I began having severe sweats every night. Changed clothes 3 time every night and started sleeping on a plastic sheet as bedding was soaked also. Swelling in neck and always having a metallic taste to anything eaten. But most was the fatigue. Very Very severe fatigue. lymph nodes were biopsied in December 2014 along with Blood Test and Bone Marrow biopsied. Diagnosed as stage 3 CLL/SLL with 11q deletion in January of 2015. Bone Marrow was 80% invaded. Not looking good for the home team. My doctor was very optimistic we could get this under control but said it can never be cured. That brings me to today. After initial relapse from Chemotherapy started IMBRUVICA in 2016 until February 2023. Had to stop due to health issues. After 9 months of no treatment it's back like a bad dream. Pre-Mutation stage so just started Brukinsa, like today. The reason for my post is to ask if anyone has been put on Brukinsa and what has been your experience. So, if you have any input please let me know how you are doing. I had to retire early due to this damn CLL and have done my best to cope. But unless you have lived with this no one can understand what it is like. My life has certainly changed and not for the better. However, I really think it has made me a better person. I see myself as more patient, more observant, kinder to others and more appreciative of all the things around me. Trying to be better in all aspects of my life as I really don't want this crap to win. So, my best idea is to make my life the best it can be and live. I meant really live life to it's fullest ( as much as possible ). So, to my fellow CLL travelers Don't give up, Keep fighting and let the forum know how you are doing. Happy Holidays.
Don't give up, Keep fighting: I began having... - CLL Support
Don't give up, Keep fighting
A lovely post thank you and best of luck to you with your next treatment.
Thank you for your response much appreciated.
Wishing you a good experience with your new treatment, please let us know how you get on.
Thank you for your reply. As is often said, hope springs eternal.
Hi MCarter1954,
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You and I share very similar challenges with our CLL. Others get long remissions from the modern targeted treatments, but our CLL is aggressive, so we need almost continuous treatment, see: healthunlocked.com/user/lan...
and click on "more" to see my long treatment saga.
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BRUKINSA® (zanubrutinib) is the only one of the approved modern treatments I haven't had yet, but many of our members report positive results with fewer side effects than some other BTK's . You can read the 281 previous postings that mention it here:
healthunlocked.com/cllsuppo...
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I would expect you will find it much easier than ibrutinib / Imbruvica - please let us know.
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Len
Len, thanks so much for the link. I really had a rough start on Imbruvica. I actually had to Prednisone to offset the side effects. So, my treatment was Imbruvica and Prednisone twice daily. Your right about this CLL with us, we have to fight madly just to stay even and prevent progression. My outlook on the others that can achieve remission is I hope they still monitor their disease. CLL is a very tricky and nasty thing and will come back with a vengeance. Thanks again for the link and best of luck to you.
MC
Wise words indeed MCarter, and very relevant to many of us at the moment. You seem to have been through rough times, over the years, and I do hope you eventually receive, treatment best suited to you.
Pending a needle biopsy on a large stomach lump, I am expected to start 'Veneloclax' and a' Obintuzumab' infusion Jan/Feb.
I can relate to extreme nights sweat, the last few nights have been like living in a swamp😁
I have no experience of the treatment you mention, but I am sure someone on this Website will, or at least provide some information of value.
You seem to have a positive attitude, and I'm sure you will get through this.
All the very best to you. Ron
Ron, thanks for your reply. Really hate to hear of your stomach issue. Concern over that and starting a treatment regiment must be really weighing on your mind. Veneloclax and Obintuzumab are both very good and tolerated well by most that try that combo. Best of luck to you and just know there are many folks here that can relate to your journey.
MC
Thank's , MCarter, I think being a bottle half full person, (As I suspect you are) helps enormously.
The way I see it, is, if you think positive, there is more chance of positive outcomes. (Works for me)😀
I suspect a plastic sheet can only make sweats worse as it doesn't allow pores to breathe and won't wick the sweat away.
My sweats were possibly of lesser degree but I slept on a large towel and uncovered my feet. The towel needs to have a pile that doesn't crush too much so air can still reach the skin.
