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CLL Support Association
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Anyone taking calquence (acalabrutinib)?

I had a serious bout of arrhythmia after only a few weeks on imbruvica, even thought I had no previous heart problems. I won't go back on it. My doctor wants me to take calquence (acalabrutinib). However, I am even afraid of that after my experience with imbruvica. I am leaning towards immunotherapy.

Is anyone on calquence? If, is all going okay?

Thanks,

Rich

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Acalabrutinib would be off label... its not FDA approved for CLL, so not much experience with the drug.

You could look at the new duvelisib or venetoclax as well. Even Rituxan and Gazyza immunotherapies have heart risks...

What has your cardiologist advised and has he had a consultation with your hemetologist?

~chris

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I will see the cardiologist next week. My doctor says you can get Acalabrutinib as your second line of treatment even though it is not officially approve. It actually what I wanted based on my research, but he said I could not try it first.

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I'm in the US and started on Acalabrutinib in July (off label). I've had no previous treatments. I wanted to avoid the side effects of Ibrutinib and my doctor supported my request and got my insurance company's approval. Phenemenol results. All markers back to normal within 4 months. Only side affect were headaches for the first couple of weeks. Another member of our CLL support group is on it with no side affects (he started after relapsing from chemo treatment).

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Thanka fo the reply. Have you heard of anyone getting atrial fibrillation on it without previously having it?

Thanks, Rich

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No. However my CLL support group friend is a pilot for Federal Express. If you're on Ibrutinib (or Acalabrutinib) you are not allowed to fly (because of the possibility of Afib. Our CLL specialist is working with him to try to get an FAA exception if on Acalabrutinib. I believe the studies/trials are showing Afib as a possible side affect but a at very low rate (less than 3%).

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Yes, I have seen the same 3 % figure. I have also seen a biological explanation for why calquence should not cause afib (it does not affect the tek pathway).

So, I wonder. Perhaps 3% of all people in this age g get afib. Perhaps the 3% who got afib already had it I have never seen that discussed. They just say afib OCCURRED in 3% of 600. Also, about 9% of people over 65 have afib. I wish I could get better data.

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I have been approved for calquence. I regret letting my doc say they would not approve it first line. Based on all I've read it is in every way better than Imbruvica. I urge anyone first starting any therapy to push their doc to try to get the insurance to pay for calquence.

I am still not sure what I will do next. However, I really regret not starting with calquence.

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Greats news , how long were yuh in watch and wait before treatment.

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I was on w&w for 4.5 years before starting treatment. I'm unmutated with no other deficiencies.

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Do you take one or two pills daily? If two, did you start with one?

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I started with two. One in the morning and another 12 hours later. The results were immediate. WBC jumped from 60k to 189k within 5 days. Topped out at 206k after 3 weeks and then steadily declined until returning to normal (7k) 4 months after starting. Were you able to get approval?

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Thanks for the information. I am starting at one a day because I fear side effects. I notice the people who started at one a day in the study did as well as anyone else. I think they switched to two a day after about 6 months, but I am not sure. Minimally, they stayed on one a day for 28 days.

Best,

Rich

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Rich, I hope it works for you as well as it has for me. What I found surprising was it's impact on what I would consider non CLL related markers. My high Creatinine and PSA both dropped back into the normal range. Please keep me posted on your progress and if I can answer any question about how it worked for me please do not hesitate to ask. Mark

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Thank you. Now that my mention it, my creatinine was going down along with my wbc until I had to stop imbruvica because of a heart rhythm problem.

Rich

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By the way, how soon did you notice lymph nodes and spleen decreasing in size?

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My nodes and spleen were noticeably smaller within a week. In 2 weeks the nodes were back to normal. Mark

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Did you feel weak the first few days? I don't know if my weakness is due to white cells being flushed into my blood, or due to the xanax I am taking for anxiety.

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I had weakness or fatigue (tired) for the first week or so. Had a couple of pretty severe headaches (8 on a scale of 10). Tried tylenol with no impact. The doctor finally told me to take one or two "Excedrin Tension Headache" tablets (doesn't contain aspirin). They worked wonders. I still get an occasional mild headache in the morning but one tablet or a strong cup of coffee makes it go away.

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I don't have headaches. Just feeling weak, weaker than I felt before I started Sunday. You felt weaker than before you started?

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I was struggling with fatigue before I started treatment. The fatigue after treatment was slightly worse but it might have been related to the headaches. I did force myself to go for walks and/or spend time on a treadmill. That seemed to help reduce the fatigue some.

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By the way, my investigations show that calquence does not have the serious bleeding problems of ibrutinib. So, maybe you can take a little aspirin. If you drink (I don't know if you do, but I do) you should not take excedrin.

bloodadvances.org/content/1...

I also force myself to walk.

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I seldom indulge so no worries 😁. Thanks for the info. Is there a CLL support in your area? I've found ours to be a great source of info and support.

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Not as far as I know. I find this group and people like you pretty good support.

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I've found the cll society to be another good source of information and they also sponsor the CLL support groups. (cllsociety.org)

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My regular hemotologist is on vacation and I saw his associate today. He jerked when I said I had been on amitryptiline. He feels it played a role. Please warn people in your group about it.

