after Venetoclax

[Marymary19]

is there any hope of therapy after ibrutinib and ventoclax no longer work for an 80-year-old lady?

[Justasheet1]

Mary,

Perhaps using Pirtobrutinib prescribed off label is a possibility. I would seek out the advice of a CLL expert.

Jeff

onclive.com/view/dr-mato-on...

[Jm954 Administrator]

There will be but the options will be limited and determined by the level of fitness. Are you thinking about yourself or someone you care about?

[Marymary19 in reply to Jm954]

Thank you for replying.

I am thinking about my mum.

From January 2022 she was on venetoclax plus rituximab. In May 2022 she gets covid, stopped venetoclax, stays in hospital (covid positive) with covid pneumonia and bacterial pneumonia for three months. She also gets sepsis from esterechia coli. Her haemoglobin collapses and for a year we have been surviving on one transfusion a week.

The hospital haematologist claimed that my mum's marrow would never recover. The haematologist who had been following her for years was convinced that once she was back home from hospital and without antibiotics, the marrow would start to function a little again. But it didn't.

Back home, we resumed venetoclax plus EPO three times a week for six months, but the situation did not improve. In fact, even the platelets count were down .

In the last month, my mother always had about 20000 platelets. The doctor stopped venetoclax and started cortisone. Last week she felt ill and is now back in hospital in intensive care for sepsis (they found a bacterium in her blood and urine).

I don't understand if the haematologist is convinced that in my mum's case there is no more treatment for CLL. I have decided to ask another haematologist for an opinion. I have read that pyrtobrutinib might help but it has not yet been approved in Europe. I was thinking maybe a combination of drugs. Unfortunately my mum has the TP53 mut deletion.

I am so desperate and would really like my mum not to suffer any more.

[Jm954 Administrator in reply to Marymary19]

Hi, thinking of your Mom, how is she?

Jackie

[bkoffman CLL CURE Hero]

Clinical trials, pirtobrutinib off label, duvelisib and sometimes the combination of I+V works when they did not as single agents.

[Jm954 Administrator]

Hi, thanks for the extra details.

The difficulty seems to be that your mom's bone marrow is not resilient enough to cope with any treatment at the moment. The most important priority is for her to recover first from her sepsis. Unfortunately, that will also have a negative impact on how her bone marrow functions at the present time.

When she is recovered then the options can be explored but you're probably looking at enrolling in a clinical trial which will want minimum levels for her blood counts and it doesn't sound as though she could meet them currently. Resumption of Venetoclax at a low level could also be an option as it doesn't sound as though she is resistant.

I hope your lovely mom makes a good recovery from this episode of sepsis and can get back on track. A second opinion is always a good idea, please let us know how she is.

Jackie

[Ellieoak]

Yes there are a few new Drugs : Zanubrutinib, Pirtobrutinib, both can bring your numbers back down, Good Luck, Anna

[AussieNeil Partner Administrator in reply to Ellieoak]

Mary,

As Anna and Jeff suggested, Pirtobrutinib should work, but it's only available through a clinical trial for the moment - hopefully soon to change. Acalabrutinib, ibrutinib and zanubrutinib all inhibit in the same way, through covalent bonding, so if ibrutinib no longer works, neither will acalabrutinib of zanubrutinib.

Pirtobrutinib is one of the third generation 'brutinibs' that bonds non-covalently. Others, also available through clinical trials are mentioned in this post: healthunlocked.com/cllsuppo...

You can search for suitable clinical trials by using your country and the following terms

clinicaltrials.gov

Condition or disease: CLL

Other terms: relapsed

Country: (Where your Mum lives)

As Jackie notes "Resumption of Venetoclax at a low level could also be an option as it doesn't sound as though she is resistant."

So there are good reasons not to give up hope. I hope you'll soon be able to get her better, so that she can try something new for her CLL.

Neil

[Jm954 Administrator]

I’ve been thinking of you all, how is your mom? x