Treatment starting soon and given option on 2 drugs Ibrutinib and Acalabrutinib by my hematologist, if one had to choose for first frontline treatment which should it be?
Ibrutnib vs Acalabrutinib : Treatment starting... - CLL Support
I have been on Ibutinib for a long time. For me it is effective and without adverse side effects--but I manage at less than normal doses because of the other things in my protocol. So I will not switch.
But given what I knew about Ibutinib when I started it and what we know about Alacabrutinib now at its still early stage in clinical use, if I now were making your decision I would go with Alacabrutinib. And by the way, I own some AbbieVie stock so I have a financial interest in Ibrutinib.
I've been on imbruvica/ibrutinib for 2 years. After about 6 months I developed lymphodema in my left leg. That was my only side effect other than brittle nails and dry skin. I had posted here and no one seemed to feel it was caused by the medication. What is being done for you? I had some therapy and was told to wear support stockings but my foot, ankle and lower leg are still swollen
I have the same issue as well. I was told to keep my skin moisturized, my nails clipped low. My primary doctor sent me to a neurologist who did 2 more CT scan which all were negative. So he walk slower nowordered a pump machine to use at home( 3 times a day at one hour each time. Also I had to get special compression stockings which the PT measured and ordered. I have to admit, I can now walk without a walker. I do feel better in my legs, but I still get little red itchy spots on my legs and arms. I hope this helps
Thanks for the reply Basically my results are the same. CT showed no blockage Measured for support stockings received the pump to use only at night, lessons on massage. The swelling has reduced from full leg to only calf ankle and foot. I still have the red blotches. My doctor recommended another neurologist who I will be seeing next month just to double check the prognosis. Fortunately my problem was not as severe as yours. I was able to walk without aids other than stockings. Stay well and hopefully your condition will continue to improve.
I am in ibrutinib and overall am happy with it. It has raised my blood pressure though and I worry about long term cardiovascular effects.
I agree with Neil. It’s a toss up, more data on ibrutinib, possibly less side effects with acalabrutinib.
I would pick acalabrutinib if I had the choice. I think there is enough data to show it will probably be as effective as ibrutinib. I wouldn’t argue with anyone who picked ibrutinib.
So I do recall some one from Canada considering changing from ibrutinib to acalabrutinib but was concerned because if the switched and there were issues with acalabrutinib where they would want to switch back, then ibrutinib would no longer be covered and would have to be paid for out of pocket.
I’m sorry I don’t recall the OP or other specifics at this time. And I know it’s not exactly your situation. But something you may want to ask more about ...
Best to you 💕
I just tried Calquence last month. It is over $16,000 a month compared to a price of just over $12,000 for Imbruvica. I still got fib and now I am getting high blood pressure so switching back to Imbruvica as it did not solve my afib issue and causing other things like headaches at night, angina at times. So for the price difference I have decided to switch back as my numbers were all back to normal in 9 months on Imbruvica. Doing the 280 mg dose of Imbruvica due to side effects but more manageable at that dose. Hope that helps you to make up your minds.
Started on Acalabrutinub because I didn't want to risk the side affects of Ibrutunib.. no regrets. My CLL specialist supported my decision/request. Been on it for 18 months with phenomenal results. The only side affect were headaches for the first 2 weeks. Addressed those with Exdedrin Tension Headache (which doesn't contain aspirin). Cost is basically the same as Ibrutinib.
I'm in the US on commercial insurance. Prescription filled through university hospital. Ibrutinib was 10 per month. Whatever the insurance company didn't pay for the Acalabrutinib the manufacturer did - so I paid nothing. Just started medicare. Will now pay 700 per month -- ibrutnib was the same. Doesn't make sense to me!!!
I have been on ibrutinib for 4 months. Before I started, my hemoglobin was down to 4.8 (very fatigued) and I needed blood transfusions of 2 units every 10 days and an occasional platelet transfusion. Now my blood work is in the normal range. Only side effects I have experienced are high blood pressure (easily controlled with hypertension drugs which I was already on, just increased dosage) and loose stools (not diarrhea).
You really won't go wrong with either choice. As to which I would choose were it me, I would start with ibrutinib and save the acalabrutinib for the future if I develop ibrutinib resistence or do not tolerate ibrutinib well. Like to have that in reserve. Just my $0.02
I was on IB for 6 months and had a blistering rash that came and went roughly every three weeks. A miserable time. Reducing the dosage did not help. Skin rashes on IB are fairly common but this kind of blistering is not.
I've been on Acalabrutinib for a little more than a year and it's been great. I had a mild headache for three weeks (as uihwki mentioned) but Tylenol (acetaminophen) took care of that.
Acala works more slowly than IB but that's not really a problem.
To answer someone else's question, last I heard IB was about $11k a month (which apparently just went up to $11.7k) while Acala is around $14k / month. However as long as you're under insurance or Medicare (and under a reasonable income limit) your doctor should contact Diplomat pharmacy regarding funding grants to pick up the copays.
If you're desperate to get your ALC down due to night sweats or fatigue I might choose IB. Otherwise I would think Acala would be the choice due to the lower chance of side effects.
The standard regimen is a small 100mg capsule 2x per day.
I know it works more slowly because I plotted my ALC levels quite often for both.
On IB my ALC dropped 400 pts in 4 months.
On Acala my ALC has only dropped 330 pts in 12 months.
So for me it's 3 or 4 times slower.
I haven't read anywhere why Acala lowers ALC more slowly. In fact I don't think I've actually read about the speed difference in any published report.
I agree anyone's experience is going to be a single case that may not apply to everyone.
I'll post the chart in a separate post since I can't post it in a reply.
On IB my ALC had gone down from 680 to 175 but the long period off of IB before starting Acalabrutinib allowed ALC to climb back up to 468.
