Personalized Treatment Options From 5 Experts ... - CLL Support

CLL Support

23,335 members40,042 posts

Personalized Treatment Options From 5 Experts for People With CLL

lankisterguy profile image
lankisterguyVolunteer
10 Replies

The following seems to be directed to doctors, but if appropriate you may want to suggest it to your Hem/Onc or GP. The CLL experts listed are all USA, but most of the choices are available world wide, and extensive predictive testing is not required.

Personalized Treatment Options From 5 Experts for People With CLL

-

Farrukh T. Awan, MD | Jennifer R. Brown, MD, PhD | Nicole Lamanna, MD |

Anthony Mato, MD, MSCE | Jeff P. Sharman, MD

-

Access this updated, free Interactive Decision Support Tool to get expert, individualized treatment recommendations for your patients with CLL based on specific patient characteristics that YOU enter.

Access the Tool - clinicaloptions.com/oncolog...

-

Don't have the CCO Interactive Decision Support Tool app?

Get access to all CCO decision support tools by clicking the app store button below or search “Decision Support” in either the App Store or Google Play store.

-

Provided by Clinical Care Options, LLC.

Produced in collaboration with the CLL Society.

-

Len

Written by
lankisterguy profile image
lankisterguy
Volunteer
To view profiles and participate in discussions please or .
10 Replies
Denisguay profile image
Denisguay

Que dicen,?

lankisterguy profile image
lankisterguyVolunteer in reply toDenisguay

Translated: What do they say,?-

It's an interactive tool, you need to answer a series of questions about the CLL patient and treatment history to get a suggestion for the next treatment.

-

Len

Denisguay profile image
Denisguay in reply tolankisterguy

Do you know if in any case they talk about reducing ibrutinib? Days or Doses. Thx.

michaeledward profile image
michaeledward in reply toDenisguay

I don't know what the interactive tool says, but I can only tell you what I was told by NIH a couple years ago: "There aren't any routine reductions in reducing Ibrutinib from 420 mg." If there are intolerable side effects, however, the dosage can be reduced or stopped.

Denisguay profile image
Denisguay in reply tomichaeledward

THAT IS A REDUCTION ROUTINE IN ITSELF.

michaeledward profile image
michaeledward in reply toDenisguay

I only told you what NIH told me. If you think you know better, suit yourself.

Denisguay profile image
Denisguay in reply tomichaeledward

And I told you that it was a reduction routine by itself. Yes.

lankisterguy profile image
lankisterguyVolunteer

I'm sorry, we seem to have a communication problem. This is a general tool to be used by a doctor to help your medical team decide on changing to a new drug. -

Your questions appear to be medical advice that should come from your medical treatment team. And your profile healthunlocked.com/user/Den... is incomplete, so I cannot see what country and medical system is involved.

-

Do you have a CLL Expert doctor on your team?

If not can you find a CLL expert in your country using this and choosing your country:

cllsociety.org/newly-diagno...

-

Len

Denisguay profile image
Denisguay in reply tolankisterguy

I understood, and Yes, I have my Doctor logically, and I have been taking ibrutinib for 2 years, the first year 3 pills, the last year 2 pills, but he has no alternative but to wait and w, and since I don't feel well, dizzy, memory, bad body , tiredness, I ask you because perhaps you read the testimonials in that tool and you could have found some people who would have a schedule or reduction in intake per day or dose. Thx.

PaulaS profile image
PaulaSVolunteer in reply toDenisguay

Hi Denisguay,

5 years ago I started on Ibrutinib - 420 mg daily (3 capsules). I had bad side effects, most of which stopped by themselves after about 2 months, but some continued.

After 6 months on Ibrutinib, my doctor said I could reduce the dose to 2 capsules (280 mg).

After another 6 months, I reduced to 1 capsule (140 mg).

I'm still on 140 mg (tablet now, not capsule, but presumably same contents).

My CLL continues to be well controlled on the 140 mg. I have good prognostic markers though (13q deletion, IgHv mutated). For people with other markers, a reduction in dose might not be appropriate.

Paula

Not what you're looking for?

You may also like...

BTK inhibitors for the treatment of CLL - the current state of play of 'brutinibs'

In just a short time, in many places, BTK inhibitors (BTKi) have largely replaced...
CLLerinOz profile image
Administrator

Support for CLL Patients

This HU site, where we share information, experiences and friendship is a massive support for many...
Jm954 profile image
Administrator

CLL Treatment Options

Hi, I have been diagnosed with CLL for some 12 years on a watch & wait and unfortunately that has...
TopGun1001 profile image

B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL

Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes....
Phs2385 profile image

Opportunity to support the listing of Acalabrutinib and Venetoclax for the treatment of Australians with CLL

No matter where you live, you can support the access of Australians with CLL to Acalabrutinib or...
AussieNeil profile image
Partner