I now have a watch that supposedly records temperature. I run at 37°C (98.6°F) while sleeping, near end of cycle 10 of V+O. I don't have a record of temperature before treatment. Temperature while awake is lower 35.5°C (95.9°F). This is abnormal as should be cooler temperature while sleeping.
Skyshark, thanks for the reply. Well, honestly the plastic sheet was more to contain the sweat from going through and drenching the mattress. Without getting to gross with the details, my sweats were so bad I was washing the bedding every day. I was not sleeping directly on the plastic, I too was using towels. My wife was angry at first because she thought I was peeing the bed every night. Man, it was embarrassing and had no idea what was happening. But I got really good at washing towels and bedding. Best of luck to your and your journey.
MC
There is a market, showing here, for 'Towel Sleeping Jackets', that way your sweat is contained below and above. ( I expect they already sell them on E Bay.)😀
The "Towel Sleeping Jacket" seems like a good idea, but looks way too hot to me to endure the sweating.
Thanks for your story McCarter. I have read that 11q cll responds extremely well to btk drugs. It’s good that you quit ibrutinib due to tolerance issues as opposed to resistance. If ibrutinib is resistant to cll, then so probably would be Brukinsa. The fact you might be intolerant to ibrutinib, on the other hand, doesn’t mean you will be intolerant to Brusinka.
I am betting you respond very well to Brusinka. It’s a better mousetrap than ibrutinib, with less side effects.
Good luck. Let us know how you do.
Cajunjeff, Thanks for the reply. Well you could be right about Brukinsa, but the other alternative was 6 months of IV Chemo then Veneloclax. While that might work well the side effects are very unpleasant. So, what devil do you follow. CALQUENCE was another one mentioned but my doctor thought Brukinsa might be better tolerated. Best of luck to you.
MC
The usual IV with Venetoclax is not chemo. It's CD20 monoclonal antibodies, either 1st generation "murine" Rituximab or 2nd gen "fully humanised" Obinutuzumab. These attach an antibody to a protein receptor "CD20" on B-cells. The antibody tells the bodies immune system to destroy the B-cell. The most common side effect is an infusion related reaction on first dose as a lot of B-cells a killed very quickly.
Chemo damages the DNA of all dividing cells, skin, hair, nails, gut lining.
After more than a year I’ve had no trouble tolerating Calquence except some initial nausea. I eas careful to take it with food initially but that isn’t even an issue now. And my WBC and platelets are both back in the normal range. The cost however is beyond ridiculous.
I couldn't tolerate Imbruvica so was put on Brukinsa about 4 months ago I have had the drenching unbelievable sweats for 2 years May have slight decrease in sweats ( by the way Gabapentin helped with sweating a little ) Have had some significant knee pain but I also have some arthritis which may be the main cause of that So I'll keep u updated easier then Ibrutinib for sure
Islandvibes, Thank you for your encouraging reply. It is odd looking back before CLL and seeing all the little things I took for granted. Like all the walks I did not take, I will do that later. Doing things with family, I will do that later. Going on vacations, having new experiences, I will do that later. Well later is now and all those things I put off have become very difficult if not impossible. All this messed with my head and I had my pity party then put all that crap on the shelf. New dawn new day and get on with it. I too have pain all over and some days the pain and fatigue just make me want to shutdown. But, I don't. I force myself to get up and move around, get my wife her coffee, put on some music take my meds and do something silly like waltz around a room ( very slowly and stupidly ). My point is doing something silly that I can laugh at myself over makes me feel better. I too have knee pain after two ACL/MCL surgeries, I understand your pain. I don't know if anyone else faces my issue with getting mad at myself for being the way that I am now. The impact this CLL has had on my family really weighs on me sometimes. I blame myself for limiting what we can do and can not do based on how I am feeling. I know I am not the same physically present husband I was and not the same physically present father that I was. So, I really try hard to deal with those feelings by reminding myself this is not something I asked for and it is not my fault. I am blessed with a loving and understanding family however that does not make up for what I feel they lost because of me.
Please take care of yourself and I would greatly appreciate what your experiences are with Brukinsa and how you are getting on.
MC
You talk, my talk, MCarter, and I can absolutely relate to everything you said, about, how our mind's deals with this.
I have always been a 'Worse Case' scenario type, as I feel that once I have accepted that, things can only get better, not worse.
