Anyone taking 100 mg of acalabrutinib?

[profrich]

I switched from acalabrutinib to venetoclax. Now I plan to take both. I want to only take 100 mg of acalabrutinib to minimize side effects. Is anyone doing well on that dosage?

[PlanetaryKim]

Just curious... What is the standard dosage of acalabrutinib?

[profrich in reply to PlanetaryKim]

100 mg twice daily. It has a short half-life.

[PlanetaryKim in reply to profrich]

interesting... unlike it's predecessor ibrutinib, which only needs dosing once daily. good luck!

[Jm954 Administrator]

Are you doing this in consultation with your Dr? Sounds like you might be skiing off piste here if it’s not.

Jackie

[profrich in reply to Jm954]

Of course I am consulting with my doc. I also email with doctors/researchers at other sites. However, no one has the answer for what is best with these new meds. We need to keep side effects manageable while maximizing control. So finding out how others have done on 100 mg is of great value.

I do know that those who started on 100 mg in the big study done by Bird et al. did well, but BIrd told me they were put on 200 mg I think after about 6 months.

[schmitthj007]

The initial dose tested was 200 mg once daily as part of one arm of a trial as well as 100 mg twice daily. The best blockade is achieved with twice daily dosing . Please ask you specialist who is treating you. I would be very worried about resistance developing with a lower dose. I am on 100 mg twice daily and do not experience significant side effect except easy bruising. Also taking venetoclax.

[profrich in reply to schmitthj007]

How much venetoclax do you take (I am taking both also). Did you have rituximab?

Thanks,

Rich

[schmitthj007 in reply to profrich]

I am on 400 mg daily and had 6 cycles of obinutuzemab as well within a trial. Neutrophils are low around 1.2 K without neulasta. So far so good

[profrich in reply to schmitthj007]

What is your ALC?

[Fulart]

I'm new to this site, and this will be my first post. I was diagnosed with CLL/SLL in Feb 2014. Currently I'm on acalabrutinib (Calquence) 2x daily, 100mg each time. I've been on it 1 1/2 weeks. The only side effects I'm having are headaches, which I combat well with Excedrin Tension Headache with Caffeine. I had to fight long and hard to get acalabrutinib, overcoming an insurance denial, just so I could go with this 2nd generation BTK inhibitor and avoid ibrutinib's frequent severe side effects. Acalabrutinib is designed to lessen side effects. Each of us will react differently of course, but I'm going with the full dose to increase my chances of a successful treatment.

My first treatment was in April 2015 with bendamustine and rituximab, and I went into remission for 2 years. I see in your past postings, Profrich, that you were on this treatment not long ago. Apparently it did not work well for you, and I'm sorry. I hope you'll find acalabrutinib easy to take with few side effects!

[profrich in reply to Fulart]

How many rounds of BR did you do? BR actually worked for me (2 rounds). I am not moving on to targeted therapy.

[ReneeSusan in reply to Fulart]

I just started Acalabrutinib, first full day today. How are you feeling now. Any more dude effects? Are they manageable,

Best wishes

Renee

[Fulart in reply to ReneeSusan]

The first 2 months I felt like I had a cold. My hematologist prescribed amoxy clav, even though a cold is a virus which is not corrected by antibiotics. I believe he was doing his best to protect me against any opportunistic infections. The med did help me feel better by clearing up my sinuses. Knocking on wood, I'm now (3 months on acala) not suffering from clogged head issues. I still get headaches, but not as frequently. 2 weeks ago I had a super bad toothache and was referred to an endodontist. Neither my dentist nor endodontist could find anything wrong! Now I'm wondering if it was a headache that "traveled." It's gone now. My breathing has really improved, and my outlook on life has really improved! I really can't find anything bad to say about this med, but I'm only 3 months in.

[Davemich]

Hi, I am currently on 100 mg of Acalibruitnib. I started February of this year, and my latest CT scan which was done the end of May has shown reduction in nodes so my doc is happy with that and I will continue on the lower dose. I was on Ibruitnib in 2016 - started out on full dose but side effects were intolerable so I was dose reduced to one. Just one Ibruitnib did wonders - all of my enlarged nodes were gone, but unfortunately side effects had me hospitalized numerous times so I had to stop taking. I am not the typical CLL patient, I also have Crohn’s and short bowel so drugs affect me differently. I’m hoping one dose of Acalibruitnib continues to work for me and I do not develop a resistance. Only side effects I am experiencing are swollen and painful joints and ankle swelling and mild diarrhea.

Best of luck to you!

[profrich in reply to Davemich]

Maybe you should consider adding venetoclax.

[profrich in reply to Davemich]

Did you have cardiac side effects on ibrutinib?

