I have nodes particularly in my neck area and one in my chest that are growing slowly. Only the chest node is about 2-3". My wbc has been mainly in the high 50's, my rbc and platelets all in a good range. Lately when I go for my visits he only takes like 2 tubes of blood and does regular tests. I never hear about the things you folks talk about. Now he wants to put me on this mega drug used for high grade cancer like Mantle Cell (!) and I can't understand why he would put me on such an intense pill, with a loooong list of side effects that closely resembles blood thinner side effects when I had such a negative reaction to blood chinners. I'm also missing a sigmoid colon. I've never read of anyone taking this drug for CLL unmutated. PI've been 7 years W&W. He also said it was a new drug. It's been around since 2019! I don't feel good about this. Has anyone taken this and if so did you have a reaction ? I don't know what to do.....
Zanubrutinib My doc wants to start me on this... - CLL Support
Zanubrutinib My doc wants to start me on this when my numbers are good
Hi Jerry's Girl,
Zanabrutinihlb/Brukinsa is expected to be approved for CLL this year. It's a BTK inhibitor with a lower side effect profile than ibrutinib for which we have 10 years of experience. We do have members doing very well on this drug. You can read a great deal about it in my post on this class of drugs, which has revolutionised CLL treatment: healthunlocked.com/cllsuppo...
Neil
Thank you so much ! I will read with breakfast in a minute! It just scares me because the side effects it shows on every site seem to be really bad. But still, shouldn't he be taking tests to check on other things other than a metabolic panel, before he puts me on such a strong Med? I get this inner feeling that he is using me for a Guinea pig as someone in the beginning stages of needing meds to see what happens 😳😳. I've been there before with my thyroid cancer and had terrible side effects from the surgery that I still live with Kerry
Kerry, in general, CLL treatments tend to be less harsh than other cancer treatments and there are much stronger CLL meds than zanubrutinib. You don't lose your hair with CLL treatments for example. BTK inhibitors work fairly slowly and some people don't even experience side effects. With the exception of the risk of higher blood pressure developing, side effects also tend to reduce over time.
It would help to know why your doctor wants to start treatment. You can also ask for a second opinion. However, if your CLL does get to the stage of needing treatment, it's best to start before leaving it too long.
Neil
I believe he wants to start treatment because I am having breathing issues now due to 2-3" node in chest and nodes around throat which are compressing my esophagus. I can see that perhaps starting meds BeFORE it gets bad is actually a good idea and goes with my feelings of catching things in early stages for better remission. This would be the first Med or first treatment I would be receiving. I am also a thyroid cancer and breast cancer survivor. Kerry
Kerry, i started treatment of an earlier version of a BTK inhibitor in 2014 because lymph glands in my throat were impeding my ability to swallow. it seems like you've got similar issues.note that my numbers--WBC, ALC, etc.--weren't high enough to justify chemo in the old days, but my docs and the insurance companies involved all followed the rule that they treat the patient, not the numbers.
And while the side effect profile of the initial BTK inhibitor was daunting--i had lots of problems--the side effects of Z are not nearly as nasty, or as common. As AussieNeil noted, i know several folks who are using Z for their CLL as part of clinical trials and they report hardly any major issues.
By the way, my nodes started shrinking within a few weeks of taking the BTK inhibitor called ibrutinib. They were gone in less than six weeks and never returned.
and that was eight years ago.
Another BTW--Zanabrutinib is powerful, but there are even more powerful anti CLL drugs out there. Stay calm and be optimistic--there are great drugs available to us these days.
Are you still taking the drug ? Are you considered in remission? I am so looking forward to the nodes in my neck/throat and chest, impeding my breathing really bad, to disappear and let me return to a normal life. I'm so glad for you that they did not come back!!!
Kerry, i have been uMRD for almost two years. that means the CLL is undetectable in my blood and probably in my marrow. I stopped taking the venetoclax the day i was declared uMRD. The docs predict it will come back but no one knows when. i could have another 2-3 years before i need to resume treatment.
Do you think you will be prescribed the same Med or would your body be resistant to it since you used it already ? Did doctor agree with your stopping the treatment?God! I love this group !!!!