Every day I wake up is a bonus, as I never expect to. I find humour in everything I do, and, and I don't mind 'Taking the Mickey out of myself, and encourage others round me to do so as well.
It lightens the atmosphere, and usually generates much mirth and laughter. I do appreciate that this approach is not for everyone, and I accept, and respect that.
But it suits me fine😊
Vindicatrix, Thank you for sharing your way of coping. I absolutely understand your point of view and simply feel you need to do what is possible to make yourself laugh and accept what makes you happy.
MC
Goodness--how much you have been through and are going through and as I read, I kept marvelling at your response to it all.
You wrote "I know I am not the same physically present husband I was and not the same physically present father that I was. So, I really try hard to deal with those feelings by reminding myself this is not something I asked for and it is not my fault. I am blessed with a loving and understanding family however that does not make up for what I feel they lost because of me."
You are right--CLL is NOT something you or your family asked for and is no one's fault. Family have not lost out because of you but because of CLL. CLL affects everyone--you and all around you, and to a greater of lesser extent we all have a choice about how to react to it. While the drugs directly influence the disease, how we and our families respond to what is happening also has an effect. It is also normal for us and/or our loved ones sometimes to get fed up with what the CLL . What is important is to remember that it is the CLL who is the culprit --not us nor others.
I write this both from my own personal experience --but still only on W and W, and from years of working in a mental health hospital as a Family Therapist where keeping in mind that the 'problem is the problem, not the person" can be most useful. Eleanor
JEEA, Thank you for your reply. Thank you also for your very thoughtful insight into this experience. At first diagnosis I became withdrawn and felt alone. Also, I felt relieved to finally understand what was happening to me. Better to know than the uncertainty. Prior to the diagnosis my family was constantly frustrated with me because I was not able to be the person they had always seen as strong and able to leap tall buildings with a single bound. It hurt me so much to see that in their eyes and the things that were said. The weight of their disappointment and the disease effects on me was unbearable not to mention the stress of a very stressful job. What turned out to be a very bad day was also a godsend to me. My family life did a 180 once they understood what was occurring and became more supportive than I could have ever hoped for. I was able to open up to them and share how I felt and what I could and could not do. My life became 100% better with their understanding and support.
Without their love and support I really don't feel I would have the outlook I do today.
That is where my life moto came from, Don't give up, Keep fighting there is something better waiting on the other side.
You see it is a common misconception that CLL/SLL are seen as the same thing and may be for some with one or the other, but not me. I actually have both, am treated for both and monitored for both. Luckly for me the treatment is the same for both. Some months I will get bad Labs for one or the other and at times for both. At present the SLL side of things is kicking my butt. But through it all I feel blessed to have all that I do. There are so many much worse off and I feel deeply for them.
MC
sorry to hear of your situation but I love your positive outlook.
I haven’t had night sweats but there are Kylie sheets (cheaper ones that are similar on Amazon to trial) that are fabric that can absorb fluids so I presume sweat too that is taken away from the skin up to a litre or more - they may be better than plastic sheets?
Best wishes J
Byblos, Thank you for your reply. I will surely check that out. Best of luck to you also. Being positive is really all we can do to keep our heads and hearts from getting to far away from who we really are as a person.
MC
New Year, new challenges to fight,, new treatments to get better , new hopes to WIN, new life to enjoy. Wish you the very best of health, and early remission. 🙏
AmCLL, Thank you for your reply. Very well said. Hope and positive outlook will brighten the darkest day. I just feel there are many folks much worse off, so who am I to complain.
MC
What a heartwarming post showing courage and consideration for others. Yes, each and every one of us must make the very best of the hand dealt and deal with each day one at a time. My hubby is the one with CLL but I have my own heart struggles and, like you, I hate it but won't let it beat me......ok I know we never win as such but we will not give in or up without a fight. Good luck my friend hugggggs
opal11uk, Thank you for your reply. Best of luck and health for you and your hubby. You must take time for yourself through all of this, please. Being a caregiver is not given the credit all of you deserve. Being a caregiver with your on health struggles is double the heartache and stress. You are right we cannot not really ever win this as such, but rejoice in every small victory you can achieve. Life itself is uncertain and must cherish everyday.
