I will be starting treatment with Brukinsa in a few days. Would like to know if anyone has experienced fatigue while on it and how they deal with it. I was told I may be on this indefinitely but it is possible I could go into remission in a year or two also. Is the fatigue temporary or will I feel it as long as I am on this med.? Someone made the comment sometimes worrying about how you react to some of these medications is worse than the drug itself. I can not stop thinking about how Brukinsa is going to affect me. Trying not to be a big baby about it but it does worry me how I am going to feel .
First experience with Brukinsa: I will be... - CLL Support
First experience with Brukinsa
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Vacationmountaintop
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NewdawnAdministrator
I hope your experience of Zanubrutinib (Brukinsa) is as positive as mine. Apart from a bit of fairly inconsequential petechia, I’ve found it to be a non intrusive drug that really does the business! Massively fewer side effects than Ibrutinib.
Let’s hope it keeps working for all of us for a very long time!
Newdawn
Did you experience any fatigue and if so for how long?
In truth it’s hard to say because I’ve had other issues including a major operation whilst taking it but I’m not aware of Zanubrutinib making me excessively tired and I certainly was before I started it!
Good luck,
Newdawn
I spent a good hour at oncologist office yesterday. It was explained to me all the side effects that could happen and how to handle them. I realize it doesn't mean they will all happen to me but it was just overwhelming and worrisome to hear. Thanks for your reply.
They could do the adverse effects speel for every single drug and even food we injest. I was so relieved to start them because I was very unwell and apart from being a monster size to swallow, I’ve found them to be absolutely fine.
Don’t be spooked. They’re actually life savers!
Newdawn
Newdawn, Thank you. It helps to hear postive comments like yours
Noooooooo. I am just about to start, having stopped the tablet form of Acalabrutinib. Don’t like big tablets🤷♀️🤨. Or moving forwards maybe have to say ‘just swallow and see’😉
I’m not sure if they do alternatives but I take 4 pretty large plastic coated capsules (that can’t be split). Just make sure you have plenty of liquid and lubricate your throat before taking them.
Newdawn
Well, firstly I am glad they are capsules, but secondly - what the heck is in them🤫🤷♀️🙄. They ‘gotta’ go down. Thanks for the advice
Hi there, are you going to be starting Brukinsa too? I was given my first bottle of it and they are not large pills. They are normal size capsules.
Hi, yes as I didn’t get on with Acalabrutinib in tablet form. Seems it has one ingredient which doesn’t suit me. Fingers crossed 🤞🏻
Good luck!!!!
Vacationmountaintop, a capsule is easier for me. I'm glad to know that choice will be available if I leave W&W.😊Sandra
Yes I was glad too that they aren't large pills that are hard to swallow
Walkingtall62, I can't swallow large tablets easily. I've refused some Rx because of this. I tell them an elephant couldn't swallow it! I have the good fortune, so far, to have had a good 2nd choice.😊Sandra
🤞🏻
☺️🖐️
Pharmacy haven’t yet delivered🙄
Newdawn I forgot to say I was addressing this question to you about the fatigue. Did you experience any and if so for low long?
on it for 1.5 years. No fatigue at all. But for me the constipation is now chronic. I deal with it via diet and under control.
Sunfishjoy, You give me hope. I already have it in my head that my first few days on this that I am going to be a total wreck. Meaning I will be sick to my stomach and be so tired I will not be able to function. I am trying not to think like that even though I'm aware I could get nauseated, etc. That is why I love this forum. The support and experiences of others helps sooo much.
Oh heck. None of those came to my mind. Swallow and smile, and good luck 🙂
Try methylated vitamin B complex from Life Extension called BioActive Complete B-Complex. It has helped people I know with constipation. Take it in the morning as taking it in the evening can impact sleep. Worth a try. I suggested it to a friend and ended her lifetime of constipation.
I wonder why you are anticipating these effects. Have you had them before from other treatments? I’m no expert but haven’t read here or elsewhere that folks are having strong side effects. Rather, most report mild bruising. Be sure to avoid grapefruit and Seville oranges. Drink a lot of water. And enjoy this beautiful life. 🎈
I have never had treatment for my CLL. This is my first experience. I guess I am expecting the worse because I seem to be sensitive to different meds and have had diarrhea from them. I have heard that you should drink alot of water like you said and I plan to do so. Thanks for the reminder. Enjoyed your comment.
you’ve got this! And you’re reminding me of how terrified I was before my first treatment, Rituxan. Terror subsided when my labs quickly became normal. How fortunate we are to have these treatments and more in the pipeline. Keep me posted on your progress please.
