Switching from acalabrutinib to ibrutinib

[pbaddi]

After 1 year 3 month of acalabrutinib, now lymph nodes are increasing. So our doctor suggested to shift from acalabrutinib to ibrutinib. Anyone here who did the same. Bit worrired

[AussieNeil Partner Administrator]

Your worrying is understood, because as I mentioned in an earlier reply to you, healthunlocked.com/cllsuppo..., if acalabrutinib stops working, your next choice of BTKi needs to be a non-covalent bonding one. Pirtobrutinib is the only non-covalent BTKi that can be currently prescribed in the USA.

If acalabrutinib is no longer keeping your CLL under control, ibrutinib won't do it either. The only time you might want to try switching to ibrutinib is if you can't tolerate acalabrutinib. Given acalabrutinib is better tolerated than ibrutinib and has less off target activity, it would unusual to find yourself better off on ibrutinib.

Neil

[pbaddi in reply to AussieNeil]

Thx Neil

[LynnB1947]

PBADDI - I agree completely with AussieNeil's response. To be frank, your doctor knowledge or lack thereof for treatment of CLL scares me. Is there another doctor you can go to who is a CLL specialist?

What your doctor is suggesting is contrary to what I've been hearing CLL specialists say for the last 5 years or more. I would be totally surprised if Ibrutinib or any other BTKi might work except for Pirtobrutinib which is a non-covalent BTKi. Otherwise, venetoclax or a clinical trial would be the way to go ... for my 2 cents worth.

Wishing you the best ...

LynnB

[pbaddi in reply to LynnB1947]

Thx, lets hope for the best

[larrymarion]

Echoing what LynnB1947 said, it's time for a second opinion. From a CLL specialist. The CLL Society offers online second opinions with experts.

In addition to moving to pirto, you and your hemoc should discuss moving to venetoclax, as Lynn noted. I did that and it worked out great. I got 3 years of uMRD.

Another approach may be to go the obinituzimab and venetoclax treatment protocol.

[pbaddi in reply to larrymarion]

Thx, we have doc appointment after 15 day wll discuss with him

[pbaddi]

Thx..lets hope for the best

[CoachVera55]

I am a newbie but if the 2nd generation BTKI isn’t working wouldn’t you go to a 3rd generation instead of backwards to a 1st generation BTKI? Or as suggested a non covalent BTKI or off to O&V or trials but not backwards🤔 Yes enlist a new Onc but definitely get a CLL Specialist on your case #GODSPEED🙏🏾

[pbaddi in reply to CoachVera55]

Our doc suggested iBrutinib..Thx

[CoachVera55 in reply to pbaddi]

Yes I gathered that your doctor suggested it but as you have heard, it doesn’t seem like a good suggestion. They created later generation drugs that improved on the previous one, its a questionable choice in my humble opinion. But I have read that Acalabrutinib is the mildest of the three. Please keep us posted #GODSPEED

[pbaddi in reply to CoachVera55]

Sure thx

[DriedSeaweed]

Are you tethered to this doctor for some reason?

If you give the gist of what region you live in someone may suggest a good second opinion.

There might even be clinical trial opportunities where you could potentially get extremely good drugs for free. Also, when you are on a clinical trial you tend to get special treatment since you are an asset to their research.

[pbaddi in reply to DriedSeaweed]

Hi, we live in India ...

[DriedSeaweed in reply to pbaddi]

Unfortunately I only have seen a small handful of people from India on this website. Perhaps there is a different forum people would be more inclined to use in your country?

It is a shame they don’t do more clinical trials in India. It is a huge population with lots of smart doctors and scientists.

[pbaddi in reply to DriedSeaweed]

Agree.. But cant help. Situation is bad here

[DriedSeaweed]

I think I see you had FCR and acalabrutinib. Did you ask your doctor if Venetoclax is approved in India?

[pbaddi in reply to DriedSeaweed]

Hi, yes it is approved but he want to try ibrutinib for some time. He said Venetoclax has many side effects..

[DriedSeaweed in reply to pbaddi]

During your appointment I think it would be important to argue that since ibrutinib is just acalabrutinib with more side effects the cancer cell count will keep going up and up and up and would make venetoclax issues worse once you finally get to it.

Speaking of venetoclax side effects… they actually aren’t too bad compared to issues people have had with ibrutinib. You just need someone to manage the ramp up and get IV fluids on the days the dose is increased. Then have labs the following day to determine if IV fluids are needed again. Allopurinol can help with uric acid.

If the lymphocytes are manageable at the moment it might be the perfect time to use venetoclax with an antibody. Then… once the remission from it is over (hopefully a couple years or so) a newer BTKi or clinical trial may be available.

I think you need to fight for venetoclax during the appointment. Try not to be shy and let the doctor’s authority silence you.

Not to scare you but you know venetoclax and antibody would have a chance to work whereas ibrutinib is I dare say guaranteed to do nothing and cause more side effects.

[pbaddi in reply to DriedSeaweed]

Thank you for your support

[Alex830]

When acalabrutinib stopped working for me, my CLL specialist recommended Venetoclax in combination with Rituximab or Pirtobrutinib. Zanubrutinib was also not an option for me because it works identical to acalabrutinib. Unfortunately Pirtobrutinib wasn’t an option for me because my kidney function was too low. Venetoclax has less side effects than ibrutinib. I actually feel better on Venetoclax than on acalabrutinib. There is also a test to see if you have become resistant to acalabrutinib.

[pbaddi in reply to Alex830]

Thx Alex, Tomorrow we have appointment with doc, will discuss with him...