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My Husband's journey with Glioblastoma
Brain Tumor | Last Active: Jun 22 4:12pm | Replies (172)Comment receiving replies
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.
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Oh geeze! about your wife's weight loss, sorry to hear. My husband was prescribed only 4 mg of ondansetron once a day which caused his terrible constipation. Grateful he tolerated the Temodar 140 mg without it!! I can't imagine being on 8 mg 2-3x a day!! Wowzer. There's other stuff she could take to stimulate her appetite that wouldn't constipate her, but I'll refrain from suggesting what :o). My husband continues on his DAILY Bactrim DS - which I think his Med Onc doc said he wants him to continue for about 6 months after chemo is finished :o(. Egads!! I don't agree with taking it like this BUT I'm not a doctor. He is also weaning down off the steroid.
He tried transitioning from Keppra to lacosamide (supposed to be gentler) BUT couldn't tolerate it at all after 2 weeks. We were warned due to his low heart rate, stays around 50-55 (used to run HS track and jog into his 30s) that we knew this could possibly happen, but doctor still couldn't believe he couldn't tolerate it. So, now he's one month in on trying Trileptal, which was going okay until Tues, when he became a zombie even on the lowest dose of 150 mg 2x/day. I cut the daytime dose in half without permission, which has helped! His local neurologist has not responded to my vmail on Wed nor my message I sent via the pt portal!! He is way over sedated, very unsteady on his feet, walks with a walker for safety bc his right foot is affected. He has had two nasty falls while on Trileptal. Appt with Neurology on 10/10 at least.
His main tumor is in his left parietal lobe, your language/learning center, therefore he has aphasia, can read but barely can write, no math skills, and very difficult to process what people are saying. Basically, word salad going on in his head. He had an awake craniotomy but didn't tolerate the anesthesia very well while awake, squirmed around, had to be held down, so they only debulked about 70%. We were told anything between 70-100% is a "good" thing. We're still grateful though! He has a second pea-size tumor "more anteriorly." He has to be "coached" through all his daily tasks because he no longer has the know-how to do anything, but we're grateful he's still talking and walking, although difficult. I am a fulltime caregiver and grateful I am currently able to, but I am checking into Home Health and assisted-living options for the future. His MRI is now scheduled on 10/20, results with Rad Onc on 10/24. We shall keep on keeping on in the meantime. MANY PRAYERS for y'all!