Turning to this very informative group for answers while waiting for my follow up visit after recent pet scan. Long story short hopefully… diagnosed in 2008 with cll, Started treatment in 2011 after biopsy of mass in nasopharynx turned out to be CLL related. Had 6 cycles of B& R, then maintenance Rituxan monthly, but was discontinued due to reaction (rash). CLL returned while on maintenace R so Bendamutine added for another 6 cycles. Was in remission till 2017, I opted for venetoclax, drug had to be dicontinued due to adverse reaction and neutropenia, but I achieved remission. In 2019 had another node biopsy in neck, cll related, pet scan numerous nodes above and below diaphragm. The ones in abdomen were causing the most problems, so calquence was started. Calquence lowered wbc to normal levels and shrunk nodes initially. In 2021 after covid, persistent upper and gadtr infections, doc lowered calquence dose, I rapidly lost weight, had night sweats, went thru pet can again, lots more nodes and inflammation from esophagus to colon, wbc increased ans Calquence dosed upped to 200 mgs/day. Have been on full dose for 1 year and now wbc on the rise and all nodes above and below diaphragm are growing. No transformation to Richters.
I am unmutated, 11q, tp53. My disease mostly presents in my lymph nodes. My doc said I am not a candidate for Gazya due to adverse reaction to Rituxan. My question is what’s next? My local oncologist said only clinical trial. Waiting to see specialist at Upenn to see what she has to say.
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ReneeSusan
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We hope your visit to UPenn and a CLL expert is very soon.
There are several targeted drugs that might be suggested by your expert. I believe that Venetoclax/Venclexta is the most likely, with other less common drugs like Idelalisib / Zydelig and possibly an off label use of the recently approved Pirtobrutinib / Jaypirca
{On January 27, 2023, the FDA granted accelerated approval to pirtobrutinib (brand name Jaypirca) for relapsed or refractory mantle cell lymphoma after at least two lines of systemic therapy, including a BTK inhibitor)
Please let us know the results of your visit, possibly by replying to this posting.
Thank you for responding. I had venetoclax in 2017-2018 but it had to be discontinued due to adverse reaction - which was persistent explosive diarrhea. So V not an option. My doc also said Idelalisib not an option. I did recently come across an article about pirtobrutinib and was hoping that might be a consideration. Wonder why my local oncologist did not mention this. She said only a clinical trial, but did not mention which.
I’m on a trial for Pirtobrutinib. I was treatment naive but there are other arms of the trial for people who have been treated before. I’m on the LOCO-305. Also called the Bruin CLL-314 Study. The numbers may be different for people treated before.
Some centers had difficulty obtaining the medication to start the trial. Mine did not thankfully.
ReneeSusan: I am in a similar situation. Have been on Calquence for 3 years 10 months and numbers not looking good last two blood tests. Just had 6 month check up and not good and my CLL Specialist has me coming back in two weeks to get blood tests again and talk about what to do next if blood work is still showing not good.
Just because you had an adverse reaction to one monoclonal antibody, rituximab, does not not mean you cannot try a different monoclonal antibody! I have never heard of this, and would ask that doctor their reasoning.
Please discuss this with the UPenn specialist. People can react to one member of a drug class (in this case, the anti CD 20) and not react to another. It's not impossible to get a rash, but one doesn't say "oh they reacted to one antiCD20, we can't use any of the others". You try the other drug, cautiously, and watch to see. I reacted severely to one BTK drug, and had no side effects to another. I do no understand why the doctor said that, I have never heard of it. And since I got this disease in 2011, I have done a lot of reading! As a former pharmacist, I certainly would have noticed this if it was a widespred, prevalent theory. If one reacts to one drug, one switches to another, *that* is standard medical practice. Cases of true allergy mitigate this, but unless you somehow were tested/reacted with symptoms indicating true anaphylaxis, a different drug is considered.
Hi Susan , It is well known that gazyva has less side effects than rituxan .. i would ask your onc. if you can try it ... it shrank my spleen from 2 1/2 times the normal size to almost normal in about 6 weeks . .. i had a slight reaction the first day but the skilled nurses took care of it with the standard protocol . i finished my ramp up for V and doing well ..... during those times of my treatment it is so reassuring when i know i have lots of people praying for me .. i will pray for you .. blessings , james --- John 16:33
I am treated at UPenn and 11q deleted. I also could not tolerate Rituxan. After my third dose I developed lung inflammation back in 2016. Last year, I did receive three doses of obinutuzumab (Gazyva) and once again developed lung inflammation. My specialist told me if I needed another anti-CD20, they would try ofatumumab. Right now I am on Venetoclax but have also failed Calquence. They have suggested pirtobrutinib as a possible next treatment when needed. I am leaning more towards a CAR-T clinical trial currently being run at Penn. I am sure they will discuss all the options with you. Let us know what you decide upon. We are so fortunate to be getting our care at Penn.
Thanks for sharing Nan. I didn’t know that Upenn was offering Car-T clinical trials. That’s good to know. May I ask how many other therapies you had prior to calquence?
