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
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
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).
Thanka fo the reply. Have you heard of anyone getting atrial fibrillation on it without previously having it?
Thanks, Rich
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%).
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.
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.
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
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.
Greats news , how long were yuh in watch and wait before treatment.
Do you take one or two pills daily? If two, did you start with one?
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?
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
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
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
By the way, how soon did you notice lymph nodes and spleen decreasing in size?
My nodes and spleen were noticeably smaller within a week. In 2 weeks the nodes were back to normal. Mark
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.
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.
I don't have headaches. Just feeling weak, weaker than I felt before I started Sunday. You felt weaker than before you started?
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.
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.
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.
Not as far as I know. I find this group and people like you pretty good support.
I've found the cll society to be another good source of information and they also sponsor the CLL support groups. (cllsociety.org)
Did you have muscle twitching as a side effect?
Rich
Nope, Just an occasional headache (which I didn't get before I started treatment).
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).
The first couple of weeks were rough but after that the fatigue disappeared and I felt normal, like I did before CLL.
Did you experience any itching? I have been, but I think it is probably due to the beta blocker.
No side affects other than the headaches when I started the drug.
Do you recall how soon after starting treatment you quit allobrutinub?
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.
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?
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.
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.
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.
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?
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.
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?
Haven't heard that. I'm just glad I'm getting the results I am.
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
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.
By the way, I would try to get calquence now. I was able to get if after having problems with imbruvica.
Thanks. I already got approval letter. I'll see doctor on Feb 8th.
Any suggestion how to find more about PSA and CLL?
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.
I suspect that the large amount of tumor cells distorts other blood readings.
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
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
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
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
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
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?
RU going to get a supplement to Medicare?
Jeff
yes but even with supplement and part D very costly. Do you have commercial insurance like me at this time?
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
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
I thought as much - I did post. Hoping for some good information.
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.
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
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.
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?
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.
Thanks for the information. Do you know if anyone in your trial is taking 100 mg once a day?
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.
Did you experience any itching? I have been, but I think it is probably due to the beta blocker.
Did you ever find out if anyone in the trial is taking 100 mg daily?
No, I believe we are ALL taking 2 x 100 mg per day in one dose
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?
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
I started ACP on July of 2016 and the WBC went down steadily for 10 months before stabilizing at around 1.50 +/-0.5
How frequently did you have blood tests? If monthly, you might have missed a two week stagnant period.
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.
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.
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).
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
Does anyone know if Acalabrutinib causes high blood pressure over time like Ibrutinib?
I don't know. I have not had any bp problem. I do know it is not supposed to affect platelets and bleeding.
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.
i had the same problem when first on ibrutinib i stopt drinking coffee heart went back to normall still on ibrutini 5 mounths
I just started taking Caquence 2 weeks ago. I got so sick taking 2 pills aday so I backed off to one a day. My migraines are gone and my nausea with vomiting has stopped. Now I am extremely fatigued which I can live with since I have been tired for months. I have CLL and Waldenstrom. My IGM’s are 2014 right now. Hoping my treatment reduces these numbers also. The thick blood contributes to me being tired too
Good morning. My wife was hospitalized after 18 days on imbruvica. Internal bleeding, hematoma, body swelling. Needed multiple transfusions. Started Calquence after about three weeks. Has been on it about three weeks now. Initially had a severe rash but prednisone helped clear it up. Diarrhea for a week, pretty severe but that has moderated. Only side effects now are swollen feet and bone pain in neck back and shoulders. Primarily at night.
Have not seen numbers go in the right direction yet. Last wbc was over 200 but doctors say that is expected. Much better tolerance than on imbruvica.
Hey all, just started Calq and was wondering about the grapefruit, which I was not a fan of anyway but seville oranges or bitter fruits or acidic. What about regular oranges/orange juice or Lemons/lemonade? any thoughts? Thanks...
You are not supposed to eat grapefruit while on Acalabrutinib. Apparently the fruit cancels out the effects of the drug. You can double check with Biologics but I am pretty certain that is the case.
This post covers drug interactions with ibrutinib:
healthunlocked.com/cllsuppo...
Grapefruit and Seville oranges strongly inhibit CYP34A, the liver enzyme involved in clearing ibrutinib from our bodies. Consuming these fruits or products made with them (juices, marmalade, etc) can actually increase the length of exposure of our body to ibrutinib, worsening the side effect profile.
Neil
I am on Alacabrutinib and eat navel oranges. I also have a lemon almost every day.
Seville oranges and grapefruit play havoc with many medications.
HI... I am a cll patient who also started with the 420mg pill. After about 8 months my cancer was almost gone but the imbruvica should have been changed to a lower dose. My oncologist was out of the country so i was unable to reduce the amount. I then got a heavy anemia and my local dr said stop taking it. I took a month off then my new oncologist chose to put me on calquence ...100 mg... one in the am and one in the pm. After almost 2 months I am doing well with few side effects , blood is ok and lymph nodes shrinking . Hans
I have been taking Calquence since January and the only side effects I've had are extremely dry skin, which has improved since I started it, bruising and runny nose. I do seem more tired than I was but still do my own yard work and get out to go walking sometimes. I'm also still working full time but get to work from home and do take small naps almost every day. I wouldn't take ibrutinib because of heart issues so this was my alternative. My WBC has dropped dramatically so even though they wanted me to start infusions I have opted not to because this is working well.
I did have extreme nausea the one time I was out for almost two weeks (snow storm in Texas stopped shipping). It was horrible and if that happens again I probably won't restart.
Hope this helps.
I was talking to a Rep from Biologics the other day who told me they are going to build a factory in Texas. It would certainly help when stuff like that happened.
I have had fantastic luck with this drug. My white wbd c was about 350000.and 2 months later it is 139.not one side effect.
No problems of af with me on Calquence. I believe incidence is low compared to other drugs
Coming off of Calquence. 
Restarting Calquence
Calquence First Week
Long, but much needed post about calquence vs venetoclax
