How effective is venetoclax for 17p tp53? - CLL Support

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How effective is venetoclax for 17p tp53?

Cgr2018 profile image
14 Replies

Hi!!

My brother started his treatments with venetoclax last week. His treatments with imbruvica stops working and he relapsed. He is 17p to53zHe is now on the rump up in 50 mg per week. His node in the neck wents down at the first day on 20 mg. But still a little bit inflamate. Will it totally dessapear when he increase the dose during the next weeks? His labs are good, just a little bit of low defenses, I think it’s neutropenia. His hemalotogist said that maybe he will add Rituximab.

My questions are:

How effective is the monotherapy with venetoclax for 17p to53? And if it’s better to add Rituximab?

He could be on remission a long time?

Does the neutropenia dessapear? When he recover all of the energy? He feel a tired. He is tacking for 3 days a medicine to grow up the defenses.

I want to say Thank you to all of people that helped me in this bad moments. I feel very sad a lot of time, and your experiences and knowledge will he me a lot.

Thank you for your support from the deepest part of my heart!

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Cgr2018
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14 Replies
cormac67 profile image
cormac67

Everyone's journey is different and each person tolerates treatments different depending on many factors so what works for one may not work for another. That being said, your brother is on a very good treatment so his 17p and tp53 are not as much an issue with venetoclax as it is not chemo but a targeted treatment. So, its a journey he goes on with his doctor and he will be monitored and treatment adjusted if need be.

Canuck901 profile image
Canuck901

Rituximab and Venetoclax is a good combo , did you discuss that one with your oncologist?

Cgr2018 profile image
Cgr2018 in reply toCanuck901

Yes, They say maybe they will add him Rituximab, but what are the criteria’s for add or not it?

Canuck901 profile image
Canuck901 in reply toCgr2018

Ask your oncologist i do not know but the combo seems to get you to MRD U quicker. A few members here have been treated with that combo and have solid results

lankisterguy profile image
lankisterguyVolunteer in reply toCgr2018

I have had combos with Rituxan in the past and mono Venetoclax. My doctor explained that both drugs can cause Neutropenia temporarily as a side effect to clearing CLL cells out of the blood. So he was watching for a predictable steady reduction of CLL cells without getting the Neuts number below 1.0, which can allow dangerous infections especially sepsis.

=

So as cormac67 says, each of us tolerates treatments differently...

-

Len

Cgr2018 profile image
Cgr2018 in reply tolankisterguy

Thank you Len. Today he had his last injection of Neupogen, to rise up his defenses. With the injections he has a little bit of fever, and the doctor recommeded take Paracetamol. He just had 3 injections. I pray for Neupogen works pretty well. I think because his cleaning up his cll cells that cause this temporary neutropenia. And then all the blood values become in normal range. I suppose some people take Neupogen with their rump up

Of Venetoclax to controlling neutropenia. .its that correct?

As I said his lymph node reduce a lot just in his first 20 mg venetoclax dose.

Than you so much indeed for your support! And a very big virtual hug! ♥️

lankisterguy profile image
lankisterguyVolunteer in reply toCgr2018

My doctor tries to treat me with the fewest number of drugs at one time, since he thinks that every drug has side effects and if I am getting 2 or 3 drugs at once he cannot identify if one of them or a coincidence with something unrelated caused the symptom. Neupogen has some serious side effects for some patients, expecially bone pain.

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My nodes disappeared with the 50 mg dose, and my blood numbers were fully normal before I reached the full 400 mg dose. I never was neutropenic on Venetoclax, but I was neutropenic on Idelalisib/Zydelig plus Rituximab/Rituxan.

-

Len

Cgr2018 profile image
Cgr2018 in reply tolankisterguy

He just feel a muscular pain in the leg yesterday, but it dessapear today, and he is ok today, just a little bit of fever that will dessapear with paracetamol. He just have 3 injections, and I hope Neupogen recover his neutrophils normal range during this week. He has the next appointment on Tuesday to continue his rump up. Despite this temporary neutropenia, his doctor increase this week to 20mg to 50 mg, so I think his neutropenia is not very serious, and it will be temporary as a symthom of cleaning up cll.

Is Neupogen very effective for a temporary Neutropenia? Thank u♥️

Shepherd777 profile image
Shepherd777

Venetoclax literature that comes with the drug says they get about an 82% response rate. It sounds as though your brother is responding quickly and that is a good indication.

Hoffy profile image
Hoffy

I am unmutated and 17P deleted. Imbruvica plus Venetoclax worked very well for me. See my past post. Venetoclax is a very good drug in my opinion,

Be well,

Hoffy

hanskloss profile image
hanskloss

Venetoclax very effective in 17p deletion...with Rituximab added into the fix even more so. If I had an opportunity to add Rituximab to my Venetoclax monotherapy I would do it in a heartbeat.

chuckh profile image
chuckh

I am very interested in following your brothers case. Just recently I was taken off of Imbruvica because (as I understand it).. mutations resulted in it no longer being effective. Sounds also like your brother has a swollen parotid gland.... I do too. I wish your brother the best and perhaps we can both compare notes? These last 4 years on Imbruvica caused me to slip in to complacency...it is now time to maybe be more proactive and ask a lot more questions. I value any and all input from this site. Thank you... and fingers crossed for your brother!!

Cgr2018 profile image
Cgr2018 in reply tochuckh

Thank you for your response. My brother is already in 200 mg of venetoclax, and rump up next week to 400 mg. Then the next week he will start with Rituximab for 6 cicles. Now he felts pretty well, all of the lymph nodes deseappear, and the anemia is going. I’m always very affraid about the efficacy of venetoclax and Rituximab for 17p tp53, because the hstc is risky and I pray for don’t make it. Because I think there are treatments like venetoclax and Rituximab that are very effective to kill cll.

He is young, 36, and always respond very well and quickly to all of the treatments. He had Bendamustine and Rituximab and be on remission for 3 years, and then ibutrinib for 19 months, and when he relapsed about 2 months ago, the doctors decide to put him on venetoclax and Rituximab.

Im always very interesting in all of the opinions about the efectiveness of this treatment.

Thank you, indeed

chuckh profile image
chuckh in reply toCgr2018

GOSH... that is a young man with CLL. Sort of surprising because I was of the impression it usually rears its ugly head in older people. Has no one suggested a stem cell transplant yet? That is an option but admittedly perhaps a last ditch option. I can not do one myself to health reasons... my body could not withstand it. Do keep me posted please. .. and I will do the same since I am starting same drug here in about a week.. if nothing changes.

STAY SAFE AND WELL!!! ME

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