. My biggest question or concern would be an additional traumatic injury to your enlarged spleen that is already present in your body connected to the CLL.
May we all become “balanced life” experts as we all adapt to our uniqueness within the CLL and treatments. 🚵🏼♂️
You sound like a guy who would love the GNOLL CREDO by J. Stanton. 😊 Go fast till the end and check out in style is the motto. Good luck!
You’ve come to the right place to get a variety of thoughtful opinions and hear about the variations of experience each of us has had. I can relate to you about the ashen skin and dark circles prior to treatment! Thank God I wasn’t due for my driver’s license photo during that time! My vanity would have been wounded for 10 years. But I feel so much better after 10 months on Ibrutinib. I exercise as strenuously as I am able and drink alcohol when I feel like it, though during the first month I avoided any because of the danger of kidney damage when the drug was clearing out the bad lymphocytes. I’ve been fortunate to have few side effects. Bruising and bleeding are something that he drug will likely effect, so it would probably be a good idea to proceed with some caution until you see how it effects you.
Good luck on your Ibrutinib journey!
After my chemo regiment failed (P17 deletion) I have been on Imbruvica for 4 years 11 months with great results. During that time, I travelled to Europe 3 times, taken numerous cruises and still work full time. Since Covid - I bought an RV so I can continue traveling when I'm not working. I enjoy my whiskeys, and nightly cigar (I know I should cut back to once a week) - I don't think you'll miss a beat. Carpe Diem!!!
I've been on ibrutinib for about 4 years. While everyone is different, none of the side effects have affected my ability to maintain a high activity level. I figure skate and have not given up jumping, which occasionally make it a "contact sport." I do bruise and bleed slightly more easily, so you'll have to see how your body reacts. Dr. Byrd at OSU (internationally recognized doc) told me 1 drink a day is fine, but never more than 2. He's not a fan of cigarettes but don't know what he'd say about a weekly cigar.
Welcome aboard!
I'm on my first month of taking it. So far I had some nausea the first two weeks, I was able to adjust when I ate my morning meal and took care of most of the problem. I am VERY active. I routinely cover about 10K steps a day walking in my day to day life, I exercise as often as possible on top of being a single dad to two teens and working full time.
I have had days that fatigue was an issue and when it is a bad day ( far fewer and further between now! YAY) I listen to my body and take time to rest. Eat well, DRINK a lot of water, rest well, but above all try to keep moving. It helps so much with fatigue, even if it feels like you want to never get out of bed.
I too just started Ibrutinib in the end of July this year. WBC was 350K. Turned 60 this year and live a very active lifestyle. The first month was a doozy (incredibly swollen and painful joints and some other secondary infections I had to deal with. No headaches or diarrhea which are common side effects. Make sure you drink a TON of water) But after the first month, I feel as though its been a miracle! Soooo much energy (I didn't realize the deficiencies until I started feeling back to my old self!) In terms of activities that might fall in "high risk", I ski which I definitely had dialed back these past couple years due to a very enlarged spleen. The fear of falling and having it burst was always on my mind. But literally a week or 2 after starting ibrutinib, all my "golf balls" and spleen literally went back to normal. So I plan on ripping like I used to...counting the days...but still with a bit of caution...don't really want to end up in a hospital during these days of covid. Something to think about. But life is short, and you have to live it in a way that brings you joy. In regards to drinking, my doc told me a glass of wine (or other spirit) would be OK occasionally. Never was a big drinker, but it makes it a special occasion anytime I enjoy my glass of red wine. So hang in there during your first month or two. Should you have any side effects, they do tend to lessen as time passes for most. Best of luck to you!
Never say never! Slow down? Not in the least. I started Imbruvica a year ago and what surprised me the most, is that I had a lot of energy. I never felt fatigued. I've got at least a decade on you and I'm still very active. I hike, cycle, nearly every day in good weather. I do heavy gardening, lots of digging and lifting heavy uprooted bushes. Your exercise will help to keep you strong. Still, this drug is not without its side effects. I had muscle aches and pains for nearly 10 months. The aches and pains are a common side effect. Tylenol and some times a heating pad were helpful. Still, I pushed through it. As my oncologist said, "it's not your (my) style".
For me there were some unusual side effects that happened with my skin. Popular rashes, red swellings under the skin that were painful but went away in 2 to 4 weeks. That is a side effect that happens to less than 1% on the drug. Its called panniculitis. My skin tore, yes tore very easily and a biopsy showed that the epidermis and dermis had separated. Again, very rare. And finally blisters all over my hands. That did it for me. Had to stop at nearly 10 months on the med. But no nausea, vomiting, diarrhea, nothing common. I thought it was an easy drug to take until my skin had had enough.
My reactions were rare and obscure as one nurse practitioner described them. Hopefully just some aches and pains will be all you experience. Oh, and your hair might get curlier! No kidding
I wish you well on your journey. Don't stop doing what you are. You are not your cancer. Its just something you have that can be managed.
Pat
Very ambitious plans but you might want to see how you react, ie, which side effects you get. Everyone gets quite a few although many go away in due course. The bruising I get is like nothing I ever had before Ibrutinib. I gave away my ice skates even though I rec skated with shin and elbow pads. I upgraded my snow skis and experimented with skiing slower last year. Stamina is a big challenge. Infections on any and all cuts is a reality. My New Normal looks quite a bit different than my old one. The first six months were the roughest. The next ten have been a lot smoother
well ibrutinib acts like a dose of aspirin in between 100-325 mg , it is an anticoagulant.....you will have to watch how you react to it ,before doing some ¨extreme¨ activities ......
Side effects can be ugly in some persons or almost non existent on others ( i have had few and very mild ) ..... at least my thought and i would talk to yout dr......
I had Stage 3 CLL at 84. With Imbruvica since almost back to normal CBC at 86 . Walk one hour daily on my indoor treadmill, plus once a day from ground level climb up to 16th floor. Diet: Vegetables, fruit, nuts, salmon (canned without salt), non-fat plain yogurt strained into farmer cheese. There are stocking-like "arm protectors" and "leg protectors" available. Try music therapy: Dixieland Jazz and John Phillip Sousa. It stimulates nerves and psyche.
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