Acalabrutinib, NYU, Columbia Presbyterian, and Dr. Nicole Lamanna

[bagelstreet225]

Good evening,

Soon, I will start taking alacabrutinib (also known as Calquence), and NYU is overseeing my care. Could you please provide more information about the potential side effects? While I’ve researched the drug, hearing about people’s experiences adds a different perspective. By the way, I’ve only heard great things about Dr. Nicole Lamaana, Director of the CLL Program at Columbia Presbyterian. I am not looking to change hem/onc but to get a second opinion. She’s considered the ‘CLL/SLL rock star,’ and I would love to have her on my team. Thank you for listening and I look forward to hearing from you.

Pat

[lankisterguy Volunteer]

Hi bagelstreet225,

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IMO - Dr. Lamanna is one of the most popular and competent of the NYC CLL specialists. I describe her personality as a "Soccer Mom." When she spoke to our NYC CLL Society Support Group, she was very warm and caring, and even brought her 2 children along since it was a Sunday afternoon (they played outside our meeting room attended by the Nanny).

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There are 148 past postings that mention her: healthunlocked.com/cllsuppo...

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Len

[bagelstreet225 in reply to lankisterguy]

Thanks, Len

Very Much Appreciated!!!!!!!!

[Sushibruno]

hello bagelstreet225, after going through several doctors I followed my gut instinct and went to see Dr. Lamanna. I never turned back. She has been my “rock star” for the past 6 years. She is truly amazing and has been there for me even through my very high anxiety and depression. The nurses are also amazing. You’ve made a very good choice for a second opinion. I’ve been taking calquence for over a year with some side effects in the beginning of treatment.

[PennyLane2024]

Why is Dr. Lamanna recommending a BTK inhibitor instead of Venetoclax? It is very smart of you to get second opinion. I am near your age and just started Venetoclax which is working great.

[Sushibruno in reply to PennyLane2024]

For me Dr. Lamanna recommended a btk inhibitor due to my very high wbc it was at over 300k. Before treatment. She said that I was at a very risk for tumor lysis syndrome if I did venetoclax.

I have to add the only side effect I remember was headaches and joint pain which I only got in the first few weeks. Coffee it Tylenol took care of the headaches.

[bagelstreet225 in reply to Sushibruno]

Good afternoon,

Thank you for your feedback. I’ve heard excellent things about Dr. Lamanna. While I’m satisfied with Dr. Grossbard at NYU—he’s a fine hem/onco specialist with a great personality and is informative (as a professor, researcher, and director of the hem/onco inpatient division at Tisch Hospital)—I simply want a second opinion. Lamanna talks about a potential cure and so does Dr. Matthew Davids at Dana Farber, Dr. William Wierda at MD Anderson and a number of other leading researchers around the United States.

[Sushibruno in reply to bagelstreet225]

May I ask the reason for starting treatment?

[bagelstreet225 in reply to Sushibruno]

lymph nodes increased

[bagelstreet225 in reply to Sushibruno]

I've had cll/sll, I have sll, ten years, NYU said. I only learned about it because I fell down (hit the sidewalk) and went the ER. I was diagnosed with SLL on May 25, 2023. I noticed enlarged nodes in my left axilla shortly after I got the COVID vaccine, which was June 2021. Acccording to the sonogram (performed August 2021,) it's benign and biopsy was not ordered.

[Alex830 in reply to PennyLane2024]

I also started on acalabrutinib because of risk of tumor lysis, especially because the CLL caused acute kidney failure. My doctor didn’t want to risk my already diminished kidney function.

[bagelstreet225 in reply to Alex830]

Thank you for your response, Alex. This is all new to me. It's a GREAT site.

Pat

[CoachVera55]

Yes she is considered a Rockstar, Congrats! I was on Acalabrutinib 1/2 dose for 10.5 weeks which is a long story. It was very effective but them damn headaches for 13 days were something else. I stayed hydrated but I don’t drink coffee so mines were probably worst than others. I felt serious bone/joint/muscle pain but with movement, they minimized. I tolerated it pretty well but I needed an even lower dose so I went to Zanubrutinib because of its infinite dose reduction options. I went to 1/4 the dose there. Acalabrutinib is the mildest of the three BTK Covalent Inhibitors I believe. You should do amazing since you were mostly non symptomatic if I remember well. When will you start? They say to start on a Monday just in case you have any issues… #GODSPEED🙏🏾

[bagelstreet225 in reply to CoachVera55]

I received the medication Calquence this morning (June 26, 2024) and promptly informed NYU of its arrival. Although I currently have no symptoms, I’ve been experiencing a dry cough recently. This cough has intermittently bothered me for about a decade but tends to disappear. I plan to start taking Calquence today, but I’m unsure whether I can take it alongside my hypertension drug, losartan potassium (100 mg). I’ve forwarded my questions via NYU MyChart and am awaiting a response. Additionally, I noticed that the pills appear smaller?

[CoachVera55 in reply to bagelstreet225]

Wow, it just got real. Be ready to stay hydrated (1 gal minimum of water) & have your coffee if that’s usual for you. Please keep us posted🙌🏾

[bagelstreet225 in reply to CoachVera55]

I'm not a coffee drinker but I like cocoa cola and ginger ale (not great qualities). Yes, I will drink a lot of water. By the way, taste buds are effected?

[bagelstreet225 in reply to bagelstreet225]

quantities, NOT qualities.

[bagelstreet225 in reply to CoachVera55]

Why should you start on a Monday?

[CoachVera55 in reply to bagelstreet225]

It was suggested to start on Monday because any bad reaction would usually happen between 24-72hours & you want to be able to contact your doctor. So during the work week seemed better for access to your doctor. I rely heavy on the Oncology Pharmacist too & she is amazing.

[bagelstreet225 in reply to CoachVera55]

I understand. Thank you.

[bagelstreet225 in reply to CoachVera55]

I also have some gerd and/or postnasal drip. As long as I can remember, I've had to clear my throat. It's more prevalent when I lean back. And when I do, I tend to cough.

[NaturalWaze]

Dr Lamanna is my “rock star” as well and I can’t say enough about her. She is smart, knows everything about CLL, caring, and has a great bedside manner. Incidentally, I originally went to her as a second opinion as she is over an hour away. But after meeting her, it was a no-brainer that she would be my CLL doc.

[bagelstreet225 in reply to NaturalWaze]

I will call her office and schedule an appointment. Thank you,

Pat