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My Husband's journey with Glioblastoma
Brain Tumor | Last Active: Jun 22 4:12pm | Replies (172)Comment receiving replies
My wife completed her 30th and final radiation today for GBM, and her 42 dose of temodar. The chemo drug really was a challenge the last three weeks. She tolerated it the first couple weeks before it began taking a toll. Her digestive system has been an on going problem, accompanied by fatigue. She has no appetite and consequently lost too much weight. Her sleep patterns were also a mess. She now has 28 days before the next MRI to determine if the treatments were effective. That will determine the next regimen. They have indicated that will be 5 days of chemo and then 23 days off in normal situations for the first couple months. Does that seem consistent with what others have experienced? We are hoping that she can recover some of the lost weight and get back to somewhat normal digestive and sleep patterns while she is off chemo. Any feedback on this is appreciated. May God bless all who have been impacted by this cancer.
Dan
Replies to "My wife completed her 30th and final radiation today for GBM, and her 42 dose of..."
We are on the same timeline as y'all! It is consistent with what our local Onc team is doing as well. My husband (69 yo) just completed 6 weeks of radiation and 45 doses of temodar on 9/21. He did 45 instead of the planned 42 because there were 3 missed days of radiation (sick; clinic closed for hurricane Idalia; labor day holiday) so his Med Onc doctor decided to give him 3 more days to coincide with the last day of radiation. Luckily, he tolerated temodar fairly well; only took anti-nausea med for about 4 days then stopped it due to bad constipation, was able to tolerate it without. Doctor wisely suggested stopping ODT to see if that would help the constipation, and it did! He will be scheduled for his MRI the week of 10/23, no set date yet. (I asked them to wait until after our 33rd anniversary on 10/20.) We already know he has tumor regrowth of the main tumor that was debulked on 6/28 by 70% (MRI 8/22). Our NeuroOnc doc was not convinced all his bad side effects/symptoms were from 2000 mg/day of Keppra he was on for prophylaxis. Understandably, his aphasia is worse some days, and right hand/foot coordination due to tumor regrowth, but the horrible side effects resolved weaning off Keppra, which incl a lot of suicide talk. He had about 2 weeks off from any anti-seizure med and did great, but Neuro started oxcarbazepine 150 mg, 2x/day, on 9/1. He did ok first 2 weeks but side effects are worsening the longer he takes it. Still not as bad as Keppra though!! While we're on treatment break, he is also weaning off of dexamethasone. IF he shows a response on MRI to the temodar (he is positive for MGMT) and radiation, he will start maintenance temodar 5 days out of every 28 at 280 mg, double the dose during radiation.
MANY PRAYERS as we both await the next MRI! AND MANY PRAYERS to ALL who are going through the same battle!!
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Yes....that was the plan for my husband, but he never got to start it as his tumor was visible again when they did the MRI. His tumor was not methylated thought, and that made the difference, as the temodar was not effective. I pray your wife will have a better outcome.