My Husband's journey with Glioblastoma

My wife completed the 15th and mid point of radiation today. Temodar for chemo also at the mid point of regimen for her GBM on her left frontal lobe. (surgery was done on July 6) Her tolerance for these treatments was excellent until last week. She began getting more tired and even though her white blood cell and platelet counts are on the low side, they are not significantly below normal range. She has been in a vicious cycle trying to regulate her bowels, evidently a result of the chemo. However, she has not had any nausea. She takes an anti nausea pill each day before chemo pills. Also, last week she began losing her hair in clumps. Finally, her sleep habits have been altered to the point she only gets a decent sleep every third night. On the positive side she is still able to walk 2 to 3 miles nearly each day. Her attitude is positive and she has no other side affects such as headaches. She was having a tremor in her right arm several times per day since surgery, however five days ago those stopped. So I guess another positive sign. Prayers to all those going thru this wicked fight.
Dan

Do the doctors think they caught it in an early stage? My husband was diagnosed April 1 last year and did the chemo and radiation after surgery. They didn't bother to remove the tumors since they just grow back. He could walk maybe 100 feet after the surgery with a lot of therapy but it was struggle. Once the radiation started that just made him get worse quicker. I hope your wife keeps having good results with her treatments. Sadly my husband passed away July 17. I wish you the best.

The doctors won't/ or can't comment on whether this was caught early. The surgeon said he took out virtually all of the tumor he could see. As we look back on some of the minor symptoms she had prior to diagnosis, we surmise this may have been going on at least six months prior to diagnosis in June this year. Very sorry to hear about your husband. How old was he if I may ask? Take care of yourself.

My husband was 76. He had two tumors. They did the surgery to remove them but once they saw it was GBM they didn’t remove any of the tumors because they said they just grow back. They said radiation and chemo would be the only thing that we could try. Radiation just killed him quicker IMO.

I wanted to tell you that the doctors never gave us a time frame on how long he had to live. I knew it wouldn't be too long though since I had noticed for many months that he was having issues. I just never realized why he was having those issues. If you want to talk or have other questions, message me here in the discussion or send a private message. When my husband was dying, I tried multiple times to find people to talk to who were going through the same thing. I never did find anyone. It turned out to be a very lonely journey for me. The hardest part for me now is the loneliness too. We did everything together for 25 years and then he was just gone. It is quite a struggle. I wish you the best.

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

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.

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!!

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.

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!