Is anyone taking IDH Inhibitors, like Tibsovo (ivosidenib)?

Posted by jeanneoc @jeanneoc, Feb 20 11:10am

Three months out from craniotomy and it's recommended I try tibsovo, as the newer IDH inhibitor (ivosidenib) tanked my neutrophils and had to come off it. Does anybody have experience taking this?
Seems counterintuitive to take a medication to heal that can harm your bone marrow and or heart - i need monthly EKGs on this pill.
Suggestions?
Thank you!!❣️

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Colleen Young, Connect Director | @colleenyoung | Mar 3 2:15pm

@jeanneoc, Tibsovo (ivosidenib) is a IDH1 inhibitor. It is typically used to treat acute myeloid leukemia (AML), cholangiocarcinoma (bile duct cancer), or myelodysplastic syndromes (MDS) in patients who have an isocitrate dehydrogenase-1 (IDH1) mutation in their cancer cells.
https://www.mayoclinic.org/drugs-supplements/ivosidenib-oral-route/description/drg-20443890
Has this medication been recommended to treat your glioma?

jeanneoc | @jeanneoc | Mar 3 3:03pm

In reply to @colleenyoung "@jeanneoc, Tibsovo (ivosidenib) is a IDH1 inhibitor. It is typically used to treat acute myeloid leukemia..." + (show)

@colleenyoung
Yes, Ive already had radiation and chemo
Also tried Voranigo
Craniotomy was in Nov
so since Im IDH+ dr recommended- thanks for asking

jeanneoc | @jeanneoc | Mar 18 9:20am

Just curious if anyone out there w glioma that is IDH+ is taking Tibsovo?? Also called Ivosidenib. Im starting today per my oncologist at Mayo. Have already tried Voranigo/Vorasidenib but had to discontinue due to neutropenia. Any tips for taking this older IDH inhibitor would be greatly appreciated! Good luck to all of us on our brain tumor journey- Im 16 yrs out from original chemo and radiation and had craniotomy four months ago. Thanks🙏

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