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Did you have muscle twitching as a side effect?

Rich

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Nope, Just an occasional headache (which I didn't get before I started treatment).

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When did you start feeling a little better? I started Calquence last Sunday, and I still feel tired and a little out of breath (when I walk a block or so).

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The first couple of weeks were rough but after that the fatigue disappeared and I felt normal, like I did before CLL.

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Did you experience any itching? I have been, but I think it is probably due to the beta blocker.

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No side affects other than the headaches when I started the drug.

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Do you recall how soon after starting treatment you quit allobrutinub?

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I don't understand your question (allobrutinub?). Acalabrutinib was my initial treatment and I'll be on it until it quits working and I relapse (hopefully years!). I still take an occasional Excedrin Tension Headache but infrequently (once every week or two) to resolve a minor headache.

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ordinarily with imbruvica or acalabrutinub people take allobrutinin for first x weeks to keep uric acid down and avoid tumor lysis. You did not do that?

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No. I did not find issues with uric acid or tumor lysis in my research on Acalabrunib and it never came up in the discussions with my CLL specialist or the university pharmacist. There was nothing in the literature that came with the acalabrutinib other than I was taking omeprazole (acid refux) at the time and had to quit since you can't take this when taking Acalabrunitib. Everything I've read about tumor lysis applies to those starting Venetoclax (never associated with ibrutinib or acalabrutinib). This would be a good question for another post.

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I guess it is rare with ibrutinib and acalabrutinib because they act so slowly. However, it seems most physicians prescribe it. My did and I am still on it after 3 1/2 weeks. I'd like to quit it.

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I'm surprised. I've been seeing Specialists at Duke and the University of Colorado and this is the first I've heard about about it. I also attend a CLL support group and no one has ever mentioned it except those on Venotoclax.

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Although my WBC is down substantially after 5 weeks (at this rate it will be normal in 3 more weeks), my hemoglobin is stuck at 10.5. My hemotologist says it takes time. Do you recall when your hemoglobin got back to 11 or 12?

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When I started the Acalabrutinib my hemoglobin was at 11.2. It hit 12.0 in 5 weeks and was at 14.2 after three months. After five months it was at 14.8.

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I guess I am following about the same course. Hemoglobin has gone from 9.9 to 10.7 in 5 weeks. Everything seems slower with calquence than with imbruvica. Have you heard calquence moves more slowly?

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Haven't heard that. I'm just glad I'm getting the results I am.

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I am a little concerned about my results. My lymphocytes jumped to 250k, and then went dow nicely to 93k after 5 weeks. However, after 6 weeks they are still at 93k. Did you experience anything like this?

Thanks,

Rich

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Mark, just red your comment on PSA. Could be very important for me. My PSA has elevated from 1 to 3 for the last year. It was under 1 for the last 10 years after TURP. I'm looking for any possible connection between CLL/SLL and PSA. Please share! I'll see urology/oncology doctor next week, but they know nothing about this.

My history: Had Afib for over 10 years with different meds, in 2012 had an open heart surgery and worse Afib. Had ablation in 2014 and was fine. In 05/2018 was diagnosed with SLL. Doctors tried very hard to get me on Acalabrutinib but failed, started Ibrutinib in Sept 2018.

I'm doing fine but had a two-weeks Afib episode, My BP is getting high and headaches. Doctors asked again for Acalabrutinib and got approval in one week, just a few days ago. Not sure yet what's next.

Glad I saw your comments.

Vlad

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I don't do a psa anymore. However, like Makr my creatinine went down on both imbruvica and calquence. It was 1.31 a few months ago. Last Monday it was 1.01. I wonder if the CLL artificially raises these numbers.

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By the way, I would try to get calquence now. I was able to get if after having problems with imbruvica.

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Thanks. I already got approval letter. I'll see doctor on Feb 8th.

Any suggestion how to find more about PSA and CLL?

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My PSA dropped from 2.11 to 1.64 after starting Acalabrutinib. My CLL specialist and urologist had no explanation and they weren't aware of any connection between the drug and PSA levels.

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I suspect that the large amount of tumor cells distorts other blood readings.

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I am a little concerned about my results. My lymphocytes jumped to 250k, and then went down nicely to 93k after 5 weeks. However, after 6 weeks they are still at 93k. Did you experience anything like this?

Thanks,

Rich

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Rich,

My WBC didn't make a drastic drop until approximately week 12. Shown below are my labs which show the progression. I did not have blood draws for missing weeks. Hope this helps. Mark

Pretreatment - 62

Week 1 after beginning - 190

week 2 - 203

week 3 - 189

week 4 - 206

week 6 - 153

week 8 - 146

week 12 - 29

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That helps a lot. I notice you had essentially no drop from week 6 to week 8, which is similar to my no drop from week 5 to week 6.

Also, I am only taking one a day because of my fear of side effects. I will talk to my hemotologist about going to 2 a day.