Thank you so much for the encouragement!!! Yes you are most certainly right about these different treatments being available and hopefully more to come, even though there may be some side effects to them. I will be posting how my first week goes. Appreciate your thoughtfulness😀
I have just started on Zanubrutinib and had no energy and tired all the time.but also been having night sweats,and must have lost alot of fluids ect minerals .by daughter sugested taking glucose and energy drinks,i take them in the night when i have the sweats also during the day which makes me feel better hope this helps
thank you for sharing
To get more answers, you might want to lock your post to this community.
In the mean time, I have a series of posts related to this issue if you want my feedback.
Hi Misfit, Please explain how to lock my post. I thought I did that already , but apparently I didn't. When I logged in this morning I had option of selecting who I wanted to see my posts and I chose community. That wasn't enough to lock in? I would love your feedback too.
That is how to do it, but if you look at your top post, you should see a literal lock icon next to the the name line - on the end next to number of replies (and it's not there) - it may not have saved correctly. I'd edit and try it again.
This post explains how to lock your posts. healthunlocked.com/cllsuppo...
You can't set an option in your profile to set your post share default - you need to follow this process for each of your posts.
Neil
I’ve been on Zanu for about 4 months. Sone fatigue, diarrhea and sore in my mouth. Overall manageable. Feeling much better than before treatment.
Good to hear Nana. What do you take for diarrhea and do you have diarrhea often?
I’m about 6 weeks in, no side affects my bloods all moving in the right direction it’s been a good experience so far.. hope you have great results
Jimmy, I love to hear success stories like yours who are taking brukinsa.. I hope I have good results like you are having. Tomorrow will be my first day on it, Have to admit I am alittle nervous but I have no choice but to jump right in.
Hello
I started taking Brukinsa in July and have had no fatigue whatsoever. I walk 5 - 6 miles a day. I do experience skin rashes mainly on my head and forehead. They do not itch and there is no pain. They appear randomly, last 2-3 days, disappear and then reappear somewhere else. The rashes have also appeared on my arm, waste, neck and legs. My enlarged lymph nodes have shrunk about 50% in size. I continue taking Brukinsa for another year and start Venclexta this Tuesday for 12 months.
Good luck!
Hello akirsch, Fatigue is one of the things I am most worried about. I don't want to be so fatigued I can't do the things I enjoy doing . Simple things like making meals and shopping or taking a daily walk. So encouraged to hear you are able to walk 5 to 6 miles a day. That is amazing. Thanks so much for sharing.
Hello, I've been on it since March, the first month I think my body rejected it but now I'm pretty good. I do suffer from acid reflux but I do have a hiatus hernia too... My bloods are almost in normal range so it's definitely working. Tiredness is a wee bit better but my body tells me when to sit down and put my feet up... I'm sure it will fine for you, be positive .. One last recommendation drink plenty of water... Wishing you well and enjoy your day... 😀😀
Hello Weetabix Cherries, I have read several replys from people with Cll and I can see that it really affects everyone differently. Some seem to breeze thru it on brukinsa and others like yourself have a little trouble with it. So your first month on it didn't go so smooth I see. Good to know that you stuck with it because sounds like it is working for you now. I will remember that and will try not to give up if it doesn't seem to go well for me at first. I notice alot of people say to drink lots of water so I will try to do that. Thank you for sharing.
I was on Imbruvica for 4 years , doing fine until I had a ecg and discovered heart issues , came off Imbruvica and have been on Brukinsa for almost 2 weeks. The first few days I had some nausea. I blame my fatigue on age and cll, it’s not debilitating. I walk everyday and play golf 3 times a week. Think positive, you’ll do great.
Hi Judami, What did you do to help your nausea? I was given a prescription nausea medication. Someone on this forum recommended I start taking it day before I start the brukinsa. Nurse practitioner said she didn't think I would need to do that . Not sure what to do. My friend said why don't I take it with my first dose of brukinsa tomorrow. I am undecided as what to do. I do not want nausea if I can help it.
I don’t understand why you would take a remedy in advance for a side effect that most people don’t have.
I understand why you are saying that. I have taken several drugs for different things though and seem to have very sensitive stomach. That's why I am afraid of being nauseated and having diarrhea.
I've been on Zanu for 13 months with no side effects. Keep us informed of your experience.
Oh wow gardener 58, No side effects? How lucky you are. That would make me so happy. Thank you for telling me that.
think you will be happy with Brukinsa. I have been taking it for over 2 years without any problems. Keep us posted with your reaction to it. Bet you will do fine with it too .
Hi Mogal, So comforting to hear you have been doing so well on it without any problem. I think talking to the nurse practitioner the other day about all the side effects I could possibly have has me expecting the worse. She did say I may not have any problems but I am having hard time blocking it out of my mind.
I been on Brukinsa for 8 weeks and haven’t had any side effects. I was worried at first when reading about the side effects. I’m actually feeling better since I started Brukinsa. Good luck to you
Hi Budd, That is great to hear and very encouraging. Thank you .
