Hi,
Age is 46. Six cycles of FCR is done in Oct 2019. Latest absolute count of lymphocytes is 6108. But lymph nodes are increasing . Specially under arms the lymph node size is around 5 inch and near neck is 4 inch.
Doctor suggested to take either Acalabrutinib or Ibrutinib.
Which one is good and which diet need to follow?What precaution need to take?
Input is really helpful. Please suggest.
Thx 
Hi pbaddi, I started taking Ibrutinib way back in 2017 because that was the only BTKi available. Experienced many side effects which cause me to stop taking it till Acalabrutinib was available. Do take a look at my profile where I documented my journey. Seok
I've had both. I was on Ibrutinib as part of a clinical trial for three years 2018-2021. I had pretty severe bone and joint pain, miserable "hangover"-like mornings and AFib which put me in the hospital 3 times. I was switched over to Acalabrutinib last year and all those symptoms abated but within weeks I developed pretty severe heart irregularities - PVCs (premature ventricular contractions) and bigeminy which had me hospitalized twice for a week each time. They took me off Acalabrutinib and I'm wearing a heart monitor to see if the heart irregularities improve and may need a pacemaker. Hard to say if it was caused by the Acalabrutinib or if it was going to happen anyway but it is suspicious. I'm off meds for now and when I need to resume treatment my hem-onc is suggesting something other than Ibrutinib and Acalabrutinib.
Ibrutinib and Acalabutrinib are in the same family of drugs, as you can tell from the name endings. Venetoclax is different. Often used in combination with a MAB.
Thx
Hi pbaddi I was on imbrutinib for only a month and had to stop due to severe bruising and bleeding. They then put me on Accalabrutinib. I’ve been on it for 9 months and my bruising and bleeding has really reduced to acceptable levels. My fatigue has also reduced since I went onto accalabrutinib and vitamin B3.
I haven’t experienced any heart problems and my bloods are now good and stable.
From talking to fellow users it seems to effect people differently, so whatever you choose will be the right decision, however if the side effects are too severe switch straight away.
Good luck on your journey.
I started on Ibrutinib during my Obinatuzamab cycles and was in remission after 240 of diagnosed. Had knee joint pain so moved to acalabrutinib, no issues and on it until it stops working. Only diet change has been no grapefruit or seville oranges.
Thx for your input
Hi, Acalabrutinib generally has fewer side effects. It brings lymph nodes down very quickly too. I went straight to it so I don’t know if having FCR first tips the balance either way but it has worked very well for me so far. As others say, the only dietary concerns are grapefruits and Seville oranges.
@Pageboy, how long it took for you to reduce the lymph nodes?
Just a few days to start seeing the difference, especially in my neck. Only a few weeks to go altogether. My spleen maybe a little longer to get back to normal, but the reduction I felt quickly. Even now, a year and a bit later on Acala, I can’t quite believe they’re not there having lived with them for eight years.
I have been taking Acalabrutinib since August 2021 with so far good results. I wasn't offered anything else so can't compare, I was diagnosed in 2018 and watch and watch for 3 years.
Thx for your input
I am 53 and completed 6 cycles of FCR in 2018. In late November I found I was neutropenic and Anaemic, with enlarged lymph nodes.
I started Acalabrutinib in January.
Lymph nodes have reduced and blood count is back to normal levels.
I don’t have any significant side effects. I monitor temperature, much like with FCR, and also monitor my blood pressure daily.
As regards diet I was told to be more cautious at least during the first few months until my blood levels were stable, so again much like with FCR; No grapefruit or seville oranges, avoiding shellfish, rare cooked red meats, runny eggs, bottled water etc.
AntonMB , how long did doctor asked to take this ? life long ?
It is ongoing treatment with no fixed end date, my understanding is I will continue to take it as long as it is working and I can tolerate it. I have already noticed an improvement in my energy levels and although I will continue with monthly blood tests, my consultant is happy that with the progress already made these can be phone consultations, with only occasional face to face appointments. I will have a CT scan roughly 6 months after I started treatment to further check progress.
I’ve been on Ibrutinib just a little over 5 years and with no negative side effects. Previously I had FR and five years later BR. Never would I have thought that taking three pills daily would give me my life back. My large lymph nodes disappeared within days and my labs went down to normal soon. I am enjoying the benefits of Ibrutinib but not everyone is as lucky. Good luck with your decision. Sally
Thx for your input
You ask a good question. My understanding is Ibrutinib has more negative side effects than Acalabrutinib but the understanding/history of Ibutinib is deeper because of the length of time it has been in use and the number of patients who have been prescribed the medicine. The advantage Ibrutinib has regarding history declines every day as the history of Acalabrutinib deepens and thus the understanding increases.
What does your doctor say his/her experience has been prescribing both drugs? I’d be very interested in hearing this information if I were you. My personal opinion is I’d probably lean toward Acalabrutinib unless I was dissuaded by my doctor.
Please let us know what you decide.
Best,
Mark
Any BTK inhibitor controls, not cures CLL so once you're on it, that's it for life.
Your statement is generally true but not entirely true. Some patients have opted to add Venetoclax to Acalabrutinib after a period of taking Acalabrutinib alone with a goal of stopping both drugs. See CajunJeff for example.
Other patients have stopped Acalabrutinib after a period of time due to side effects without a transition to another drug and they are at least temporarily off the drug without switching to something else. See Zia for an example of this.
Finally, your statement once you’re on Acalabrutinib you’re on it for life isn’t entirely true either as this drug can fail, be stopped and replaced with another treatment.
Best
Mark
Agreed, Mark but in principle, if you're on monotherapy with a BTK inhibitor, is is going to be a continuous process, possibly for life. With combined therapies, then mixing a BTK inhibitor with Obinutuzumab or Venetoclax could well result in a long term remission without the need for further medication. Some combination therapies are still in the research phase. My own haematologist has advised against trying Acal with Venetoclax because everything is going well just with Acal and if it aint broke, don't fix it.
Hi Servrider:
I agree that Acalabrutinib is primarily a mono therapy. I just wanted to point out a couple of exceptions. Your doctor’s approach is well grounded and logical. However, CajunJeff is seen at MD Anderson so there is certainly solid science behind his doctor’s decision to add Venetoclax with the goal of stopping both drugs. Does this approach carry some additional risk? Probably, since there isn’t any clinical trial data supporting it from what I know but unfortunately this is how doctors learn by trying different approaches within certain limits.
Have a good day,
Mark
I am going through the same decision process. It seems from what I have read that alca generally has less side effects, and comparable efficacy. It is important to remember that for most people these work well for many years. Nothing is guaranteed, and everyone responds differently - but for the majority it is a game changer.
Started on Acalabrutinib a year ago. My cll specialist advised Acalabrutinib over Ibrutinib because he was concerned that there was a greater chance of developing heart arrhythmia with Ibrutinib.
No side effects with Acalabrutinib other than morning headaches for several weeks at the start: Tylenol did not work as well as a couple of cups of instant coffee (which is high in caffeine)
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