First line above at 69Y: Venetoclax vs Ibrutin... - CLL Support

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First line above at 69Y: Venetoclax vs Ibrutinib vs BR

paula_dae profile image
13 Replies

Hello All,

After consulting 3 of the best available doctors I could find all of the suggest different options and its up to us to chose. So far:

1) Venetoclax -they claim its the least side effects treatment (despite she does not have 17p deleton they say will be very effective)

2) Ibrutinib effective, but too risky in therms of side effects

3) Bedumastine + Rituximab cost effective but risk of infection (extra added cost)

From all the options I also seem to prefer Venetoclax, what is your opinion and experience? Is Venetoclax good first line treatment option?

Regards

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paula_dae
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13 Replies
HopeME profile image
HopeME

How old is the patient? What are his/her other ailments? Venetoclax is certainly the miracle drug for our disease. Ibrutinib is also among the best treatments available. It is encouraging that Ibrutinib and Venetoclax are part of the treatment options being discussed. Are any of the experts CLL doctors? Is it possible to get a combination of Venetoclax and Ibrutinib? Combinations are cutting-edge of CLL treatment.

Best,

Mark

MelioraDay profile image
MelioraDay

I am taking Venetoclax only as first line therapy for my 13q deletion mutated CLL. I have had no side effects at all. My labs were completely normal by four weeks into the ramp up. My fatigue prior to treatment completely resolved and I’m feeling great with no problems. Everyone’s response is different, but for me it has been wonderful.

paula_dae profile image
paula_dae in reply to MelioraDay

So encouraging, thank you <3

AdrianUK profile image
AdrianUK in reply to paula_dae

The clinical trial of venetoclax given in combo with obinituzimab had outstanding results. And I think a lot of patients are going to be opting for that as a first choice in the future. If you can’t get obinituzimab combining it with rituximab may be just as good or almost as good. Many people get to MRDU and a complete remission on VO or VR.

Pawin profile image
Pawin

I'm 62 with 17pDel, on ibrutinib, no side effects worth noting apart from slightly puffy ankles, occasional rash, and skin slow to heal. I should add my blood results have improved dramatically.

Shaheenji profile image
Shaheenji in reply to Pawin

Well Pawin, my story is just like yours. May God help us all the suffering people on planet Earth. Wish you good luck.

hhk50 profile image
hhk50

Hi Paula, I'm 69 and have been taking Ibrutinib for 15 months. A few bouts of side effects but minimal now and my bloods are normal. I asked the doc about switching to one of the new combo therapies that are in trial and he said, "don't mess with success". The Ibrutinib is working fine now so let's ride that train until it stops working or the side effects become too problematic.

Smakwater profile image
Smakwater

paula_UAE,

You cannot tell someone what they already know.

Hmm, I did not say this. "Someone" else did.

JM

Billhere profile image
Billhere

youtu.be/Cuy7mJFIKfM

larrymarion profile image
larrymarion

Paula_UAE, the BR vs. novel agents like Ibrutinib or Venetoclax depends on several factors:

* age

* general health

* blood markers--for example, BR is not recommended if you have 11q. if you have tp53, V may be an excellent first line choice

* financial status--if you opt for I, you may have to take the drug for many, many years. Will your insurance cover it now and in the future? Many of the clinical trials involving I and V or V plus another drug are limited duration--two years and you're done.

* FDA approved V + obinutuzumab earlier this year for first line patients. fda.gov/drugs/resources-inf.... You should ask your hemocs about this combo vs. just V.

Doggoneit101 profile image
Doggoneit101

I was given the same 3 options. I am 46 and have CLL/SLL deletion 13q non mutated. I was scheduled Monday to start V+O but insurance denied the O. My specialist is appealing the denial. I was all prepared to start so this is very stressful for me. I still have an appointment Monday to get the V script. Wondering if I should wait till the O is approved. Best of luck to you. Reading tons of good outcomes with V+O lately.

Mystic75 profile image
Mystic75 in reply to Doggoneit101

Hope you can get this resolved quickly.

Hoffy profile image
Hoffy

If you are unmutated BR should be off the table. Last year at the American Society of hematologist papers showed that the targeted drug Imbruvica is more effective and less harmful than the cytotoxic agent’s BR and FCR.

Venteoclax is very good.

Imbruvica is good. We hear more about the people that have side effects but not the ones that do not.

The combos are looking very good if you can get on a clinical trial some of these agents. I plus V, V plus O. The trend is to do a combo for about a year and then be done for a while.

Be well,

Hoffy

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