I have been on Brukinsa a year now. I had not experienced fatigue before starting it. I was very anemic so the oncologist started me on it. I was so afraid to take it because I have mitral valve prolapse and irregular heart beats, I prayed and also talked to my cardiologist. He said if it helped I should take it and he’d deal with heart issues. I had hypertension and already on a calcium channel blocker. After about 8 months my blood pressure got more elevated despite the calcium channel blocker so the cardiologist added valsartin with hydrochlorizide. The two have helped bp. I get palpitations but was having them before the Brukinsa. I don’t do anything strenuous because I work on the computer 9 hours a day. I haven’t felt fatigue as done have described with CLL. I’m 79 years old so I don’t expect to feel as I did when younger. Having said all of that, I tend to think if you’re already suffering with fatigue you might get relief with the brukinsa. I’m told to listen to my body so if I feel tired at the end of days work I relax a bit. I never was a napper but I notice I now doze off for a few minutes after work. If brukinsa adds to fatigue , you can always ask the doctor to prescribe something else. Good thing is there are other bitki blockers being prescribed and if once doesn’t work or stops working they can switch you to another. Best to you. If I can answer anything else regarding Brukinsa, feel free to reach out.
Good morning Silvafoxe, so we are both in our 70's now. I am 72. I find myself going to bed earlier than I used to at nite and take short naps in afternoon which I attribute to my age. Just not as perky as I used to be. I am glad you are doing well on brukinsa. Thank you for taking the time to write to me.
I am in bed earlier than usual too but I don’t get to sleep as soon as I’m in bed. I read a bit or watch tv and I pray. I don’t sleep through the night as I used to. I’m up a few times to go to the bathroom but usually right back to sleep. Since I don’t get out to the malls as I did before pandemic , I’m sure that removed some of my perkiness. At this age I’m thankful to be perky at all. lol. Since oncologist has me getting pet scans, I’ve had two , I find that I have other issues unknown to me. Calcification of arteries , mild emphysema and first scan said large renal cyst and cysts on lungs. Each time I get an exrsy or scan I tell them to just look for what I’m there for because I have enough incidental stuff going on. Praying for all of us on this journey and that the meds will give us much longer life.
Hi there, I have been on Zanubrutinib since 2018! Still going strong and doing well. The first two months I had some minor petchia and a few mouth blisters but nothing serious. I have not noticed any fatigue that could be related to this drug. Zanubrutinib has done wonders for me. I have no side effects and feel healthy. I do have an elevated blood pressure but I also had this prior to treatment.
Hope all goes as smoothly for you as well. Drink lots of water and what helped me was to take my medication with my meals. This way I had less heartburn. This too subsided after a few months.
I never felt sick from this drug. What did happen is that my nodes started shrinking, my blood counts started improving and I started feeling better than I had in a long time. 😃 I saw/see Zanubrutinib as a wonderful lifesaver 🛟 that has kept me alive and well. Hope it will be the same for you.
Ellen 🌷
Hello, I am so glad to hear that you have done so well. I have received many responses with positive comments about this drug. I am feeling alittle less nervous about taking it now even though I know some people will have side effects and some won't, i am still encouraged by the many positive results people say they have had. Sounds like you are doing great and still able to enjoy your life. Thank you for writing me
RE: Fatigue..yes, after 9 months on the drud I experirence some fatigue..but frankly at 83 I had fatigue before the drug! I solve the problem with a cup of coffee or a quick/short nap. I started the drug b/c of my numbers plus a very enlarged spleen. Magic..the spleen is bacck to normal!mMy numbers keep getting better. Re: other side effects..I'm particularly careful about crowds, I never enter a store, place or gathering without a mask and this last week I has two additional blood tests to. check my coagulation times prior to having a tooth extraction next week. Overall, I agree with the other responses. Good luck!!!
Hi sbgscdjd, I didn't know the spleen could go back to normal size. Very glad you told me that because I was told my spleen is enlarged too. thank you for giving me information I did not know about.
Hi… I had a great deal of fatigue before I started Brukinsa. Most likely as combination of the SLL and my age. You mentioned you are very sensitive to medications. I am also, and am 86 yo. I asked to begin with half the dose and increase as tolerated. In medicine it’s called ‘start low and go slow’ in geriatric patients. I felt much better on Brukinsa with less fatigue, blood work was great and lymph nodes reducing pretty quickly. I did develop generalized petechiae, and significant bruising,but no nausea, diarrhea or headache. As others have experienced, you may even have no side effects. If you do, consider requesting dose reduction with your physician.
Hi texigal, I enjoyed reading your post. I had no idea that you could request a dose reduction. Thank you very much for the information.
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