I am planning on restarting the same med, after a pause. I am taking venetoclax. No reason one couldn't do the same with ibrutinib. The key seems to be, stop before resistance develops, go about your life while the CLL slowly grows back, treat again. My last visit to my CLL specialist discussed this, and what types of patients this strategy is best suited for. I have a really aggressive, hard to treat variant, and am leaning more towards "managing" it since it's pretty resistant to treatments I can tolerate as time goes on, and repeated treatments occur. I am trying to buy time for either new drugs to become available, or if my circumstances change to where SCT/CAR-T might be an option.
I wish you luck and health on your journey, possibly through uncharted territory, which will make it easier for those of us following you ❤️❤️
My hemocs say i would resume venetoclax, but by then there may be a better protocol. Also note that an even better drug, called pirtobrutinib, is in clinical trials and should be approved by then. Yet another approach is a combo--V + something else.
Unlike ibrutinib, the hemocs say data shows resuming V is effective. Note that a small percentage of V patients do develop resistance. If that happens to me, almost definitely move to pirtobrutinib.
The various CLL experts all subscribe to the theory that V is limited time duration therapy. Clinical trials first tested it for 24 months and then cut down to 12 months. i was on it for about 16 months, with my hemocs leading the charge.
Note that one CLL expert suggested i just stop ibrutinib and not bother with V after i had plateaued. I wanted to "graduate" to V in the hope that it would give me a longer respite from drugs/cll.
Good luck to you !! I hope that my nodal issues will respond and I will be in the place where I will be able to discontinue the meds (which I haven't even started lol)!
Best wishes for an uneventful journey on the CLL road.
Thank you so much! 😊❤️
I want to thank you for responding to me. It calms my nerves quite a lot speaking to someone who's been through it. I have no one to talk to right now - endo office closed and on oncologist / hematologist where I live is out on maternity leave until august ! My CLL doctor is an associate of Dr Furman at NYP. Great doc but I don't think a great communicator lol. I'm glad you responded before the text I was going to send out on the portal asking why such a strong medicine. Will still ask but perhaps not so strongly worded !! My problem is even when I have a list of questions I never seem to ask them when I'm there. And having had a minor stroke my retention is not the best. My mom used to come to all my visits but she is 92 now with health issues. She always knew the right questions to ask. My husband drives me but doesn't come into office. He supports me totally, and yet "doesn't want to know". Maybe I can ask him if I can record our initial discussion on my phone and do a virtual initially so as to not have to make the 12 hr day/walk/bus trip in and back home Kerry
Dr Furman is very patient centric and actually pioneered these safer drugs, to replace the older, more damaging chemo drugs. I would expect his colleagues would be similarly focused.
Neil
Yes I agree and looking at videos of Dr Furman talking about the 2nd generation BTK drugs made me feel better as well. Exciting time for leukemia patients !!
Hello JerrysGirl3
I used to type out a list of questions before going to my doctors and just hand it to them when entering the exam room. Received several chuckles, but it works. Blessings.
I do that with every doctor i see and they get more aggravated than happy. My cardio gave me the name of a new drug he wanted me to try. While in the room w/him I looked it up and he said "look at you! I bet you're looking at side effects !!" 😳😡. I mean, really???
If he wasn't happy you are trying to be an informed patient.....ugh. I avoid docs who dislike patients that want to be involved in their own care. As well as those who have a cookie-cutter approach in how they speak to one. I speak with medically trained people differently than those without a medical background. It was really infantilizing & offensive to have a nurse come up to me and start with "now this is what we call a subcutaneous shot, it goes just under your skin" and uncomfortable seeing her blanch when I responded "I brought this experimental protocol into the facility and have done it before, it should be in my chart. Let me explain the least painful, most successful way to do this large volume subcutaneous injection on me." I had numerous problems with them doing it wrong, the drug kept blebbing out onto my skin instead of staying inside my body. A large volume subcutaneous injection needs to be done slowly to avoid causing pain, and one waits a few seconds after injection for the drug to distribute under the skin. Otherwise it backflows out the hole created by the needle. This was a major contributor to this treatment failure IMO. As I was dopey from premeds and didn't have anyone with me to insure these shots were done correctly, I was often too sleepy to make sure it was done right. I remember looking at drug sitting on my arm that should have been inside my body. And repeated talks with the charge nurses never accomplished anything.
