Venetoclax

[manzelka]

First blood test since the ramp up to 400mg

Five weeks ago. followed by a phone call 2 days later from the consultant.

Good news, bloods going in the right direction.

[LovelyLilyGirl]

Great news. I’m currently receiving Gazyva Infusion and results have been amazing.. Start Venetoclax mid April.

Best to you Sending love ❤️ and positive energy.

Sally

[manzelka in reply to LovelyLilyGirl]

Thank you Iris 123, I am certainly not firing on all cylinders today.

I should have made it clear it’s my husband who has the CLL.

I hope it all goes smoothly for you too.

Take care Love sheila

❤️

[Canuck901 in reply to LovelyLilyGirl]

Excellent news! how tolerable are the infusions?

[LovelyLilyGirl in reply to Canuck901]

My infusions have gone smoothly. I needed IV Benadryl but otherwise, no side effects. And great labs after 3 infusions.

[cllady01 Former Volunteer]

Manzelka, since he is now on second line treatment from first line Ibrutinib, will Rituxan be added?

[81ue in reply to cllady01]

Iris123 reports no side effects from Gazyva infusion. I had Rituxan infusion and unpleasant side effects with the first infusion (nausea, shivering cold, vomiting).

[manzelka in reply to cllady01]

Cllady,

He is just having Venetoclax + antivirals,antibacterials,allopurinol and BP pills.

He had intermittent treatment with cholambicil after diagnosis 14 years ago.

He had FCR which had to be stopped after 2 rounds due to variously bad side effects. One of which was bad nerve damage to his legs which meant any trips outdoors had to be in a wheelchair for a year. Whether it was time or the Ivig infusions that helped with the damage we don’t know.

Then Ibrutinib for 3 and half years which stopped working a few months before Christmas.

[Loveroflife]

Any side effects with the Venetoclax? I’m starting soon.

[manzelka in reply to Loveroflife]

Sometimes constipation sometimes diarrhoea.

He says he doesn’t feel any better but neither does he feel worse.

At least the horrible night sweats went after he started on the venetoclax.

He isn’t getting as many cramps as he used to either.

I hope it goes smoothly for you.

[Loveroflife in reply to manzelka]

Thanks so much for the feedback. Hope he continues to improve!!

[manzelka in reply to Loveroflife]

You are welcome loveroflife.

He did have to have some infusions just before each ramp up but they were saline with potassium and other things. Also another to protect his kidneys. I will have a look for his discharge notes and let you know the name of the drug. I have them filed upstairs.

[Loveroflife in reply to manzelka]

Ok thank you.

[manzelka in reply to Loveroflife]

He was given Rasburicase as an infusion before each ramp up to protect him from tumour lysis. Which fingers crossed seems to have worked.

Take care and let me know how it goes.

[Canuck901]

Excellent news that the results are going in the right direction

[manzelka in reply to Canuck901]

Thank you. 😊

[Naka]

Hi Manzelka,- I've been on Venetoclax for 2 months. All labs are good and within normal range except the WBC and ANC are still extremely low. Been reducing the V weekly from 400 to 300 for a week and now 200. Does your husband have issues with low WBC and/ low ANC?

[manzelka in reply to Naka]

He hasn’t so far, his consultant seems quite pleased with his blood test results.

Is it because of the wbc and anc that your dose is being reduced?

[Naka in reply to manzelka]

Yes he said he wants it a little higher. With it being said he ordered the O infusion(2nd monlthy) to go ahead tomorrow.

[manzelka in reply to Naka]

Sorry for taking so long to reply,I haven’t been on here for a while.

I hope things are ok with you at the moment.