This is primarily an update on where I am on our broken road, as I've been posting since my diagnosis in March 2018. I'm also curious to receive input from others who started their first treatment on Zanubrutinib.
My six month evaluation took place at Dana Farber on September 11, and I finally heard the words I honestly never wanted to hear. After almost six years my Specialist said: Carl it's not too early to start treatment". She felt I should start when I returned home to Florida that month, but I got home and asked if I could wait until Jan 2024. I did post about that decision, and how it had to do with the upcoming change in Medicare Part D for 2024. She also wanted me to start immediately upon getting home on IVIG, and that I did give in to and had my first Infusion on October 1. Thank God I started the IVIG, as I haven't gotten sick yet since that first monthly infusion. In fact my energy level and stamina have improved a lot, likely due to other peoples antibodies fighting now for me instead of my own bodies energy being wasted on defense it couldn't uphold.
The usual indications for treatment were not there, meaning RBC and Hemoglobin levels and Platelet levels. My Hemoglobin is now at 11.9 and Platelets 129, so normally the decision would have been to stay Watch and Wait. The reason my Specialist felt it was time has to do with the massive increase in numbers and size of Lymph Nodes in the Chest, Abdomen, and Pelvis; in addition to, the big increase in size of the Spleen and pains in the abdomen. The Spleen is at 20.5 cm and the lymph nodes have gone wild. I also finally let her know that I've been having greatly drenching night sweats every night for about half a year. The night sweats got so bad that my wife changes the pillow cases and sheets daily, and she put a pad under the sheets also. I hope I didn't put myself in danger by waiting from September until I start the Zanu on January 1, but despite slightly increased pain in the abdomen I seem pretty good.
I'm a bit frightened about starting the Zanubrutinib, because it is my first treatment since diagnosis. I'm not sure what I'll experience as far as side effect; nor, am I sure what are the really bad things that might happen. I've seen some comments over time from our members who went on Zanu, and I think most were pretty good about limited side effects. I gather from seeing my local Specialist here in Florida the other day, that Zanubrutinib seems to reduce greatly the lymph nodes and Spleen; so, hopefully, that will happen with me. My abdomen seems to be much more extended, as if I was too fat, but my weight has actually gone from 255 to the current 216 in about a year (I'm six foot on the nose).
I'd love to hear from those of you who started their first treatment on Zanubutinib, and what you experienced. My local Specialist scheduled me this Wednesday for a one hour Medication Training session, so I'm sure I'll get the full input on what to expect with side effects, but I still want to hear from our group too.
Carl
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62Panhead
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Hello panhead, I started on ibrutinib five years ago and switched to acalabrutinib a couple years ago. These are similar drugs to zanubrutinib. Like acalabrutinib, zanubrutinib is a later generation ibrutinib (btk) type drug, which works as well as ibrutinib, but with less side effects.
The odds are excellent that you will respond to zanu and do well. It will likely flush your cll cells from your nodes at first, causing your wbc to rise. After a few months there’s a good chance your nodes are all gone, or greatly reduced and your wbc will be headed towards normal. Especially as a first treatment, these btk drugs work remarkably well. The side effects from zanu, if you have any at all, are usually mild to moderate. I tolerate my acalabrutinib quite well.
Good luck with your treatment. Why panhead as a handle, by the way? Are you a cook? Wife hit you with a pan? It’s kind of a panhandle of sorts.
Actually this post was from me, as I explain in a short reply down below. I met 62Panhandle while helping him during the recent Medicare Annual Election Period. Turned out he too has CLL and was very recently diagnosed. He of course had a lot of questions, which I began to help with, and then I helped him set up an account on our site. I forgot to log out after setting up his account, so when I placed this recent Post it came out under his handle.
He said Panhandle has something to do with motorcycles. That's why I searched for a motorcycle picture for his icon.
I feel like I’m becoming a spokesperson for zanu, I think a lot of people are switching to it due to possibly less side effects. I’ve been on the stuff for three months, and my nodes melted away in the first week. My wbc went from 200 to 250 (spike) to 180, and should trend down more at my next visit. I have pretty bad markers, and will be mixing in venetoclax soon.
I had some aches and pains in my ribs the first month, some red flaky skin, and that was basically it. I haven’t had any cardiac arrhythmia, which is probably the side effect to look out for with a btk.
Anyway I’m sorry you’re starting treatment, but it’s been a relief for me to start a plan, and see my numbers go down. I would not stress about the zanu, seems like a winner thus far for me.
Sleeping arrangements for night sweats, sleep on a large towel, uncover your feet.
The risk you are carrying by delaying treatment depends on your genetic markers. eg: From MURANO trial of VR for R/R "NOTCH1 mutations promote CLL cell proliferation and are associated with inferior outcomes with CIT, single-agent venetoclax or ibrutinib, and higher risk of transformation".
As it's taken nearly 6 years for you reach treatable stage that is unlikely to be you.
But unless it was your choice from a range of treatments, starting on continuous BTKi would also suggest you are not an "easy to treat" IgHV mutated with no deleterious markers.