OMG that facility *insisted* I do a "patient teaching" session that wasn't covered by insurance & I had to pay for. Since this was an experimental use of a no longer commercially available drug, the nurse educator had to make up her own "patient fact sheet". I took great pleasure at pointing out all the incorrect statements in her "patient fact sheet" during this forced "education" session. Sooooo glad I "fired" them. What's really funny to me, is my current, much admired CLL specialist is in that same system, in another city. So in searching for a doc, don't dismiss a particular facility, look at the individuals. You may dislike the first few you try of a practice group, but mesh well with another in the same group.
Hahahaha! I love it!! You go girl !! Unbelievable how untrained staffing is lately, more so since Covid as the older nurses who knew better, left and were replaced with others who know nothing. Now that I actually have a great primary NYU trained, I'm much happier. He told me that an NYU cardio comes out here every two weeks. We're just waiting for my biopsy results to come back hopefully tomorow. 😳. I'm glad today is a beautiful day in case I receive bad news tomorrow I will at least have this day to remember that life is good. 🥰🥰. I did go to another top hospital and loved the doctor but hated her nurse who was obnoxious and scared me lol. I'm a hard person to scare !! And too much time was taken up by being interviewed by two people before seeing the doctor. Whether they were screening me or learning, as it is a teaching hospital, it was a 3 hr visit and we didn't leave til after the cleaning people started cleaning the floor !! And then a 3 hr car ride home. Also. I can only reach that hospital, which is in my Cancer Resource Services network so everything paid for, by car. No trains or buses go there. It's too much. And current hospital I can take a big bus (with a bathroom !) but then have a 9 block walk. The doctor is good and shows me my charts (other doc didn't and my counts were soooooo off that day that I know she should have said something and she didn't especially when I told her that when my wbc count has been stable at 55-58,000 and it jumps like 10,000 it usually means I'm sick. Well that time it jumped 20,000 and all my other numbers were totally off!!! My current doctor works with Dr Furman directly so I trust him maybe a bit more. Just wish he had her bedside manner. Especially since, with hopefully a CLL or nothing diagnosis on the node in my jaw, I will be starting treatment with a drug newly released for CLL patients. Actually. He'll probably be better because I'm probably one of the new patients with CLL to start this Med. So maybe it's a good thing lol. Oh my. One really has to find the humor in things or we would go crazy!!
I wish I could have seen the nurse's face when you told her 😂😂😂😂
Best to you
Kerry
Do you know if my immune system will be super compromised on this drug, as I babysit my grandson and being he's in nursery school he is frequently sick with colds. 99% of the time I don't catch anything but sometimes I get congestion. My immune system right now is great! I only had two initial vaccines no boosters because the fiery vaccine affected my heart!! And I've been fine. Then again I wear masks and sanitize when I'm out.
Because CLL is such a heterogeneous illness, the degree to which it impacts immunity and how that changes during and after treatment also varies considerably. Broadly, when you are approaching the need for treatment, your immune system is becoming increasingly impacted by your growing tumour burden. Antibody/immunoglobulin production trends downwards and you are less likely to respond to vaccinations or produce antibodies to fight off illnesses. As bone marrow infiltration worsens, not only do platelet and haemoglobin counts drop, but so do white blood cell counts drop (other than the lymphocyte count due to the growing number of CLL cells). Your neutrophil count is the most important of these white cell counts. Also CLL suppresses many immune system functions, including T cell protection, hence our higher risk of secondary cancers.
All CLL treatments can cause drops in neutrophil production, but it's less of an issue with BTKi drugs like zanubrutinib than with other CLL treatments. That effect generally lifts as treatment clears out bone marrow infiltration and blood counts recover.
Personally, CLL hugely impacted my immunity, so I was averaging emergency hospital admissions roughly annually in the 5 years prior to ending watch and wait, plus I needed regular neutrophil booster (G-CSF) shots and weekly immunoglobulin (IgG) infusions. I still need the latter, but haven't needed emergency IV antibiotic treatment in 2.5 years and had my last G-CSF shot 2 years ago.
Wowww! I'm not getting any issues except nodes that are making it difficult for me to live normally. I went for a walk today and was out of breath after walking two blocks! Maybe allergies. Maybe nodes going on a rampage, like something set them off suddenly😳. I have to say, knock on wood, I've rarely been sick since my watch and wait in Oct 2015 and oddly enough attributed it to my high wbc count fighting the infections. Once my wbc went to 77,000, then went down to 43,000 the next day then back to my normal 50's.
