Can Venetoclax be used again if relapse?

[Mav74]

Can someone go back on Venetoclax after the Murano trial? It's been a year and starting to get tired again and sore neck and armpits. Wondering if it's coming back and if so if Venetoclax can be used again? It works well the first time.

Thanks.

Cm

[Oleboyredw-uk]

The answer depends on the angle of your question and the best people to consult are your medical team who look after you.

If you are asking Can I start again after the Murano trial I have no idea.

If you are asking can I restart Venetoclax after a period of time away from it, my understanding is that you can, based on the following. I was on Venetoclax from April 17 until June 18. In my last checkup (July 21) we are seeing rise in my ALC. It has moved from just below normal to just above normal. At the checkup we decided to add an extra checkup to my regime after three months instead of six and the consultant was suggested we consider Venetoclax again maybe next year, depending on results we see over the next consults.

Bit of a woolly answer I'm afraid, whilst I appreciate my comments are just my personal experience and it is best to discuss with your team I hope my comments help.

best to all, rob

[Mav74 in reply to Oleboyredw-uk]

Thank you!!

[lankisterguy Volunteer]

Hi Mav74,

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I did it and it worked for me.

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I started Venetoclax mono therapy in June 2016 after it was approved in the USA -April 2016. I had three MRD-U results by September 2018, and we paused to see how long I would be in remission.

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Unfortunately it was only 4 months until the next MRD test showed 1% CLL cells. So we restarted Venetoclax in January 2019 at full dose with no ramp up, and I was back at MRD-U by the next test 3 months later.

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From mid 2020 until now, my MRD results were very slowly rising from 0.09% to 0.30% but we are sticking with dailyl Venetoclax since it seems to control the CLL cells better than other drugs I've had (see my history here - healthunlocked.com/user/lan... ) . Eventually I expect to add a 2nd drug or switch, but my CLL expert thinks that is still years away.

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Len

[Mav74 in reply to lankisterguy]

Thank you so much for this information. This is really hopeful!

[Mav74 in reply to lankisterguy]

Do you know if Medicare would cover this ?

[lankisterguy Volunteer]

Medicare Parts A&B are fine with most everything in the hospital. -

Venetoclax is under Part D which is a commercial pharmacy insurance and each carrier has its own rules, sometimes your CLL expert may need to intervene if the pharmacy insurance balks at coverage. -

In fact when I started, my insurance refused to cover Venetoclax and my CLL expert contacted Genentech and they have provided the pills at no cost to me for the last 5 years.

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Len

[Mav74 in reply to lankisterguy]

Thank you! That's a huge help and place to start. I can't thank you enough!

[Fran57]

Hello. We are in the U.K., so I know things are different here, but my husband is just about to start Venetoclax and Rituximab ( he had FCR in 2015) and his consultant has just said that he could most likely have it again, if/ when he relapses in the future.I hope that helps.

Stay safe, good luck,

Fran 😷

[CLLerinOz Administrator Volunteer]

Hi Cm

This post has some information that is relevant to your question:

healthunlocked.com/cllsuppo...

I’m not sure how relevant it is to your situation post MURANO. It should give you some questions to ask your health team, though.

[Mav74 in reply to CLLerinOz]

Thank you!

[Korstiaan]

Hi Mav 74,

I participated in the Murano Study as from September 2015, with very good results. When CLL 'returned' in 2019 I got the chance to participate in the extended Murano Study, which I will finish in November 2021. Results of second treatment with Venetoclax/Rituximab are very good again.

Best wishes, Korstiaan

[Mav74 in reply to Korstiaan]

Thank you for that information. I hand heard about an extended Murano study