MC
Be strong x
I just read all the replies. My heart goes out to you. I’ve been on Acalabrutinib for a year. I still wake up with headaches. I’m drinking a cup of coffee as I write this to manage the morning headache. I occasionally have night sweats and have to get up and change my night clothes and then sheets in the morning. Bybloss999 mentioned certain sheets that are absorbent. I’ll also check out the sheets. I had to start working P/T due to fatigue. I work at home therefore I can manage the fatigue with quick naps. We are all human. I have my days that I emotionally struggle with this disease and then I work on have gratitude for my life and those who support me. I honestly let go of some negative people in my life to focus on having more peace. I love being around people who make me laugh. It’s good medicine. My spouse passed away years ago. I have a big family but it is one of my sisters who is extremely supportive, checks in with me everyday, does energy work on me and tells me how amazing I am that I try and continue living my life. This site has been extremely helpful for me with support. I am a behavioral health therapist and this is my go to for my morning therapy. I will keep you in my prayers that your struggles become less and that you do well on the new BTK drug. I wish you a healthy new year!! 🎆
Katie-LMHC-Artist, Thank you for your reply. I could not identify with your outlook more. We must be positive but we are human and fallible while living a life that only someone with this damnable disease could understand. We have to be forgiving to others that just don't get it, compassionate to those that have a debilitating illness (as all should) but most of all protect ourselves from people that distract us from our well being. Please remember this is our new reality, not everyone will or can understand who we are today.
Make everyday your best day yet. Read a book, listen to music, dance around the room what ever makes you the best you today, one day at a time.
Best wishes and luck for your health and happiness.
MC
I think you will do well on an inhibitor, and you will see results quickly. When I started Ibrutinib back in 2019, my symptoms disappeared overnight and my lymphocytes dropped from 124 to 12.4 in 18 days. Not everyone sees the same results, but it will be better for sure. Also talk to your consultant about combining Zanabrutinib with Venetaclax. I know there are trials with Z+V, and Ibrutinib +V has lead to very deep remissions for many on that arm of the flair trial.
Diagnosed in 2012 and on WW developed symptoms similar to yours and those of many others. Like you I began on Imbruvica, and when my labs came down to close to 'normal' came off it. Yes there were side effects, but worth it to get the CLL under control. That began and off and on treatment with a variety of meds, some with unpleasant side effects, some with few. About 2 years ago I began Burkensa/Zanibrutinib along with its serious fluid intake requirements and have had great success with only side effect being serious easy bruising - more like leaking. My labs have been in the normal range for close to a year and we decreased the dosage to 3/4 which helped with the bruising and the effect decreased a bit. I am 80 years old and do volunteer work about 25 hours a week, mostly in 4 -5 hours pieces. Wishing you similar good fortune with BRUKENSA and a happier New Year.
StBon, Thank you for your reply. Your volunteer work must bring you such a sense of enjoyment by helping others. I always see life as there are so many others worse off than I. I am grateful for everything in my life. Wish you the best.
MC
I started Brukinsa Aug 28th of this year. I was so worried about side effects. But, I have done very well on it with zero side effects. My ALC was just above normal but my Dr wanted me to start it right away because in May of 2021, I got meningo-encephalitis caused by the CLL. Reading thru your post and everyone who responded is so uplifting. One person said the issue was CLL, not you. I have a retired neighbor who was a naturopath and she always says don't say "you". She has helped me in more ways than I can count! And just like you, even though I have been thru so much, I feel so fortunate! I have the absolutely most wonderful and supportive husband and family and friends!
My ALC isn't in the normal range yet, but it has started going down (after initially going up). I'm 13q mutated.
MyCLLJourney, Thank you for your reply. I was hoping someone like you , that was on Brukinsa, would reply. My initial starting of Imbruvica was very rough and was concerned Brukinsa would be the same. You and one other responded that they had done well thus far.
I wish you the best of luck with your journey. Looks like you, just as I, have a wonderful support system and can always feel blessed by what we have. There are so many other CLL travelers not so fortunate and I really feel for them. I for one, don't know where I would be today if not for those that love me and support me in this.