😳 isn't thyroid cancer a T cell cancer ??? I already had high grade metastatic thyroid cancer in 2012
This link describes the most common forms of thyroid cancer: cancer.org/cancer/thyroid-c... It's possible but very rare to have a primary T-cell lymphoma of the thyroid gland. Metastatic means it's spread beyond the thyroid gland, so you've done well to beat that.
It seems your CLL can't have affected your immune system that much, which is good. It's the messaging proteins (cytokines and chemokines) from CLL cells in the nodes and bone marrow that mostly suppress our immune system. CLL cells in the blood are fairly dormant, so shouldn't have as much of a suppressing effect.
I meant to mention that BTKi drugs have been shown in a couple of studies to actually significantly improve T cell function. The effect is wider with Ibrutinib, but acalabrutinib has also been shown to have an effect. I haven't seen any studies on other BTKi drugs like zanubrutinib, but I would anticipate that it's also likely to see that immune system improvement from treatment. All CLL treatments are obviously going to eliminate the exhaustion effects CLL has on T cells, but some (not BTKi drugs) can also slightly reduce T cell counts. My treatment had a slight effect on my T cell counts, but my T cells are now the best they've been in 13 years.
Omg. Just got results back. It was CLL!!!! I am so thankful my thyroid cancer has not manifested. I am so thankful.....
JerrysGirl, everything with cancer treatment is relative. Many people with certain types of cancer have radiation, intense chemo and or invasive surgeries. Until recently, the standard treatment for Cll was six weeks of FCR, a chemo drug that can be harmful to our marrow.
The drug you have been prescribed is relatively mild compared to other therapies. Zanubrutinib is just a better version of ibrutinib. I was on ibrutinib and switched to acalabrutinib to have less side effects. I had some occasional diarrhea with ibrutinib, I have really no side effects with acalabrutinib.
It sucks to have Cll, but I feel fortunate to have a cancer that can be treated with a pill a day drug. Your doctor is not giving you this high grade cancer crazy experimental drug. He is rather prescribing a drug when compared to most other cancer drugs, has for most people tolerable side effects and for some people, no real side effects at all and has been proven to be very effective in fighting Cll.
Zanubrutinib is a btk inhibitor drug and very much outperforms most all Cll chemo drugs for unmutated Cll.
Now to be sure, these btk drugs are serious drugs that can have side effects. But they are one of the mildest cancer fighting drugs a person can take. Lots of people on here are on ibrutinib and doing very well. Many doctors consider zanubrutinib and acalabrutinib better and milder than ibrutinib. You are with a doctor group that are pioneers it’s btk drugs. Whatever side effects you get, if any, will likely be way better than the effects of untreated Cll.
Thank you CajunJeff!!
Weird. Just reread your post. Did I mention that I am unmutated ?? That makes me feel even better now reading what you wrote!!
Until recently, FCR has been the gold star treatment for Cll. It’s chemotherapy, perhaps less toxic than chemo for most other cancers. And for a significant number of folks with mutated IGHV Cll, it’s been curative.
Those with unmutated Cll have not done as well with FCR. The cure rate is low and the remissions shorter.
And them along came the new and novel drugs, most notably ibrutinib, the first of a class of btk inhibitor drugs. Ibrutinib labeled the playing field for people with unmutated Cll. In some studies, those with unmutated Cll have outperformed people with mutated Cll while on btk drugs. The btk drug you are being prescribed is a second generation btk that has less side effects but works just as well.
Cancer sucks, and it’s all relative, but having our cancer controlled with a simple pill a day is pretty amazing. Good luck to you, I bet you do great.
To address your "long list of side effects" concerns, I'll mention that during clinical trials, patients are asked to report Anything that happens in their body. So every ache, pain, sneeze, tummy upset, rash, etc. that happens is counted. If large numbers of study patients start reporting the same thing, researchers will start to think this could be caused by the drug.
IMO the confusion and alarm is due to CLL drugs having a relatively smaller number of patients having been studied before a drug gets approved. When only 400 patients taking a drug report a 20% incidence of a side effect, it may not be 100% true after 400,000 people took the drug.
So listing every possible effect helps docs decide, if someone exhibits a symptom, could it possibly be related to the drug, or is something else going on in the body. Not that people taking this drug will definitely have all these side effects happen to them.
