Latest Treatment for CLL

[ballynb]

What seems to be the best treatment for CLL at this time?

[GMa27]

Depends on your markers and age. I did chemo 2 years ago. Very uneventful and reached remission after 3 rounds. I am 13q mutated and 65 now.

[cajunjeff]

Welcome Bally. I see from your profile you are an 80 yr old living in the US.

While there are many possible treatments for cll, I think the two most likely in consideration for you would be ibrutinib (an oral btk inhibitor drug), or venetoclax (a different type of oral inhibitor) in conjunction with obinutuzumab (a monoclonal antibody).

Most other options for you would be found in clinical trials. We have the most data on ibrutinib and for many its an easy drug to take with mild to moderate side effects. If you have any heart issues, venetoclax might be a better choice as ibrutinib is linked to afib. Acalabrutinib, a drug like ibrutinib, is thought to have less risk of cardiac side effects.

I don't think a doctor would recommend any chemo for you at your age and I wouldn't want chemo if I were you anyway. Ibrutinib works very well for most frontline users and might be the only cll drug you will ever need.

The best advice you will get on here is to see a true cll specialist who can walk you through your options.

[farber in reply to cajunjeff]

Hello, My father is 92 years old and just started Acalabrutinib. He was many years wait and watched. But now he is on medication and so far he is doing well

[caven]

Bally: It's important to keep in mind that CLL is NOT a unitary disease; rather, it has many variants each of which serve to influence the decision about which is the best treatment to target the particular combination of CLL-factors each patient carries. (As GMa27 writes: "depends on your age and markers.")

So, as cajunjeff indicates here, the ONLY way to get an accurate pointer as to which treatment will likely serve you best, it is CRUCIAL to have tests done and diagnoses made by a CLL SPECIALIST.

While there are general hematologists and oncologists who have <some> patients with CLL they do not have access to the equipment, lab-access, and most vitally the UPDATED KNOWLEDGE that a CLL-specialist has at their fingertips. This recommendation is made all the more pertinent because the CLL-treatment advances of the past five years outrank all the knowledge that was previously gained.

There's simply NO SUBSTITUTE for getting a medical appraisal from a medical professional at the cutting-edge.

Good luck in your journey.

Caven

[ballynb in reply to caven]

Was diagnosed by an oncologist about 5 years ago. Started out with Gazyva, infusion lasted less than an hour because of a severe reaction. Next was Ibrutinib, had to stop because of reactions to several heart medications. Currently on Venclexta for almost 2 years. Taking 300mg daily. Started with 400mg, had to drop down since 400 was to much.

[cajunjeff in reply to ballynb]

That background info would have been helpful to know. You are on venetoclax now which I think is the best cll med for you based on your history. So are you just confirming you are on a good med?

The options start to narrow after ibrutinib and venetoclax. Since your issue with ibrutinib was tolerance and not resistance, if you have to stop venetoclax for any reason you might could try acalabrutinib.

The are also other monoclonal antibodies than gazyva which might carry less risk of an infusion reacti

[ballynb in reply to cajunjeff]

Many Thanks for all the replies.

[lankisterguy Volunteer in reply to ballynb]

Hi ballynb,

It would help us, and you, in the future, if you copied the details above into your profile.

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To access your profile- please click on your own icon in the far upper right of this screen, and from the drop down menu choose "profile" and then on the next screen, click "edit profile" in the white box - upper right.

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Len

[lankisterguy Volunteer]

There have been many recent educational videos on this exact subject.

ascopost.com/issues/march-1...

patientpower.info/chronic-l...

onclive.com/peer-exchange/m...

pharmacytimes.com/publicati...

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And IMO the short version of the answers sound like what financial stock advisers say: First gather the basics (age, prognostics, existing resources/insurance, etc.) then determine what is the objective of the client (limited duration treatment vs. stable control of disease).

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Here is a link to an audio replay from the Leukemia & Lyphoma Society (or you can download the slides and read the transcript)

lls.org/patient-education-w...

lls.org/sites/default/files...

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Len

[cllady01 Former Volunteer]

Hi, and welcome Bally,

As others have stated, treatment is based on your individual CLL profile as well as your over all health and your age. It would help to know a bit more about your personal situation with CLL.

if you are newly diagnosed the following link is to both help you navigate this site and to give you good starter points to keeping up with your health overall while you monitor your CLL levels.

healthunlocked.com/cllsuppo...

If you are now being told by your Dr. that you need to be treated for your CLL, the information in regard to your blood draws and the tests given to diagnose you CLL is where treatment that is best for you can be determined.

If you have or can get copies of your diagnostic tests (they are yours for the asking) you can read what we mean by markers and profile and share if you want to do so.

Many of us were diagnosed by a General Practitioner or Primary Care doctor and referred to a Hematologist/oncologist. Some of us see CLL/ Lymphoma Specialists. It is a good thing to have a Dr. who has a lot of experience with CLL.

I hope you will continue to ask questions.

[PJWheeler]

While I can only speak for my treatment, at 58 years old and generally physically fit, Ibrutinib (Imbruvica) @ 420 milligrams seems to have worked well for me, as I've had no ill or adverse side effects and my white blood cell count is down to the normal range after 6 months of treatment

[janvog in reply to PJWheeler]

Same exactly in my case. I am 86 and started IMBRUVICA at 84 . Walking on treadmill and climbing stairs probably support the results.