Thanks so much,

Rich

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I am in a National CLL trial so I get checked every 3 months. I was first treated via infusion with Ofatumumab and Fludarabine starting in 2012 which ended in 2014. Lymphs started climbing again in late 2015 and I started with ACP-196 aka calquence or acalabrutinib in June of 2016.

I have been taking it ever since with no real side effects or other issues except some mild headaches the first few months. I really can't say enough good things about the current treatment since it has maintained my white cell count with no issues and no side effects.

There is no more to say. I take 2 capsules every morning and go in for my quarterly checkups and then go back to normal life. For me there were no problems or distress. My headaches were minor and not a bother.

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You take 200mg once a day? I do that also to avoid side effects (100 mg). However, I thought you were supposed to one capsule every 12 hours. Is this part of the trial, namely to see if once a day works just as well?

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I take two (2) 100mg capsules of ACP-196 (they are not using any trade names yet) every morning at 8:00am and have been doing this for over 2 years. No mentionable side effects and my leukemia team is very happy with the results: WBC is between 6 and 9 K/uL as tested/ measured every 3 months.

I believe I am in more of a dosing trial now as some others are/were taking different doses at different times a day. The team is very insistent that I take the dose at the same time every day. The ACP-196 had already been proven to treat CLL effectively, now I believe they are studying the best way to administer it.

When I started the IV treatment in mid 2012, my WBC was as high as 120 K/uL and went down as low as 3 K/uL within a few months . My WBC rose to 83 K/uL in mid 2016, and this was the next "New" solution. In 3 months, I was back down below 10 K/uL and have been in the range of 6 to 10 K/ul since then.

The trial has been providing us with Acyclovir and Bactrim as they noticed a slight uptick in shingles and minor infection cases (might not have anything to do with the ACP-196 treatments).

Hope this helps.

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Thanks for the information. Do you know if anyone in your trial is taking 100 mg once a day?

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No, There are patients from around 3 different trials when I go and they don't encourage sharing details among ourselves - they fear it might taint the results.

I will ask when I go to my next screening in March and let you know what they say.

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Did you experience any itching? I have been, but I think it is probably due to the beta blocker.

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Do you recall whether there were any periods during which your wbc did not drop in the 3 months that you went from 120 to 10? I made great progress in lowering the wbc during my first 4 weeks, but little has changed during the last 3 weeks. I have completed 7 weeks now. uihwki (Mark) seems to have also experienced these dry spells.

Thanks,

Rich

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I started ACP on July of 2016 and the WBC went down steadily for 10 months before stabilizing at around 1.50 +/-0.5

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How frequently did you have blood tests? If monthly, you might have missed a two week stagnant period.

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I have been on a 3 month test cycle for a long time. I visit NIH every 3 months and they do a bunch of tests while I am there. I have had other tests sometimes for other reasons (I just had a prostatectomy), so I have also entered those results in my spreadsheet. Weekly seems to be a bit over the top. My results have been very steady and stable.

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Yes, my doc does them about weekly, and the wbc has not gone down in the last two tests. It went down a lot in the first 4 weeks. I don't know whether this is a matter of concern or not. If you only have them every 3 months, you would not see something like this. I think my doc is stressing my out by doing them too frequently.

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I agree it is too frequent, but NIH have been testing this for a long time, so they have a decent "grip" on the overall expectations. I would just suggest you chart the results and look at them monthly or even further apart than that. My wife actually enters data into the spreadsheet while I am still out of town... They post my test results around 3 hours after the blood draw, so I am "told" the current values and comparisons are sometimes made, but other than that, if they aren't worried, I don't feel qualified to worry. I have several other medical issues that my team is also aware of and they try to put everything into perspective for me so I don't start worrying without real cause. I do get CAT scans every 6 months, so they are looking at a lot of things beside blood counts. DNA is also being compared. (no information on those analyses as of yet, but it is good to know they are looking at every thing they can to find a cause as well as a treatment).

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I took Imbruvica for 10 weeks in 2016 and had a serious AE. I coughed up a mouthful of blood which turned out to be a PE. This may or may not have been related to Imbruvica. My cardiologist started me on a blood thinner.

My docs didn’t want to rechallenge to find out. My response was phenomenal and didn’t require treatment for a while.

I started Calquence in 2018 and have a few aches pains and “digestive issues”. I have an Oncologist, cardiologist, infectious disease, gastroenterologist, and a Primary care doc all following me together my labs are very boring and over all the side effects are manageable and no heart rhythm or other issues. I feel way better than I did on Imbruvica.

Regards

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Does anyone know if Acalabrutinib causes high blood pressure over time like Ibrutinib?

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I don't know. I have not had any bp problem. I do know it is not supposed to affect platelets and bleeding.

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If you google Acalabrutinib side effects you'll get a list of the side effects that have been associated with Acalabrutinib. I did not see high blood pressure listed. I've been on it for 6 plus months with the only side effect being headaches at the beginning.

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I have not had any blood pressure issues in the 2.5 years I have been taking ACP-196.

I have been on blood thinners (Eliquis) the whole time as I have had blood clots in my left leg on and off for years. Maybe that has helped my pressures stay stable.

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