Brother about to start treatment, advice please

[EricSun]

My brother was diagnosed with CLL just over 2 years ago. He’s about to start treatment with obinutuzumab and venetoclax. He’s on a few meds for blood pressure and several medications for epilepsy. Wondering if anyone has done this treatment who also has epilepsy and how the treatment went? He’s pretty anxious about it all.

[LeoPa]

Hi Eric, have you heard about epilepsy management with a zero carb diet without drugs? And it helps with blood pressure too.

epilepsy.com/treatment/diet...

allthingscarnivore.com/is-t...

Just a pointer to investigate further and talk to a doctor before radical dietary change.

[Ptown]

Hello EricSun, A warm welcome to you and your brother. Our community is populated with people who are in all stages of CLL, each on their own journey and willing to help each other out with advice and support and even a place to vent, when needed.

There are many pinned posts that can help you and your brother build your knowledge base. We all get the fact that being diagnosed with cancer is a shock to the system and requires learning a whole new set of scientific concepts and vocabulary. It is wonderful that you are helping your brother find answers.

Please come to us anytime. Hopefully someone has a similar experience with epilepsy medications to share.

Sending support! Carolyn

[lankisterguy Volunteer]

HI EricSun,

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Here is a link to the 8 times that Epilepsy was mentioned in past postings- I hope you find some of the replies helpful.

healthunlocked.com/cllsuppo...

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Your brother's CLL expert and pharmacist will need to check on any drug-drug interactions with all his prescription and OTC (Over The Counter) medications. Venetoclax has some concentration complications with several drugs, typically Blood Pressure meds. An experienced expert may be able to adjust the doses to minimize side effects.

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I see you joined us yesterday, and hope you and your brother are getting advice from a CLL expert doctor, as we all should, but with his complications it is very important to have guidance from a doctor who sees only CLL patients- like this list:

cllsociety.org/newly-diagno...

alternatively if you are in the USA, your brother can get a free consult by video from home with a recognized CLL expert here:

cllsociety.org/programs-and...

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Len

[Astro617]

I hope all goes well for your brother. It's understandable that he'd be feeling anxious. In addition to making sure the oncology group and the pharmacist check his medicines for interactions, I'd also check with the neurologist. And if he wants to do some personal sleuthing (maybe he'll find something to ease his mind?) you can put your meds into an interaction checker here: drugs.com/drug_interactions...