Calquence not really working

[Alex830]

I somewhat expected this result but still disappointed. After additional blood tests, my ALC stayed around 60 and is trending upward albeit slowly. My oncologist wants to give it till the end of the month to see if it changes. If not, we will start looking into different options. Luckily my eGFR has gone up to 45 which gives me some more options I hope. My kappa light chains are still high but have gone down considerably since March. Would another BTK inhibitor work or since Calquence isn’t really doing the trick that’s no longer an option. Feel a bit overwhelmed and scared. What if ventoclax is not successful either. What other choices are there. I am just overthinking it right now, I have to tell myself it will all work out.

[cajunjeff]

Alex, there are two types of btk inhibitors which are defined by the way they bind to the btk protein. This binding blocks the proliferation of Cll cells.

Traditional btk inhibitors like ibrutinib and acalabrutinib bind covalently to the btk protein. It’s all over my head, but I understand covalent binding means that acalabrutinib and the btk protein share an electron.

The other, newer type btk inhibitors, found mostly in clinical trials, bind non covalently. Pitrobrutinib is an example of a non covalent binding btk

To my understanding if your are resistant to a covalent binding btk inhibitor drug like acalabrutinib, then you are resistant to all btk drugs that bind covalently. You might, however, do well on a non covalent binding btk drug. What are the odds and for how long? I don’t think they know.

Venetoclax is the go to drug for those who are resistant to btk drugs. Your odds of doing well on venetoclax are good. For how long? Once again, I don’t think there is enough data to know

So with venetoclax and a non covalent binding btk drug, you have two good options if you are resistant to acalabrutinib.

It’s gets harder for those of us who fail both type btk drugs and venetoclax. Cat T, Car nk and a transplant are all options, just more challenging options And all the while we have new drugs in the pipeline which may help.

I stress out if my mind wanders too far forward as to what will happen next with my Cll . You have options now and a couple good ones . If those options fail, history would tell us there more options as time goes on.

[lankisterguy Volunteer]

Hi Alex830,

You have a great reply from cajunjeff and I hope you are seeing a CLL expert doctor- this is where their experience and wisdom is needed.

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I was diagnosed in 2008 and had my first treatment in 2010, and have changed targeted treatment drugs 5 times see healthunlocked.com/user/lan....

Venetoclax was the best of them for 6 years.

Each time my CLL expert and I faced the decision there were entire different choices and the options had changed within the previous 6 months.

Ask your doctor to take time to explain the options to you, and if you are not seeing a CLL expert then use this service to get a free 2nd opinion and detailed explanation: cllsociety.org/programs-and...

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Len

[Alex830 in reply to lankisterguy]

Thank you. That gives me hope. I do see a CLL specialist.

[lankisterguy Volunteer in reply to Alex830]

You mentioned "oncologist" and as far as I know all of our CLL experts are hematologists, so I assume your doctor did not treat exclusively CLL patients. Your type of situation is when a doctor that runs clinical trials and attend ASH & ASCO conferences is very important.

Len

[Alex830 in reply to lankisterguy]

My oncologist/hematologist is a CLL specialist. I got a second opinion through the CLL society from Matthew Davids and he recommended my current CLL specialist. My doctor is also on the list of CLL specialists of the CLL Society. He actually consulted with CLL specialists from Dana Farber, MD Anderson etc. (apparently they have a chat group) at the start of my treatment because my CLL is rather unique.

[lankisterguy Volunteer in reply to Alex830]

That's really great, and you seem to be very well cared for. As you say, the complex / unique CLL patients need all the expert horsepower they can get, and it sounds like you have that.

Len

[AussieNeil Partner Administrator]

Hi Alex,

Further to your two very good replies from Cajunjeff and Len, if, as expected, you are switched to your next line of treatment, make sure that you stay on Calquence right up to when you switch. It's probable that Calquence is still somewhat keeping your CLL under control. Other members in your situation have seen their CLL take off as soon as they stopped their BTKi drug while waiting to be advised about their next treatment.

Great that your eGFR has improved!

Neil

[Alex830 in reply to AussieNeil]

Yes, indeed! I was told to continue with Calquence until we decide on the next treatment.

[Big_Dee]

Hello Alex830

A lot of new drugs coming down the pike but learn all you can so if and when time comes you can make an informed decision. Blessings.