Hello all,
I am on my currently progressing thru my maintenance cycles of Temador. The 1st 6 cycles were done with a trial drug, Velibipar.
Now with cycles 7 and 8 of just my 400 mg of Temador, I have had hives break out the day after taking my last pills. Benadryl has helped reduce the welts and itchiness.
Anyone else experience this?
Marc
Hi Marc-
ReplyDeleteSame thing happened w my younger sis w GBM. It was weird as didn't happen in beginning cycles but then did for a Cple and then stopped. It got bad and was all over. They def thought was due to Temodar. Can't remember what gave her exactly but remember was a cream and she took Benadryl. Eventually they stopped. She's still on the 5/23 Temodar and has been since after resection on 12/2014, then chemo radiation and maintenance Temodar for around 15 months now. She's had enhancement since first MRI after chemo rad. Shrunk the littlest bit but not a lot at all. Did PET but still not sure if necrosis or treatment related or tumor. She's getting another PET in a month. She wants to take a break from chemo as lymphocytes just keep going down and she's lost a lot of weight. Makes me nervous w the enhancement. We ll see. I keep getting options and researching. She's at Duke and her primary NO is dr Friedman. He's not very open to many things other than soc though.
Wish u well and keep us posted on the hives. I can find out the cream name if u d like.
15 months is a long time to be on TMZ cycles. This is not without risk, as IDH1-mutated tumors seem especially prone to TMZ-induced hypermutated recurrences. It's a real dilemma, since TMZ also seems to be effective in these tumors (until they develop resistance).
DeleteIf you're at Duke, would be well worth seeing if she's eligible for the CMV-targeted dendritic cell vaccine plus nivolumab trial (in the event of a recurrence), and of course the poliovirus trial.
https://clinicaltrials.gov/ct2/show/NCT02529072