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
Ibrutnib vs Acalabrutinib
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Carl123
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AussieNeilPartnerAdministrator
We don't have the long term data on Acalabrutinib that we have on Ibrutinib. We do know that it has less off target related side effects than Ibrutinib and it appears to have a lower cardiovascular risk profile.
Neil
So in your opinion which is better to start with?
It is your choice to make, based on how you feel about what you learn from reading here and how each fit with your circumstances, susceptibility to side effects, cardiovascular risk and so on. Perhaps that decision can be aided by members replying who have been on both medications.
Neil
Yeh haven’t seen to many people on
Here post much about Acalabrutinib though so there is some unknowns
Hi I’m on Acalabrutinib I have no side effects on it at apart from a headache one day just my thought now on venetaclax as well still no side effects
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.
calquence was not available when i started imbruvica. I have had no side affects myself.
However imbruvica is once a day dosing and calquence is twice a day. not a big deal
I’ve been on Imbruvica for almost 2 years. No side effects other than lymphodema in one leg.
oh that’s good to hear that no side effects glad your doing good
Hi Jaming
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
Hi ImGrammy
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
Hi Jaming
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.
Hi Carl
I am on Imbruvica for two months, all good it is a miracle!!
Best of luck
Littledab 😃
Which drug is cheaper? Are they both the same price? I would ask the question. The price may be the tiebreaker.
Carl123• in reply to
Finding is covered in my country for either or so not an issue at the moment but confused on which to choose
Which country?
🇨🇦
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 💕
Beargrove75• in reply to
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.
Beargrove,
Take care, it's always good advice to discuss any medication changes with your Doctor before making any revisions or omissions. I'm not sure the two are interchangeable in the way you suggest.
Best regards
Jackie
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.
That’s good to
Hear and glad your doing good in Acalabrutinib, how many pills per day you take and is this your first treatment?
Where do you get you prescription filled. Calquence was $4,000 more a month than Imbruvica
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.
Good luck,
Bill
Thanks bill for the comment and glad your doing ok, are you muted or Unmutated?
Why you think it works my slowly is it not as strong?
I'm unmutated.
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 think we should be careful of assuming that what you saw would apply to other people. And in any case I suppose it’s possible that the initial drop would have been faster on ibrutinib and perhaps slowed down even if you’d staid on it.
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.
Bill1288
Good to hear bill, did you find that both worked the same or was one faster then the other?
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 .
Bill
I've been on Ibrutinib for 8 months. The only major side effect that is not attributable to anything else is that I now have the wavy hair that I always wanted.
Carl123• in reply to
Lol 😂
Mamayoda• in reply to
Same here! It thinned for about 6 months, then it got thick and wavy. I love the new hair!!
I do get mouth sores and cracks in my fingers, but my lymph nodes went down significantly after starting it. This October will be three years.
I have been on Acalabrutinib for three years four months. No side effects. I am MDR. I never took Ibrutinib.
Carl123• in reply to
How long did it take to get MDR
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
You’re also very fortunate to have choices now , lots of people do not have that luxury
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.
Update:
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.
Hi Carl1987
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.
Good luck!
Gary
Carl,
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.
Carl123• in reply to
How were you on it for 5 years?
• in reply toCarl123
I was in the original Phase 1 trial at MDA. I started the drug on February 9, 2015 which was the tail end of the enrollment.
Carl123• in reply to
May I ask what your markers are?
• in reply toCarl123
I was unmutated and 13q deletion. I had the SLL form. I could only get Ibrutinib if I failed a first-line treatment which was generally FCR. Being unmutated there was no enthusiasm to use FCR. I was the second to last person to get into the drug trial.
Carl123• in reply to
Glad to hear your still doing well on Acalabrutinib after all this time on it, and side effects to be concerned about?
• in reply toCarl123
I have not had any adverse side effects. I did have two positive side effects. My eczema and sinusitis cleared up after decades of struggling with them.
Carl123• in reply to
Any chance you would put Acalabrutinib with venetoclax as I see many people saying this is good as well
• in reply toCarl123
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.
I've been on a clinical trail involving acalibrutinib and venetoclax. I've had no side effects from either apart from some minor headaches the first month and some minor bruising on my arm. I can't recommend one over the other. This is just my experience.
Any prior treatment before this?
How did you get on this trial ? Is it a Canadian trial ? I didn’t think combo therapies were approved in Canada
How long have you been on this trial ? Thanks
Not on trial just started Acalabrutinib
When did you start acalabrutnib? The message was for norha13, the Acerta trial.
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.
Oh I wonder if Ontario is involved in this as well?
Ask your oncologist. It's an excellent trial but I have to admit that the chemo arm did not appeal to me. Luckily I didn't get randomized into it.
What happens if u say no to one can they switch u to the one u want or u have to do that option?
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.
Nice , how are you. Doing on it so far ,?
very very well. no side effects and my lymphocytes have gone from 250 to .8. Hemoglobin is still a bit low but other numbers normal. I feel great. I will know if I am in full remission after my bone marrow biopsy on Feb. 27th.
Thank you everyone for the great advice still undecided on what my doc thinks is the best for me to do I have an apply tommorow and will talk to my doctor and see which is the better choice and smarter choice to start with.
Hi Carl
I’ve been on imbruvica For almost 3 months and it’s a miracle my white blood cells were 230,000 in three months now they’re down to 45,000 I was anemic in the beginning and now my hemoglobin is up 11.5.
Good luck on your Decision on which one to take!!
🧡💪🏻
Littledab
That’s amazing to hear, what markers do you have if I may ask
I’m in the U.K.
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