Coming off Calquence after 3 Years. The reason is I had a pain in my chest like some one was stabing me in the chest

[Wgsljs]

Coming off calquence after 3 Years every thing was good I was told I was in remison . The reason I came off was a pain in the middle of my chest felt like I was being stuck with a knife. I spent 2 days in the er they ran every test that they could run and everything was good normal. It has been 5 weeks and still the pain when I breathe in Wondering if anyone else has went threw this

[DriedSeaweed]

I had an incident like this that happened on Halloween about 12 years ago. I will never forget it. I woke up with restrained breathing and couldn’t move because of the stabbing sensation. I had to phone someone in the other room to help me up to go to the ER. I stayed overnight at John’s Hopkins and it was decided the incident was likely viral. They never pinned it down with proof. I was in my 20’s and no CLL at the time.

Are you 100% sure it was the calquence? Perhaps there is something else going on they could keep investigating? If it continues long after calquence I would start to wonder if it was ever the problem.

You might get a nice drug holiday. If you need to return to treatment is Brukinsa an option?

Also, if you lock your post you may get more responses.

[cajunjeff in reply to DriedSeaweed]

DS, its a good question, however, Calquence and Brukinsa are different (although similar) drugs. They are both second generation btk drugs, new and improved versions of ibrutinib.

The good question you raise is that if we stop a btk drug for reasons other than resistance, can we rechallenge with the same btk drug if (and unfortunately most likely when) our cll returns? I think the answer is yes, we can try the same type btk drug again.

Which leads to another question. Will the same or similar btk drug work just as well if we resume it, or in pausing the btk drug did we allow our leukemia to become harder to treat by taking the pressure off our cll? Put another way, would we have been better off not pausing?

As someone who is interested in taking a break from 3 yrs of calquence, I am very curious as to the answer. I plan on posing the question to my cll doctor directly when I see her next month. I think I know her answer though. I suspect she will tell me that no one really knows for sure yet and that in the meantime our doctors will make decisions as to whether we pause btk drugs on a case to case basis.

I think in Wgsljs’s case, his/her apparent intolerance to calquence forced the doctor’s decision to pause Calquence . At whatever point Wgsljs has a cll recurrence, I would not surprised if Calquence or Brukinsa is tried. Brusinka is just as effective as calquence, with a slightly different side effect profile. My doctor has the harder decision to make, if I am tolerating calquence okay but still having some side effects, can I safely pause it to take a break from cll meds?

Calquence and Brukinsa are both covalent bonding cll drugs. If either fails, the other probably will too. Then there is the option of a non covalent bonding btk drug or venetoclax with or without obinutuzimab.

I hope they have one or more clinical trials in place that can inform the decision as to when its safe for us to stop a drug and simply restart it, without damaging done, if our cll returns. And I hope Wgsljs starts feeling better. The chest pain doesnt sound Cll related to me, but I lack qualifications to have any meaningful opinion on that.

[Pageboy in reply to cajunjeff]

I too have all those questions about coming off Calquence and so too does my doctor. Will we let the genie out of the bottle and will the Acala (or any other drug) work as well as if we hadn’t come off it once restarted? Would, however, the rest of our body benefit in some way by coming off it for a while? Our immunity, bones, hair, heart etc etc. Questions, questions. The trials didn’t go that far so we are the guinea pigs for those to come. My doctor has said he’d prefer me stay on it for five years before coming off, though I am going to reduce the dose to one pill a day soon (after 4 years). I have also had Obin infusions. Three years is a more general time mark, I believe. Watch this page, as they say.

[Justasheet1 in reply to Pageboy]

Page,

I have been on ibrutinib and then Acalabrutinib for 5 years. I have been mrd- in the blood on a Flow test for 4 of them.

I had fleeting typical issues such as bruising and bleeding in the beginning but nothing else until year four on ibrutinib. I had palpitations which was not afib but was switched to acala and the palpitations disappeared.

I have my appointment with Dr Wierda from MDA in December and intend to ask him about his opinion on a break for me because I am concerned about resistance after 5 years on drug. I would like to extend the useful life of the acala as long as I can possibly using it again or even a better drug coming down the pipeline.

Jeff

[Sushibruno in reply to Justasheet1]

I would really like to know what Dr. Weirda thinks about taking a drug holiday. If I’m not mistaken I think I asked Dr. Lamanna this question and she said no I have to take it till it stops working.

[Justasheet1 in reply to Sushibruno]

Lydia,

Dr Lamana may have only speaking for your case. I have been on a BTKi considerably longer than you so the conversation may differ.

