Mayo Clinic Connect
Any personal stories about side effects of Temodar especially when taking it as maintenance? Does it get worse each month as you go? Needing to know what to watch for.
I’m tagging a few other members, like @myminnie @spangles @chuck58201 @kansastumor @martyc2016 @caquigg1 and @dawn_giacabazi, who have experience with Temodar (temozolomide).
Imp, have you noticed any side effects yet? When did you start taking it?
My husband has taken the generic form, Temozolomide. He had to add a second type of anti-nausea medication. His nurse also recommended he add an earlier dose of the anti-nausea medication. Aside from that he takes marathon naps for the tired time of the cycle – about 4 days. One surprising discovery we found is that his oral antibiotic, Bactrim, made him feel sick to his stomach. He now does a once a month Bactrim nebulizer treatment at the clinic in pulmonology, which works great! Tip: take something to read or headphones in the little tent if you ever go that route. He says it is a boring 20 minutes!
Liked by Colleen Young, Connect Director
My husband was 40 days on Temodar during brain radiation and then 12 cycles /2016/.astrocytoma grade II bithalamic, inoperable .
No side effects,just feeling tired and sleepy after each cycle.He took it very well.
After a year of some sort of peace,now the tumor is growing.He is on temodar again,cycle 1,for a second time.Hope it works.
Welcome to Connect. I'm sure this is a stressful time, and I'm so glad that you've joined this group.
I'm tagging additional members @spangles @caquigg1 @myminnie @chuck58201 @kansastumor @martyc2016 and @dawn_giacabazi who have had experience with Temodar (temozolomide). Hopefully they will also join the conversation.
You might also wish to view these discussions on Connect, where many members have shared their insights and information about managing astrocytomas:
– astrocytoma in cerebellum, need advice https://connect.mayoclinic.org/discussion/astrocytoma-in-cerebellum-need-advice/
– Inoperable Brain Tumor https://connect.mayoclinic.org/discussion/inoperable-brain-tumor/
– Recently dx with Anaplastic Astroctyoma – was your treatment successful https://connect.mayoclinic.org/discussion/recently-dx-with-anaplastic-astroctyoma-was-your-treament-successful/
We look forward to getting to know you, and hear more about your husband's progress, @dessi73.
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