And being sensitive/having side effects to one type of medication, does not mean you will have them to other types. Your doc has to start somewhere, and IF you have side effects please discuss any with him. Blood test numbers are not the only reason to start treatment as others have already noted. If your lymph nodes in the neck area are affecting your breathing, that's an indication for treatment no "blood" test will show. He doesn't need to do PET or CT or other tests to verify since you are obviously having enlarged nodes impacting your breathing IMO. And things affecting your breathing/closing your esophagus ARE "bad". So you do seem to have reached the time of needing treatment.
Please either bring a written list of your questions to doctor visits, or send them ahead of time through the patient portal/facility website link (I would assume Dr. Furman is part of a healthcare system with one, most large places do). I prefer to ask my docs things through the portal, I too have some memory issues. I can refer back to the questions and answers, as I forget them. If your provider is OK with being recorded, you will have the answers to your written list of questions on your phone. But sending them ahead through the portal means I won't lose a piece of paper, I will always know where the answers are, and I can spend time at the visit asking for any clarification of the previously sent answers I don't understand. And I don't have to spend time writing the answers down, they are in my portal link.
I'm glad you don't have a lot of the problems we talk about here. You DO have people to talk to, right here!
Yes I do and I consider myself so lucky to have you folks!! You have definitely calmed me down !! Thank you !!
I use an app called Google Keep to note questions I want to ask my CLL specialist. He chuckles when I pull out my list. I find it helpful because I always have my phone with me and I can add things to the list at any time.
I hope whatever treatment plan you embark on works well for you.
As I read peoples responses I'm actually quite excited to start the treatment so I won't feel the extreme discomfort under my neck and breathing issues with node in chest. Hopefully they will diminish in size in a reasonable amount of time !! And my doctors....as soon as I pull out my sheet of notes their eyes open wide and I can almost hear their hearts beating faster as they wonder what the heck shes going to say lol!
JerrysGirl, I had enlarged spleen and enlarged neck lymph nodes. My haematologist put me on Acalabrutinib before it was licensed in the UK. My spleen rapidly shrank back to normal size as did my neck lymph nodes. Ibrutinib, the first BTK inhibitor, had a reputation for some nasty side-effects, acalabrutinib far fewer and I have experienced none other than little blood-blisters that arise in my mouth and then disappear. Zanubrutinib is the latest iteration of a BTK inhibitor so should have even fewer side effects though everyone's response is different. I wouldn't worry about it, I hope it is as successful for you as acalabrutinib has been for me.
Thank you for your feedback and I hope I can get the same results! I'm so happy the acalabrutinib worked so well for you !!
Jersey Girl3, I was on Ibrutinib for 8 months. It was working but the list of side effects I had almost made me happy to be 'sheltered' due to pandemic. Onco doc switched me to Zanubrutinib in September and most of the side effects disappeared while it worked well on the CLL. Only problems I continue to have from it are occasional mouth sores and serious bruising, which is unsightly but otherwise not especially a big negative. I keep up a fairly busy schedule in spite of the serious fatigue associated with CLL. My lab numbers now are close to 'normal'. I hope it is as successful for you!
Thank you St Bon! I am not concerned with outward appearances! I went to my 42nd anniversary dinner with my husband to a very exclusive restaurant with a black eye caused by my 3-1/2yr old grandson's head lol!! Let them look! After my thyroid cancer surgery and neck dissection I told people I was bitten by a shark!!! But my primary care doctor looked at me sideways when he saw the black eye and asked how I got it and I know my story sounded like a made up story lol but it was the truth!! If my husband EVER touched me during our 45 years together I would have been gone the next day with the kids. No second chances on that.
The node was determined to be CLL!! I am so happy! Now we can discuss treatment and I do t have to worry about metastatic thyroid or breast cancer !! Thank you all for helping me through this. I probably won't be starting meds til the summertime so will keep everyone informed. !! Thank God!!
Hi. I take Zanubrutinib. It’s very helpful for me. I have no major side effects like I did with Ibrutinib or Acalabrutinib.
Thank you so much for that information! Makes me feel so much better ❤️❤️
Did you find out you “had” CLL long before it was diagnosed?
Ibrutinib concerns
Needing to start on meds now and can't afford the copays
Acalabrutinib treatment yes or no
Starting Venetoclax mono on Monday