I'm IgHV unmutated, ATM del, SF3B1 mut and had bulky lymph nodes. The lymph nodes found by CT scan were a major concern for my doctor, I had a biopsy and PET scan (wrong order, biopsy should be on lymph gland identified with highest SUV, not the biggest by CT scan) to rule out RT. After the possible need for R-CHOP had been removed I was offered "a year and done or tablets forever".
The problem I have is taking BTKi to progression results in being ineligible for re-treatment. More double and triple drug therapies are being trialled and will not be available to those that have progressed on BTKi. The only non covalent BTKi has a median duration to progression of 16.9 months.
I'm sorry for the confusion on the Post, it was from me Wizzard166.
I recently met 62Panhead and found out that he too has CLL. He had a lot of questions, as he is very recently diagnosed. Aside from giving him my input, I helped him form an account with us on Healthunlocked. Then I forgot to log out of his account, so when I put my latest post up it came out under his name.
Hello 62Panhead, sorry to hear that the day you dreaded has come. I was 13yrs 8mos on W&W diagnosed at just 43yrs old, so it was dreadful to hear any of it then too.
I started with full dose Zanubrutinib April 24, 2023 & was in the ER 13 days later with chestpain. I was so concerned about putting on weight since I just successfully lost 85lbs with nutrition & fitness changes. I did a semi intense cycling exercise for 60mins & that started my downward spiral. I had a total of 3 ER visits in 3 months. I had to reduce to 1/2 dose of Acalabrutinib & then 1/4 dose of Zanubritinib for 3 months until heart & lungs healed. Because of the inability to workout I put on 20lbs, again what O dreaded. However I just started 1/2 dose of Zanubrutinib in my 7th month & back to low intensity workouts.
My numbers were always good & decreasing on any dosage I took but I did feel my abdominal lymph nodes growing on the 1/4 dose. I actually love Zanubrutinib because its very effective. My enlarged neck lymph node which was growing for 10yrs shrunk in 3 days. I think its a straight miracle drug but you must manage the side effects.
I read the medication insert & its the holy grail for me. I know that hemorrhaging is the first concern & I did notice a larger than usual hematoma on the 5th day & a drop in my Hgb from 10.8-10, WBC 89-118 & Plts 76-108, all as expected. So no lasting issue with that for me but I did suffer from the 2nd side effect of infection. So I stay very vigilant with an exposures. I had the additional fatigue, body aches, sore mouth & feet burning but they have minimized.
All in all, tho I wanted to be in the 30% who never needed treatment Zanubrutinib is very effective & usually well tolerated. I suspect that you will feel back to normal very quickly on this drug. #GODSPEED🙏🏾
My hemoglobin was down to 7.0 in April this year which is very low and I had a transfusion. I started Zanubrutinib then. Hemoglobin went up some after two weeks and continued up to 11.0 now. My WBC went up from 70K to 100K the first month then went down to 14K now. I haven't noticed bad side effects from it. It is a blood thinner though. I've had several hematomas because of this and one took several months to disappear. I consider it my miracle drug.
Been on zanubrutinib almost a year as part of a combination-therapy clinical trial, and my first three months were just on zanubrutinib.
It had a positive effect on my ALC counts, which started around 300 but were down to roughly 150 three months in. Other blood work was not always positively affected but did not get worse.
Side effects were manageable for me but do vary among patients. I have had some mild GI effects and skin issues, petechiae and some skin rashes requiring dermatology treatment. Some joint pain, that comes and goes. Fatigue. My doctors spend a lot of time arguing about the causes of all this but the ones I trust the most chalk this up to cancer treatment side effects.
That having been said, it is definitely "manageable" and should not stop you from starting treatment. Most of this is grade I-III stuff, not IV or V. And it beats the hell out of chemo or bone marrow transplants.
The main thing: it will rapidly help your current symptoms. Spleen swelling, lymph swelling, and night sweats should all subside relatively quickly. Concentrate on that part. It's nice to be able to sneeze without doubling over in pain!
Also - don't mess around with the spleen. If it gets much larger, laceration or rupture is possible. I only had a grade II laceration and it hurt like hell. We have board members who have gone through rupture. This is very much not recommended.
Hello I was diagnosed with CLL in Dec 2022. On W&W for 9 months. Oncologist put me on Brukinsa, zanubritinib and after two weeks WBC went from 5500 to 11000. After 4 weeks WBC is in normal range and other numbers looking better per oncologist. Lymph nodes are now reduced to normal size. I’ve had very minor side effects . I take 4 capsules daily. I had really bad allergies from mountain cedar and doctor had me reduce dosage forc7 days while on antibiotics and then increase to normal dosage. I won’t see him again until 6 weeks. He decided it was time to start me on meds because of my anemia. It’s improved but still considered low. I was very apprehensive because I kept reading of side effects of the btki blockers. I’m reading thst newer blockers have least side effects. At first the doctor was going to put me on Calquence but decided at my young age of 78, I needed something said to be milder. We just pray and follow advice of those who are the medical professionals.
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Starting treatment in January
To start treatment or not? Please. 
CLL treatment
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