[Davemich]

No, I did not have any cardiac side effects. I experienced severe, life threatening diarrhea and was hospitalized numerous times and also became septic. I would love to add venetoclax but one of the major side effects is diarrhea so I am very scared of that. I already have a comprised GI system with the Crohn’s disease and short bowel so unfortunately I am stuck and may be quite limited in my treatment options. I am hoping Zanubrutinib will be available soon so it offers another option

[profrich in reply to Davemich]

My situation is complicated. I won't go into details. However, I have been on venetoclax and am now going back on it, along with acalabrutinib. I think I had very mild diarrhea at first, but later seemed to more have constipation. However, I think the studies show more people have diarrhea than constipation. There is no telling what affect it would have on you.

Some people only take 100 mg of venetoclax daily with good results. It is something to keep on the back burner at least.

What is zanabrutinib?

Best wishes,

Rich

[Davemich]

Yes, a reduced dose of venetoclax, if/when it comes to that is also another option. Zanubrutinib is the next gen of Acalibruitnib

[profrich in reply to Davemich]

Does zanabruitinib reduce cardiac side effects? I had PVCs on acalabrutinib.

[Davemich]

Not sure...one study I read was that the percentage of cardiac events were 1%...but I guess we will need to wait and see what the rest of the studies show

[profrich in reply to Davemich]

I sent a note to my doc to see what he knows. Like I said, had PVCs (palpitations) on acalabrutinib, but still hesitantly plan to go back on it. I am wondering if there has been any comparison of acalabrutinib and zanabrutinib as far as cardiac side effects. From what I can tell on-line there does not seem to be that much difference between the two (as far as the heart). They both do not inhibit TEC like ibrutinib.

[Smakwater]

Profrich,

Excuse my being off topic.

It is my understanding that acalabrutinib and zanabrutinib are only available through research participation. How are you accessing acalabrutinib?

JM

[profrich in reply to Smakwater]

That is not the case for acalabrutinib. It is not approved for first-line. I got it after imbruvica had bad side effects. However, one person in the forum got it as first-line by making a case to the insurance company.

[Smakwater in reply to profrich]

I just read a post where a patient of Dr. Byrd stated that it has been approved. I am awaiting clarification.

Hope it is so.

[Smakwater in reply to profrich]

Just received that clarification. It has been sent in for approval, and is expected in 3-4 months.

[profrich in reply to Smakwater]

You might be able to get it without approval. Just ask your doctor to put in a prescription. They will probably reject it, but might overturn it if you can offer good reasons why ibrutinib would be bad for you.

[Smakwater in reply to profrich]

I am on venetoclax right now. Just looking ahead in case of relapse. Looks like acalabrutinib or zanabrutinib are possibilities. I believe acala has 2nd line approval.

[profrich in reply to Smakwater]

How much venetoclax do you take? I have been on both venetoclax and acalabrutinib, and am restarting them together.

[Smakwater in reply to profrich]

400 mg daily for 12 months. I am on month eight.

[profrich in reply to Smakwater]

Did you have rituximab also? What is your ALC?

[Smakwater in reply to profrich]

I had 6 months of obinutuzumab (Gazyva), (10 infusions) started October 2018.

I started the venetoclax with the Gazyva at month 4 (January 2019). There was a ramp up from 20mg to 400mg daily over a 6 week period.

I have been off of the Gazyva since May.

June 6th lymphocyte count was .77 with a lymphocyte percent of 30.4, so ALC is now about 234. My neutrophil count is around 1.3. everything els is in range.

My peripheral blood actually went to normal after 3 Gazyva infusions. It was astounding, and my fatigue was gone.

[profrich in reply to Smakwater]

I am not sure you are interpreting those numbers correctly. It seems your ALC was .77, and the lymphocytes were 30.4% of all your white blood cells. Or perhaps I am not following what you are saying.

[Smakwater in reply to profrich]

You are correct., I calculated twice. oops

[Davemich in reply to Smakwater]

I was able to get Acalibruitnib off label...my doctor had to fight with my insurance but after proving my case, it was approved so it can be done.....hopefully FDA approval for CLL will be very soon

[profrich in reply to Davemich]

I strongly recommend fighting. If I had done that instead of starting with imbruvica, my whole situation the past half year might be different. As far as I can tell, there is no reason to use imbruvica on anyone at this point.

[Smakwater in reply to Davemich]

Good to hear it.

[NoClew]

Reduced my dose of Acalabrutinib (monotherapy) from 100mg 2x day to 100mg 1x after 18 mos due to to bone and muscle pain. I have continued to do well, blood work holding in normal range. Reaching 3 year anniversary full work up testing in 3 weeks. So far i am glad I took the reduced dosage. All the best to you.

[profrich in reply to NoClew]

Thanks much for the answer. Other answers did not really answer the question. What is your ALC on most recent test?

[NoClew in reply to profrich]

My ALC has been running below the normal range at .52 (normal 1.18 - 3.74). My team does not seem concerned as my ANC is good at 2.37. HGB 13. 5, Platelets hover at the low end of normal. I would be considered CR, but for 1 stubborn lymph node just above acceptable size. No MRD in sight, but not bad for unmutated, p53 deleted, 13q.