Acalabrutinib- stopping before surgery and possible side effects.

[Katie-LMHC-Artist]

I have more skin cancer. I’ve been on Acalabrutinib for a year. I believe I will have to stop taking it for a few days before and after surgery. Are there any side effects when stopping for that brief period? Thanks!

[Justasheet1]

Katie,

I have had 2 basal cell spots removed at different times. I asked the surgeon both times if I needed to hold the medicine and was told no both times that they could control the bleeding and it went well.

To hold it errs on the side of caution and is fine too. I would ask the surgeon.

Jeff

[Katie-LMHC-Artist in reply to Justasheet1]

Thank you! 😊

[Katie-LMHC-Artist in reply to Justasheet1]

Hi Jeff. Yesterday my CLL Specialist at Dana Farber told me to hold the medication for 7 days. This surgery will also require a skin graft. I previously had the Mohs surgery twice in 2011 years before starting Acalabrutinib. The surgery went well. I had the cancer on my leg and ear. The ear was more painful. Thanks for your feedback!😉

[Justasheet1 in reply to Katie-LMHC-Artist]

Katie,

I’m glad you got the correct advice. Your surgery is more complicated than what I had. I hope they get it all out and sorted out for you quickly with great results.

Jeff

[Katie-LMHC-Artist in reply to Justasheet1]

👍😎

[cajunjeff]

I have paused acalabrutinib several times fro different reasons with no problems or changes in my labs whatsoever. I agree with otherjeff that you might not even need to pause, but I would follow your docs advice on that. I might ask my cll doc instead of the surgeon though, or ask them both to consult, as your surgeon may not have much experience with acalabrutinib.

[Katie-LMHC-Artist in reply to cajunjeff]

Thx! I asked the surgeon to consult with my local oncologist who prescribes the Acalabrutinib. The CLL specialist nurse at Dana Farber told me the last time I was seen that I woul have to stop 3 days before and 3 days after if I ever needed surgery. I mentioned that to the surgeon and he thought after the basal removal I could start back up. I’m going to call both the CLL specialist office and local hematologist office today. The cancer is on my nose and they will have to go down to the cartilage and then a skin graft. Thank goodness I still wear masks!!! Thanks for the feedback everyone!!! Your like my third doctor!!! lol!!!😂

[kohelet in reply to Katie-LMHC-Artist]

Why did you let it go so deep?

[Katie-LMHC-Artist in reply to kohelet]

My dermatologist kept spraying and freezing it. I listen to my providers. 😉

[Katie-LMHC-Artist in reply to cajunjeff]

Yesterday my CLL specialist at Dana Farber told me to stop for 7 days. Three days before, the day of surgery, and 3 days after that. Thanks for your feedback!😉

[Panz]

I had my Aorta Valve Replaced and all three doctors told me there was no need to stop the Calquence. No issues at all.

I have had a couple of basal cell spots removed as well as a squamous cell with Mohl surgery…no issues there.

Best you ask your doctors and follow their advice. All the best!

Panz 🙏👍🙂🎄🎅🏻🤶🏻

[Katie-LMHC-Artist in reply to Panz]

Thank you!😊

[stevesmith1964]

HiI have stopped my Acalabeutinib multi times over last 3 years usually for 5 to 10 days depending on the issue.... SCC removal ... 10 days, dental extraction 10 days, Covid ( 3 times) until negative, infections treated with antibiotics 5 Days ish. No side effects, monthly bloods stable ish,, still in uMRD which is checked every 6 months. So no worries

[Katie-LMHC-Artist in reply to stevesmith1964]

Thank you! I feel reassured that I will be fine.

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[OaktownA]

hi, Katie!

My husband has had to stop and start at least twice since he’s been taking Calquence, with absolutely zero side effects at all. I would definitely confirm whether to pause or not with your CLL doc!

Andrea

[Katie-LMHC-Artist]

Specialist said to pause for 7 days. I appreciate the feedback!

[CoachVera55]

I just had an endoscopy & colonoscopy combined procedure & had planned to stop my Zanubrutinib for 1 week. I have been on treatment from April 2023. I stopped Sat/Sun/Mon & procedure was Tuesday. The dual procedure was uneventful even with 7 biopsied areas. However when I got home I had ‘Rigor’ Symptoms. I had to ascertain the cause & it dawned on me how it happened before at this same time period. I can not go more than 4 days without the medication & I do need future major surgery, a Hip Replacement so I don’t know how that will go🤦🏽‍♀️ #GODSPEED🙏🏾

[Katie-LMHC-Artist in reply to CoachVera55]

Sorry to hear about the symptoms. I wonder if going off Acalabrutinib will be different than going off Zanabrutinib. I appreciate the heads up. Thank you! 🥰

[CoachVera55 in reply to Katie-LMHC-Artist]

Nah for me, I had the same response from both Acalabrutinib & Zanubrutinib. In July when my lung infection was left to linger & fester I developed chestpain for the 3rd time in 3 months. I could not continue the 100mg of Acalabrutinib daily after 10.5 weeks. I was having more & more labored breathing & pure exhaustion that I contributed to this new BTKI & I was determined to fight through it.

