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My Husband's journey with Glioblastoma
Brain Tumor | Last Active: Jun 22 4:12pm | Replies (172)Comment receiving replies
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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Thank you so much for the reply. Yes we are on a nearly parallel path in this fight. My wife did not have any nausea, but lost her appetite entirely. She lost 17 lbs that she did not need to lose during the chemo/radiation phase. She is taking Ondansetron 8 mg for nausea. At the last visit with Onc doc they told her to increase the nausea med to twice or three times per day as they said it may help with her appetite. She has done that for about 5 days even though chemo is over. She also has severe constipation and that has been a vicious cycle since starting the chemo. Hearing your comments, it may be the anti nausea drug contributing to the constipation so we will stop that med in hopes of helping with constipation. She was also on bactrim twice per week to prevent infection and that is now done. She is on lacosamide 50 mg tab 3 in am and 2 in the pm for anti seizure. The seizure doc cut this dose back 20% because he thought it may have contributed to tremors she was having periodically in her right arm. She has not had those for over a week now. She walks fine but is unsteady when she first gets up. She walked 5 miles a day before this started. Her tumor was on her left frontal lobe. The surgery was on July 6. The surgeon did not give a percent of removal, but said he removed everything he could see. Her first MRI is on Oct 17. At this time we have no indication if there is any regrowth of the tumor. She has what she calls brain fog in recalling things, definitely worse than prior to diagnosis. Her attitude has been good overall. For now the concentration is on gaining weight, and lessening fatigue. Our prayers to you and your husband. Please keep us posted on any changes.