MC
I hope you have a good result from the Brukinsa. Of all the BTKs, it seems the easiest to adapt to. I had high blood pressure with the first BTK med, unrelenting headaches with the second BTK, then switched to Zanubrutinib a year and a half ago and have had no bad side effects and blood tests are now pretty normal. Hope it works the same for you. It seems to be working quite well for many others on this forum as well. Pirtobrutinib seems to be the next related treatment that several people on the forum have taken with good results. Will keep that in mind should the Brukinsa stop working. Hope this helps.
Mogal, Thank you for your reply. Thank you for sharing your story. I really do take all this info in and write it down so that when I study up on these other treatments I can talk to my Oncologist with some insite. Best of luck to you.
MC
best wishes 👍🏻!
I've been on Brukinsa since late August. It works very well, but I have experienced side effects. It started with intense itching, and bruising. I still have some bruising and sporadic itching. The worst side effect is joint and back pain, and foot pain. It eases if you are constantly moving, but if you sit for a while, then get up, it comes back. Then it goes away again once you start moving. So, I don't have it while I'm at work, but when I get home and sit down, I have it. 🤔Brukinsa is a life saver, and I'm willing to put up with the side effects, because it works so very well.
YAMTSSFA, Thank you so much for sharing this. This is exactly what I need to know. Most of the time you can only find out the truth by others, like you, willing to share their journey. I have only been on Brukinsa for a few days so cannot tell anything different as yet. But have had severe back and joint pain from Imbruvica. I was on that for 6+ years. It controlled the CLL progression some but never had Labs that were great, just good enough.
Best of luck to you and your journey, keep fighting.
MC
I developed a hematoma with Calquence and a hematoma from Zanubrutinib. BTK inhibitors don’t work for me. I was successful on V/ O. We all react differently. I am also 11Q.
bayside64, Thank you for your reply. Very sorry for your difficult journey. So glad you responded to V/O. If Brukinsa does not work for me, my Oncologist said V/O may be next step. Thank you for sharing your story. It looks like we all have a story to share that may help others. Best of luck with your fight.
Wow, don’t give up, keep fighting should be our theme with the ROCKY music playing.
I was treatment naive & started on Zanubrutinib full dose. I had to dial it down to Acalabrutinib 1/2 dose & then Zanubritinib 1/4 the dose while my body healed. I am now up to Zanubrutinib 1/2 dose with a great lab response, however I do still get infrequent night sweats but nothing severe. I will just feel moist around my breast when I go to the bathroom in the middle of the night.
Zanubrutinib shows shrinkage of lymph nodes along with the near normal labs. I just have a hard time dealing with the side effects, Upper Respiratory Infection sensitivity & Platelets drop when I increase the dosage initially. Its the bone pain that is worst for me & I haven’t been able to return to my intense level of working out since April & put on 20-30lbs. I have multiple job related orthopedic issues so its just all compounded. MRI Jan 4th, so we will see🤦🏽♀️
Prayers for great success with this great medication, Zanubrutinib is the truth💪🏾
CoachVera55, Thank you for your reply. We have so much in common, unfortunately. I truly understand how you must feel. Thank you for sharing. Every CT scan I have every 6 months show enlarged lymph nodes and every Lab test shows Platelet drops and severe Anemia.
Constant worry about what that chest congestion and tightness might progress into. The bone and joint pain that even my doctor cannot explain, but it is real and debilitating. When I was first diagnosed in 2015 I weighed 320 pounds. I am 220 now without trying to lose weight (but I needed it). I can tell when something is about to happen because I lose 10 pounds. Then life goes on. I wish you the very best of luck with your fight, don't give up.
MC
Yes I definitely agree about the respiratory distress & skeletal issues being anxiety provoking situations so I do what I can & leave the rest to GOD. Unlike the Onc, Pulm, Cardiac, GI or Orthopedic, I look at my whole body & I know that the weight impacts it all. I need the steroids to breathe though so it can be a vicious cycle. The Symbicort 1X per day seems to be working too.