Comparing the parts of the ALC chart between 468 and 175 for IB and Acala, IB took 3 months, Acala took 9 months.
I was on Ibrutinib for approximately 20 months. Developed atrial fibrillation after 8 months. Seen by a cardiologist and put on eliquis. Around a year and two months was having severe leg and joint pain. Dosage was reduced from 420 to 280. I went to a CLL specialist when I was on about 19th month of Ibrutinib and he changed me to Acalabrutnib. I have been on Acalabrutnib for 9 months. Leg and joint pain is minimal now and doing well. For me I am doing better with Acalabrutnib. Three month blood tests have been all good and feeling good.
Acalabrutinib worked better for me. You have to take twice a day instead of once a day, but you can take with food or without. I may never have gotten AFIB like I did with Ibrutinib, but will never know? I did not have any symptoms and still do not have any. AFIB was found on routine EKG with primary doctor. I see cardiologist every six months .
My husband was on Imbruvica for 8 months but had to quit it due to AFIB. It wasn't really working for him. So after watch and wait for several months he was put on Calaquence then started Rituxan infusions in October 2019. At this point they both have worked and his blood appears normal. So many options and everyone is different but we read Calaquence has less heart side effects.
If I was to pick one I’d take Acalabrutnib, both are very good drugs but acalabrutnib is more targeted , it still has the afib risk maybe slightly less , but the biggest difference is the skin and joint pain side effects are not as common as people on Ibruntnib.
Again both are very good drugs. There is also a zanubrutnib coming along which is supposedly even better than both Ibruntnib and acalabrutnib, time well tell
You wouldn’t be making a bad choice with either drug.
Depends on your age and health
I've been on Imbruvica since it was 1st approved 4/1/2014. I'm down to 1 140mg pill/day now since my WBC's are 8-9k vs 249k & a spleen that was at 24cm's. I had very very strong side effects initially, but once those passed, it has only been scarring due to small cuts.
If I did not have information from the many trial patients back in 4/1/2014 which gave me a heads up to the side effect ... .what they were, or might be, and how they would pass, i would have been off the Ibrutinib. My Holiday call in to my Onco resulted in standby Onco telling me to stop the medication at about day 12 when the side effects went way bad, but i ignored him and i cut back on dose to 2 140mg pills/day, and toughed out the side effects.
I was again hit with really bad ulcers in my mouth next, and that was no walk in the park, but I live with really bad spine pain, so it is all relative. Migratory joint pain was pretty radical also, but it eventually subsided. The 1st side effect was completely off the charts rash, but it was only cosmetic, so that was not big deal. My friends said I was wayyyy past what a speckled trout looks like, and I have pics to back that up. My Dr said he had never seen that amount of rash on anyone. Same for my Dr friend who had been on trial meds for 4 years.
Surprised they didn’t at least mention venetoclax plus obinituzimab at least as an option to consider tho they may of course have very good reasons. Also a clinical trial is always worth considering too. Is your doc a CLL specialist? If not then it might be good to get a second opinion too.
And even FCR is still used first line depending on markers sometimes.
I see you are in Canada which might explain why you were not suggested for venetoclax. I somehow assumed you were USA as you were being offered acalabrutinib and it’s not available in many places yet.
I’d echo others that acalabrutinib seems like it maybe be more selective and perhaps stronger than ibrutinib.
Lots of good advice; just realize that much of it is personal experience. That's not bad, it just shows how different CLL is in each of us.
I've taken both. Imbruvica worked super for me, with moderate, but controllable, side-effects for several months. It undoubtedly is a great drug for CLL. However, I was one of the approximately 15% who developed Afib, so after some severe complications, I was switched to Calquence. Now, I'm approaching 1 year on it, and have found it to also be effective FOR ME against CLL. A bit slower-acting in reducing WBC, etc., but definitely fewer side-effects.
As Cajun Jeff explained so well the other day, our chromosomes make CLL very different for each of us, so you and your CLL doc probably have the best shot at predicting which one will work best for you. Personally, I'd pick Calquence, as that 15% Afib side-effect (that's one out of every 6 or 7) was too much for me. But, that's ME, not you.
Good luck, and remember, both drugs are MILES ahead of the choices we had only a few years ago.
The irony is that Dr. Maria Fardis oversaw the development of Ibrutinib at Pharmacyclics and then went to work for Acerta where she oversaw the development of Acalabrutinib.
I have been on Acalabrutinib for over 5 years. I have had no side effects. Acalabrutinib is considered a second-generation BTK inhibitor.
It will be up to the doctors at MDA. They also are rolling out CAR-NK. This is more exciting than Venetoclax. CAR-NK was mentioned the other day. A link is posted below.
The last 6 years have seen the great renaissance in new drugs to fight blood cancers. When I was on W&W, there was only one great hope - Ibrutinib. Now there are so many exciting treatments.
It's a worldwide trial by Acerta. My oncologist told me about it. Here in Vancouver they will recruit 8 participants. There are three randomized arms - the first is acalibrutinib, venetoclax and obinituzimab, the second is acalibrutinib and venetoclax which is the arm I'm in and the third is BR chemotherapy. I'm going into my 9th month and the total length of the trial is 14 months. They are recruiting 800 people worldwide. Hope this helps.
Hi, it’s important for clinical trials that if you enroll in it you are happy to take it all of the arms. This is why a study with chemo as an arm would only really work in a country where outside the trial patients would have to take chemo. Having said that we categorically Do not know that chemo is going to be worse than the newer drugs in all patients and particularly not in the really long term. That’s why I volunteered for a trial that had chemo as an arm and actually it worked really well for me in the end. Chemo can be curative for some patients.