Hi Renee, If you looked at my history as Mark suggested I have had multiple treatments, although a couple were very short-lived due to side effects. My longest medications were TGR-1202 (clinical trial) for a year, Calquence for 4 years, and now Venetoclax for almost a year. It is good to know you and I both still have pirtobrutinib and the CAR-T trial as options. Looking forward to reading your updates
Nan, just happy to know there are some options. I plan to discuss bith with my specialist when I see her in June. Will definitely post updates after my visit.
My CLL specialist is also at Penn and after Acalibruitnib stopped working my cll doc put me on Zanuibruitnib which I’ve been on for 3 years now and I am dose reduced and it’s actually working better than the Acalibruitnib- maybe ask about Zanuibruitnib-it’s now FDA approved for CLL. Best of luck to you.
Davemich, do you experience gastro issues on Z? I have alot of gastro stuff from calquence, which could be why it may not be working for me. I thought I read somewhere that Z caused more diaarhea adverse reactions than Calquence. So I would be a little leary to switch to Z.
Unfortunately I have a lot of GI issues because I have Crohn’s disease for over 30 years and have lost a lot of my GI tract. In 2021 I was diagnosed with gastric cancer and had to have a partial gastrectomy so GI issues are a daily struggle for me BUT the Zanuibruitnib does NOT increase my GI issues. I did not do well with Acalibruitnib - I suffered with GI symptoms and very bad muscle/bone pain. The Zanuibruitnib def has less side effects and is working even with the dose reduction. It’s the 3rd generation and it has been documented to have less severe side effects. We are all unique and these drugs can affect everyone differently but I believe it would be worth a try!
I'm not sure if this could help you, but I also had a lot of GI distress with Calquence. I started seeing an acupuncturist who targeted much treatment for the gastro issues, along with bone marrow, spleen, liver and kidneys. The combination of a reduced dose of Calquence and acupuncture for me eliminated all gastro issues within a few weeks. I visualized the bad cells leaving my body with each gastro episode in the meantime and that seemed to help my mental state as well.
Hello there just curious what is your dosage on Zanubrutinib? I got Pleurisy left untreated went to Pleural Effusion, Pneumonia & Aetelasis after 13 days full dose on Zanubrutinib. Then 10.5 weeks on Acalabrutinib 1/2 dose but this infection untreated led to Pulmonary Edema & no doctor would even order antibiotics. I got some from a friend & restarted Zanubrutinib @80mg daily. Labs are stable but not dramatic. I need my lungs & heart to heal & then we will move up the dosage but I doubt full dose is appropriate for me.
The CLL Specialist wants a 2nd Cardiologist opinion plus I need a new Pulmonologist maybe all at RWJBH instead of SIUH Northwell🤷🏽♀️. I was in the ER 3X in 3 months & that is just unacceptable 🙌🏾
I have been on 1 Zanuibruitnib a day for over a year now and my CLL/SLL is stable. Labs are good, no increase in nodes and feeling overall pretty good. I have many other health issues, so can only tolerate one per day, thank goodness it seems to be working.
Thank you❤️ I just told the doctor that I am not necessarily smart but I am intuitive. I have multiple drug allergies because my body is super sensitive & I listen to my body. I also figured (just my opinion) that Zanubrutinib is strong so if 100mg of Acalabrutinib was doing the job then 80mg of Zanubrutinib would be fine.
But I also have a need to comply & the first Onc kept pushing for full dose usage of whatever BTKI I use. Maybe after 3 ER Visits in 3 Months somebody is taking notice that there is a problem. Both new Onc & CLL Specialists is like no don’t increase until we check you out again in a month (which will equal 2 months @80mg) & Pulm/Cardio chime in. Yes teamwork makes the dream work & maybe I can stop playing doctor & just be a patient 🤦🏽♀️
CLL Specialist was first saying that she didn’t think BTKI was for me because of the changes in my Echocardiograms. I told her that I feel like I am really healing now that I completed this full 10 day dose of antibiotics & she said great. I also asked her if I have an infection will she have a problem prescribing an antibiotic for me & she said that she would not. Because all this fear of antibiotics is new for me. I get 2-3 colds per year & I treat them with antibiotics. I do not want to use IVIG especially since I live alone, mask up & work on Zoom. I don’t come in contact with people. I’m just happy to be heard because trust me I was setting up to see another specialist🤷🏽♀️
Glad to hear they are finally listening to you. I receive I VIG every six weeks and it's been a lifesaver as far as infections. Maybe you should try that not everyone can handle the full dosing of these BTKI inhibitors everyone is different. Why not try the reduced deuce and see if that works for you
That’s wonderful news! If not failing calquence I will ask my specialist if switching to help gastro issues is a possibility. Wishing you much success in your cll journey.
If you are not responding to Calquence/Acalabrutinib, ask your doctor to test you for BTK (Bruton's tyrosine kinase) inhibitor resistance. Pirtobrutinib is a new BTK inhibitor that gets around this acquired resistance.
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blessings , james --- John 16:33
Possible richters transformation?
First Time Post: CLL in full relapse mode + vaccines and Calquence next line of defense. 
Please share experience of venetoclax plus obinutuzimab or acalabrutinib mono treatment in an important survey
