First line treatment?

[Canuck901]

I went to a CLL specialist seminar on CLL a few days ago , this apparently the treatment plans if youre ready to be treated. Any comments ?

[Spacee]

As far as my hubby’s doc (At Moffitt Tampa Florida), he seems to think Ibrutinib for the P53 problem. Hubby also has the 17p problem.

Recently the doc has started a clinical trial though which doesn’t wait until the patients is very ill to start treatment. But to start it sooner. However to be in this trial you have to be 70yo. WBC of 100K (10 some countries). To

the Ibrutinib, he has added the immunotherapy Keytruda.

So, methinks, that if the clinical trial had not come along, the Ibrutinib would have definitely been this docs treatment of choice for hubby.

Hope that helps.

Linda

[Jm954 Administrator]

Hi,

This would not be the case in every country Canuck901 but probably in many these days, as the evidence comes in for shorter remissions if you are unmutated and treated with chemotherapy.

We are learning that a patient's FISH and mutation status is important when looking at the effectiveness of treatment and chemo can still be a great option for many people. It's short and time limited, unlike Ibrutinib and that is attractive. Possible late side effects are unpredictable and depend on which treatment is used.

Venetoclax is not on this schematic which is also occasionally used first line nowadays in some countries.

Of course, in clinical trials, there will be other combinations and newer treatments.

It's very complex.

Jackie

[Canuck901 in reply to Jm954]

Agreed but I believe Venetoclax should be used more In first line treatments especially for the age 75 <

Venetoclax definitely looks like the miracle drug for CLL

[lamboman]

18 months after starting the Clarity clinical trial for first line treatment combining Ibrutinib and Venetoclax I am still MRD negative in blood and bone marrow. Why would someone start on Ibrutinib only? This trial was amazing with so many MRD- patients.

[Canuck901 in reply to lamboman]

That’s amazing congrats . What’s your age and what was your dosing beginning or end ? Thank yuh so much for your post !

[Canuck901 in reply to lamboman]

Also what were your markers ? Unmutated mutated? 17p del? TP 53?

[lamboman]

Mutated with trisomi 12 and 19. I am 56.

[Canuck901 in reply to lamboman]

Those are the good markers , plus you’re young and able to to tolerate those medications , great news for you congrats

[lamboman in reply to Canuck901]

Thank you but I have a friend on the trial with the wrong markers and he did as well MRD neg in blood and bmb. He was in the trial 1 year earlier and he's still MRD neg today.

If you only take Ibrutinib, you'll have to do it forever. Both Ibrutinib and Venetoclax are great because they put you in MRD quickly and you can stop the drugs before you develop resistance.

For me, the worst side effects of were caused by Ibrutinib

[Canuck901 in reply to lamboman]

Thank you so much for your response , enlightening to say the least.

[Jemorgen]

I think I British Columbia, Canada they refer to 17pdel, not tp53. I know they’re related but I think? they’re not exactly the same (sorry if I’m confounding here)

[Canuck901 in reply to Jemorgen]

Dis yuh read lambomans post he was on the Ibruntnib and Venetoclax trial . Makes total sense you want to get off the Ibruntnib before your body adjusts and it no longer works . He was MRD negative after 8 months and now is off Ibruntnib and Venetoclax.

To me that is the best treatment, off the drugs. Taking drugs forever is terrible .

Obviously that’s what drug companies want for you take drugs forever so you perpetually give them money. Very sad

Johnson and Johnson doesn’t have the best reputation, roundup and other scandals

[AussieNeil Administrator in reply to Canuck901]

I think you are confusing Monsanto/Bayer (Round up) and J &J...

The trials of combination non-chemo drugs that aim to provide long term remissions after a short treatment period are evidence that CLL researchers have patient interests at heart, not those of pharmaceutical companies.

[Canuck901 in reply to AussieNeil]

AusisieNeul you would hope so but these drug companies are all about profits and sometimes not the best interest of patient s.

The combination therapies seem to be definitely working better and they aren’t really being pushed enough. That’s my personal opinion

[AussieNeil Administrator in reply to Canuck901]

While I think we would all like to see combination therapies being encouraged, we do need have these carefully evaluated and it is early days yet. What the researchers are trying to find is drugs that work synergistically without accentuating side effects. There are drug combinations where the drugs either don't provide any additional benefit (but just increase the risk of adverse events, through to where they act antagonistically!

Neil