I promise to post his response to me.

Jeff

[Sushibruno in reply to Justasheet1]

My appointment with her is in September. I will be bringing this conversation up again with her because I would absolutely love a holiday from my meds. Say in a couple of years🙂.

[Pageboy in reply to Justasheet1]

Really interested to hear what they say. Thanks, Jeff.

[Vizilo in reply to cajunjeff]

Interesting comments and questions that are very topical in my case. I have been on Acalabrutinib for 3.5 years without a side-effect. All my numbers finally normalized about a year ago. The last one to return to normal was my severe neutropenia.

At my last quarterly check-in with my cll specialist, he mentioned that if my numbers remain in the normal range for another year, he might consider advising a “holiday” from Acalabrutinib (subject to a clear CT scan). He spends most of his time in Cll research so I asked him what prompted this comment. He mentioned that the only reason he initially started me on Acalabrutinib was my chronic neutropenia (0.2-0.5 for years). My other numbers were never that concerning (WBC/ALC never much above 25K). Now that neutrophils have normalized (2.5 range), it might be time to see whether normal levels can be maintained without meds.

[DriedSeaweed in reply to cajunjeff]

Yes I agree. But you could turn the argument around and say by staying on it indefinitely a person is actually selecting for the worse clones. I get the impression every time a bottle neck is created all the easy pickens are killed off.

My question is if we can say Calquence had anything to do with the pain if it continues long after quitting it. Who knows what else could be going on in the poor fellow’s body.

I recall vomiting after starting the venetoclax ramp up. I fell into the psychology of blaming the drug since it is listed as a side effect but it turned out I had bad food poisoning.

I agree that we will be able to rechallenge in most cases. I feel like my 15 month time limited combo of ZV only did part of the job. We will restart them when I meet iwCLL guidelines. I suspect continued pressure would have gotten a deeper remission but when the cells reemerge I’m sure they will be nastier.

I would be interested in a trial that involves a pause if disease looks controlled. A “good enough PR” to stop financial toxicity for a while until a flare.

[CoachVera55]

I know how we love our BTK Inhibitors but they’re well documented to have cardiotoxic tendencies. I had chestpain 13 days on Zanubrutinib which looking back is a big sign of incompatibility. But everyone loved my numbers so I did not object for risk of rocking the boat.

I was in the ER 3X in 3 months with chest pain again a big red flag we all ignored. I had Left Pleural Effusion with Pneumonia vs Aetelectasis. No antibiotics but just steroids were ordered while my health deteriorated. Once it was clear my 4 doctors would not help, I got a 10 day dose of antibiotics & then I improved. But I had ongoing chestpain & could only barely tolerate 1/4 the dose, Zanubrutinib 80mg daily.

I got my CLL Specialist & a new Pulmonologist & Cardiologist. Everyone said I was better after various tests & to increase the dosage. I questioned the Echo that showed dilated Right Atrium & IVC but my original Cardiologist said that my body habitus wasn’t properly calculated. I said I want to believe that but I’d have to ignore my own symptoms & he said that I could believe it or worry about it🤷🏽‍♀️

We increased to 80mg twice daily, 1/2 dose & my numbers were perfect except for Plts 109 the highest but close to my W&W numbers. My Neutrophils would dip down too periodically. I was good for 5 months & then I was in so much generalized pain which aggravated my old injuries & the weight gain didn’t help.

Long story short, 1/2 dose brought back the Aetelectasis but now Pericardial Effusion with Abdominal & Pedal Edema. Classic signs of Congestive Heart Failure. So while so effective I could not tolerate the side effects after 13 months. 13 yrs of W&W, set the tone for everytime 13 being significant. Praying for 13 more years with no treatment. Stopped in May & numbers dipped but rose back up & are holding. I’m waiting for Cardiac Rehab altho they want to argue but CT Scan & Echo show Pericardial Effusion so we are moving forward with that treatment protocol.

My mind didn’t want to believe that I could not tolerate this effective treatment but my body had been telling me from the beginning, I guess I will start listening now😞 #GODSPEED on your complete restoration & your next steps…

[billypeats]

I had a C pain in my chest but it was caused by pleurisy . I too am taking calquence

[CoachVera55 in reply to billypeats]

Yes all the BTKs have those tendencies but Acalabrutinib is the mildest. The medication inserts state clearly to treat infections promptly, properly & even prophylactically. Had I been treated properly I would of did well too, but getting off after 13 mos might be the best thing for me especially providing I get some months off treatment. My CLL Specialist when pressed said I would get a year of a medication break🙌🏾