I will get more active since its been an 8 month medication adjustment period & I think we got it finally (1/2 dose). I may be able to go full dose & we will proceed slowly as we continue to monitor my response after each dose increase to determine that. I must lose this weight with some cardio & weight training as tolerated!I have a whole homegym so I got this…
#GODSPEED with your situation too, no retreat & no surrender 💪🏾
CoachVera55, Really nice home gym. Please continue to treat yourself well. We need to remember this is a marathon not a sprint. Even if you can only do a few reps of anything it will give you confidence and most of all a sense of doing something to make yourself the best you can be. Your getting the treatment dialed in will most certainly be to your advantage. Not sure how, but your need for steroids to breathe, may be your big challenge here. Steroids can cause weight changes that you may need to just accept as your new reality. I truly hope for you to see the new year bring better health, better sense of well being and the best of years to come.
Stay strong.
MC
Hello MCarter1954,
Its my understanding that with your history you should be put on Venetoclax pills. It works in an entirely different way then BTK inhibitors. It disables a B-cell protein called BCL2. It was design specifically for CLL and has achieved considerable success.
Producers, that you for your reply. No disagreement with your assessment. However, my doctor said that treatment required 6 months of IV Chemo before Venetoclax was advisable.
Just can't see spending six months in hell to get to Venetoclax unless Brukinsa does not work.
Best of luck to you.
MC
The 6 months IV with Venetoclax is a CD20 antibody drug and it is given for the first 6 months of Venetoclax, not necessarily before.
I have done the Zanubrutib as well as other BTK inhibitors. I have had a reasonably good experience on Zanu. I have also done the Venetoclax/antibody infusion combination and I found this easier to tolerate than BTK inhibitors which is typical per my doctors.
I still have a surplus of towels from my sweating days, glad I’m no longer ringing those things out multiple times a night. I wish you success on the Zanu, for me, it has been far superior to the prior BTK drug I was on
flipperj, Thank you for your reply. I am with you there, It is hard to believe a person can emit that much water. My wife was sure I was peeing the bed multiple times in one night. After that presumption was proven wrong I had to find a way to keep from washing all the bedding everyday. So, a plastic sheet with several towels was my answer. Still had to do three changes of clothing and 4 towels daily. Thank you for sharing your journey. Started Zanu a few days ago. So far so good. Much better than my starting Imbruvica in 2015. Best of luck to you and wish you better health in 2024.
MC
McCarter1954, I love your message of "Don't Surrender, EVER!" It is a great encouragement to all of us. 🙂Sandra
Phil4-14, Thank you for your reply. Best of luck to you and yours for better health and happiness in this new year.
MC
I just finished reading all of the replies. Very uplifting and upbeat conversations. Good luck to all of you and very Happy and healthy New Year 🎉🥂
Great post! The bright side is this crazy disease makes us appreciate the gift of life a little more
joneill77, Thank you for your reply. Yes, it surely does. Once you get through your initial shock and mourning for your old self, you pick yourself up and decide to live every like it is your last. It can help you see the world differently, more vivid. This really happened to me this way, I am a better person now because of CLL/SLL. I take nothing nor anyone for granted anymore. Best of luck to you and may 2024 bring you better health and happiness.
MC
Hold strong. I admire your resilience and positivity and how you are becoming a better person. I hope I can learn from you and I feel just by reading your post I can strive to be a better person too and learn to appreciate life more like you are doing. I needed to hear that even though life is harder it's still possible. Thank you for being so open and for giving me hope as well as a renewed sense that I need to strive to enjoy the little things. I hope nothing but the best outcome for you and continued journey to better health.
Startnewlife, thank you for replying. CLL/SLL is life altering and is a pivotal moment in your life. Are you going to let it spiral you down or up? Please don’t be afraid to grieve for what has happened. That is something you should/need to do then assess your life circumstances and do something you always wanted to do. Start to do things that make you happy or more fulfilled , be a little selfish for yourself. It doesn't have be to be big, even something you have been putting off. Music is something that can help (but it needs to be upbeat). Take a walk , ride a bike, bake cookies and take an indulgent bubble bath. Sound and smell is something that reminds us of better times like when life was at its best. Slow down and listen or try to notice things you took for granted. For me it was do something for someone in need. Try to do one unselfish act as often as possible. Be present in all you do and you will be amazed how much better you will feel. Best of luck to you. Reach out if you need a shoulder, you will have those days just don’t get stuck there. Life can be beautiful if you open yourself to all that is around you. MC
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