But in retrospect my CT Scan 6/22/23 showed Bilateral Parenchymal Scarring & the 7/6/23 PFT showed moderate chest restriction. I was going into Pulmonary Edema & could not tolerate the Chest Pressure from my condition & the drug. I was in the ER 7/20/23 for chestpain with documented Chest Tension & was prescribed a Muscle Relaxant. 7/21/23 ENT ordered a tapering dose of Steroids but the chestpain still continued. So I stopped the 1/2 dose of Acalabrutinib on 7/25/23 because how can I ignore chest pain??? By 7/29/23 my body was going into painful lower leg spasm & I felt like I was at risk of a seizure. I prayed & I heard GOD say read the medication insert & on it, it said not to abruptly stop the medication. I then restarted with 80mg of Zanubrutinib & within an hour the pains stopped but the chest pressure was back.

Then with no other options, I took measures into my own hands when it was clear that neither the 2 Oncologist or the pulmonologist would help. But Thank GOD after proper antibiotic treatment for 10 days, I did great for 12 weeks on 80mg of Zanubrutinib except for abdominal lymph nodes returning.

Once cleared by the CLL Specialist team, I increased my dose to 160mg daily of Zanubrutinib. I got an URI, more bone pain, a drop in Plts & a desired drop in WBC. My URI cleared up with prompt Antibiotic Therapy this time, the bone/joint pain is more manageable, Plts rebounded & the WBC are almost within nml range. Even my abdominal lymph nodes have shrunk. I was good & stable until stopping for the endoscopy & colonoscopy screening & subsequent biopsies.

On day 4 right after the procedure my body did that rigor spasm episode & that is when I remembered this same crazy about to convulse feeling. Same symptoms at the same time range, ding ding ding 🛎️ we have my limits.

We are all different but I listen to GOD & my body before anyone. I messaged the CLL Specialist & told her that I needed to take 1 Zanubrutinib to stop the symptoms & will stay on 1 until Saturday when I will restart 2 per day & she said that she agreed. She even added when pushed that research was done on 90% Whites & 5% Asia, then she said that they do not have compelling data on how ‘Blacks’ react to this medication. We are on the same page & I am grateful. I no longer debate anyway, I bring in documentation. I did not go to stage 4 after 13yrs 8mos of W&W & somehow lost my mind, I got this🤷🏽‍♀️

[Katie-LMHC-Artist in reply to CoachVera55]

You sound pretty courageous and a fighter. Sorry you have gone through so much. Usually those studies are only done on white males!!! When doing a study, even though more expensive, it should cover all races and genders! I wish you well and to have better days!🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄

[CoachVera55 in reply to Katie-LMHC-Artist]

Yes I am an RN of 31yrs with 20yrs in Critical Care. My friends say I make a bad patient but that is only to a bad doctor🤷🏽‍♀️.

I listened to them & ended up in the ER 3X in 3 months. Nah 3 strikes you are out. I study & research but mostly I listen to my body. I also go to other experts because I have other pertinent medical issues. I actually don’t have energy to fight so I devised a way to impart information from one doctor to another with the beautiful portal system. I print out my labs & findings for the next doctor & that is helpful.

The Health Care System is very stressed, Covid showed us that so we need to be good informed patients. My friend suggested that I get a journal & I will start one. I seen my life passing before me & no one would listen, never again😭 I just feel like if cancer or covid didn’t kill me why would I let an inept racist doctor kill me. I have the new Iphone & a new 2024 vehicle & plan on out living them both lol 😂

[Katie-LMHC-Artist]

I get it! My best friend and I often talk about being our own best advocates. I agree. Health care took a dive with the Pandemic. I went through 3 PCPs in a year. They kept leaving and retiring. As a behavioral health practitioner with a compromised immune system I made the painful decision to give up my office and strictly do Telehealth. My phone rings all the time with people who are desperately looking for a therapist. There are not enough out there!

I am having skin surgery on Wednesday. I also have to have a skin graft. I did my due diligence and found the best surgeon I could find. When I started going to Dana Farber in Boston my Oncologist treated me like I was 5 and hated when I asked questions or challenged her advice. I decided that this journey was so important to me that I would find an Oncologist that would listen to me and respect me. I now have 2 wonderful oncologists, my local Hematologist and my CLL specialist. Again, we have to be our own best advocates. Take care!

[CoachVera55]

Amen & Thank GOD🙌🏾