Anyone taking calquence (acalabrutinib)? - CLL Support

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Anyone taking calquence (acalabrutinib)?

profrich
profrich
90 Replies

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

90 Replies
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Cllcanada
CllcanadaTop Poster CURE Hero

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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profrich
profrich
in reply to Cllcanada

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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uihwki

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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profrich
profrich
in reply to uihwki

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

Thanks, Rich

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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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profrich
profrich
in reply to profrich

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.

1 like
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rose8
rose8
in reply to uihwki

I was wondering how your friend made out with getting his pilot's license back. My husband lost his private license when he was diagnosed with CLL and will now be on calquence. Any information would be helpful thanks

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uihwki
uihwki
in reply to rose8

While acalabrutinib has been approved by the FDA the FAA will need to review the information and determine if they will accept the drug and allow my friend to fly commercially. I'll get an update from him at our January CCL Support Group meeting. Drop me a reminder at the end of January and I'll let you know his status.

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rose8
rose8
in reply to uihwki

Thank you for your response. My husband is feeling great and being unable to fly is devastating to him. Although he has a private pilot license the FAA seems have same restrictions as commercial. I appreciate any information.

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Canuck901
Canuck901
in reply to uihwki

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

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uihwki
uihwki
in reply to Canuck901

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

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profrich
profrich
in reply to uihwki

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

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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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profrich
profrich
in reply to uihwki

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

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uihwki
uihwki
in reply to profrich

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

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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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

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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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profrich
profrich
in reply to uihwki

Did you have muscle twitching as a side effect?

Rich

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uihwki
uihwki
in reply to profrich

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

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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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

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uihwki
uihwki
in reply to profrich

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

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profrich
profrich
in reply to uihwki

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

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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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

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profrich
profrich
in reply to uihwki

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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cllady01
cllady01Volunteer
in reply to profrich

I know this is an old post, but just in case people read this and want to know about "allobrutinin" which profrich speaks of, he must have meant Allopurinol for the acid build up.

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VLAD11
VLAD11
in reply to uihwki

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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profrich
profrich
in reply to VLAD11

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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profrich
profrich
in reply to VLAD11

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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VLAD11
VLAD11
in reply to profrich

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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uihwki
uihwki
in reply to VLAD11

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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profrich
profrich
in reply to uihwki

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

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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

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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profrich
profrich
in reply to uihwki

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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uihwki
uihwki
in reply to profrich

Rich,

Just checking in to see how you're progressing. Hopefully your markers are approaching normal or continuing to move in that direction.

Mark

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MonD
MonD
in reply to uihwki

Hi Ruch. Not sure if you are still active as this is older post. I started acalabrutinib one per day and wonder how long it took for your creatine to fall. Also what do you do when you miss a dose. Just skip it as says in instructions?? Thx

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uihwki
uihwki
in reply to MonD

MonD, My creatinine dropped back into the normal range within 60 days from starting acalabrutinib (I'm on two tablets per day). In 18 months I've never missed a dose. At the beginning I put alarms on my cell phone to remind me every 12 hours. In your case I would follow the directions (just skip it) but put a system in place to remind you so it doesn't happen again. Mark

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ReneeSusan
ReneeSusan
in reply to uihwki

Dear uihwki - I am considering acala and doctor got approval from my insurance company but concerned because I am going to retire in 8 months and won't be able to afford the drug on Medicare. Do you know if AstraZeneca has a financial program for patients on Medicare?

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Justasheet1

RU going to get a supplement to Medicare?

Jeff

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ReneeSusan

yes but even with supplement and part D very costly. Do you have commercial insurance like me at this time?

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Justasheet1

Yep. I retired early and won’t be Medicare eligible for 7 more years.

I’m paying my own freight through the city I retired from. $$$$$ but it covers all the meds.

Have you considered a clinical trial to offset the costs of the drugs?

Jeff

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uihwki
uihwki
in reply to ReneeSusan

Renee, I don't believe they do but you could have your pharmacy check with them. I believe there are some income based assistance programs available through the CLL Society or the LLS Society. If you can't find anything online a posting on this forum asking the question might get you some info. Good luck. Mark

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ReneeSusan
ReneeSusan
in reply to uihwki

I thought as much - I did post. Hoping for some good information.

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uihwki
uihwki
in reply to ReneeSusan

I'll be curious what you find out. Like you I'm 8 months from Medicare. I'll be covered by a retiree medical plan provided by my employee (unless they cancel it which could happen). My max out of pocket for drugs will be $4.5k. Not great but I'll be able to manage it.

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GL64
GL64
in reply to uihwki

Question ...what was the location of the headaches with calquence? My wife is on her first week and is having waves of headache in the frontal portion of the brain..is that similiar to yours?

Thanks

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uihwki
uihwki
in reply to GL64

Same location. Was terrible until my specialist told me to take the Excedrin Tension Headache. Instant relief from severe to mild headaches. Ultimately they disappeared completely within a couple of werks.

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Trial2

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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profrich
profrich
in reply to Trial2

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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Trial2
Trial2
in reply to profrich

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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profrich
profrich
in reply to Trial2

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

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Trial2
Trial2
in reply to profrich

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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profrich
profrich
in reply to Trial2

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

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Trial2
Trial2
in reply to profrich

I never had itching and it has never been a question during my visits.

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profrich
profrich
in reply to Trial2

Did you ever find out if anyone in the trial is taking 100 mg daily?

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Trial2
Trial2
in reply to profrich

No, I believe we are ALL taking 2 x 100 mg per day in one dose

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profrich
profrich
in reply to Trial2

I took 100 mg acalabrutinib daily for 8 weeks. It worked for the CLL, but I had PVCs (heart palpitations) on it. Not a lot, but enough to unnerve me. So, I never bumped to 200 mg. I probably will go back on it with venetoclax, and think I may still take only 100 mg.

Do you ever get PVCs?

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profrich
profrich
in reply to Trial2

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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Trial2
Trial2
in reply to profrich

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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profrich
profrich
in reply to Trial2

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

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Trial2
Trial2
in reply to profrich

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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profrich
profrich
in reply to Trial2

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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Trial2
Trial2
in reply to profrich

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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Drum-guy

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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Yuck

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

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profrich
profrich
in reply to Yuck

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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uihwki
uihwki
in reply to Yuck

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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Trial2
Trial2
in reply to Yuck

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.

1 like
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bali103

i had the same problem when first on ibrutinib i stopt drinking coffee heart went back to normall still on ibrutini 5 mounths

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