My Husband's journey with Glioblastoma

Thank you for your reply. Your posts are not too much detail, but are helpful to me. Please do not hesitate to share. Your posts and others like it offer various situations we can be aware of, yet knowing that not all things will be identical. I am recovering from my little bout quite well. Mine was nothing compared to those on this blog.
Anne is now 4 days out from increased chemo that ended last Thursday. I can see a bit of mental processing and mobility decline from that round, but I am hopeful this is a temporary decline. She has no appetite so the few pounds she gained during the chemo holiday are gone and then some. I am somewhat concerned that even these intermittent chemo doses every 4 weeks will have an incremental affect. If anyone else has been through multiple chemo rounds and can provide feedback on that issue I would appreciate it.
Anne's sister and husband are planning to visit us next week for a few days and she is looking forward to that. The following week we are planning to drive 500 miles to see my family for Thanksgiving for a couple days. I am trying to keep life as normal as possible, but we know that all plans are tentative.

I hope you are finding peace and support in your situation. Hopefully you are able to interact with family or friends as well. Everyone on this site is in my prayers.
Dan

OMGoodness about you having gallbladder surgery in the midst of all this and great that your okay!! Your wife must have been terrified. Rick was always fearful something was going to happen to me, his lifeline. Y'all must be worn out from your health scare. Hoping things are a little calmer for both of you now.

Rick had been on oxcarbazepine for a month when he had his seizure. (He could not tolerate lacosamide due to a low heart rate.) They had warned us that his sodium could get low on the medication, to increase salt in his diet. When he had his seizure ALL of his electrolytes were low, particularly the calcium, AND he was also weaning off of dexamethasone at the same time after chemoradiation during his treatment break, before the MRI. He was down to 2 mg, 2x/day, I think, when the seizure happened. So to speak, the perfect storm was going on, according to the ER doctor. The hospital neurologist said weaning off of dexamethasone alone can cause a seizure if there's still a lot of edema. (Hope I have that right.) When the EMTs got to him he was running a fever of 101, BUT I think he was just hot/feverish because he was really laboring to breathe during the seizure. His lips had turned blue, drooling profusely, frothing at the mouth, and his glasses had fogged up, even had condensation on the inside of them. Rick seemed to recover back to baseline before we left the hospital, BUT when we were released home, bladder incontinence started, aphasia worsened, and harder for him to walk. As far as the walking, I thought he was just worn out from the seizure. I will add that I did notice his right arm had tremors off and on since his 6/28 surgery, particularly when he was trying to catnap. and his feet were more restless, right foot would have jerks while sitting in recliner.

I know I may be sharing too many details for some on my posts, and I'm sorry for that, but I just want to let others know what happened for us.
TAKE CARE as well - keep on fighting on!
Vickie

I am so very sorry to hear of the loss of your husband Rick. Thank you for the summary of the final stages. I know that your situation is something I will have to deal with in some manner at sometime in the future with my wife Anne. Please take care of yourself.
Anne completed the five day cycle of increased chemo two days ago. It knocked out what bit of taste and appetite that she was gaining before this last regimen. I have also noticed a bit more brain fog after the latest round. Anne is quite frustrated with that aspect. She does have good mobility though I think even that was impacted slightly during the last dose of chemo. I can tell that this whole process is wearing on her mentally.
Unfortunately, during the middle of her chemo week I went to ER and had a surgery to remove a bad gall bladder. This was not a big deal and I am recovering fine, but it was difficult for Anne to sit around the hospital during a week when she needed every bit of rest she could get. I tried to get her to go home most of the time I was there, but she refused.
May I ask you if Rick was on any anti seizure meds at the time of the seizure he had? Anne has been on lacosomide for seizure prevention since her surgery in July. She has not had any major seizures but, has had several episodes of tremors in her arm on a sporadic basis.
Again, I am so sorry to hear of your loss. I hope that you have a good support system to get you through this stage. You are in my prayers as are all of those going through this difficult journey.
Take Care,
Dan

I’m so sorry for your loss of Rick. Sending you love and hugs. I will continue to fight this damn disease in his honor.

First, GREAT that your wife continues to do well and praying she continues to respond to the chemo!! I'll be cheering y'all and all the other GBM patients on. Please keep me/us posted how y'all are doing. It means a lot.

So...I've delayed responding...because my husband passed away peacefully at home Tues, Oct 24th, at 11:40pm, BUT it took hospice an hour to get to us, so confirmed at 12:40AM on 10/25.

Rick had his first seizure (only one I'm aware of) on 10/2 , spent 3.5 days in the hospital as all his electrolytes were below normal and oxcarbazepine proved too dangerous for him. Thankfully he was safe in his recliner when it happened, so didn't get hurt, but I have no idea how long the seizure lasted bc I was taking a shower. It was quite the electrical disturbance to witness and he was slow coming out of it, so I called an ambulance. An MRI was done during the hospital stay, showing "stable, no tumor progression" and then later said to be "slight decrease." We were relieved and had plans to start next chemo cycle on 10/19. When he was released from the hospital on 10/5, he did require more caregiving bc loss of bladder control started much to our dismay, requiring pullups, and his aphasia worsened. He did okay until Wed, Oct 18th, when he stayed in bed all day (daytime caregiver's 2nd day), and I'm thinking due to all the med changes, etc. But I called for an ambulance about 5pm because he was refusing my help and a bit argumentative, thinking he may have a UTI. BUT all labs, urine checked okay; doctor said this was "the glio." He had two agitated episodes in the ER before they finally gave him some Ativan. The doctor asked 2x if Rick was already on hospice, but hinting really. She said she didn't have a valid reason to admit him, so sent us home via EMTs, with a Rx for Ativan q4h and said she'd pray for us. I totally understood, knew this was my sign...So on 10/19 I called Oncology and told them we're stopping treatment, let's start hospice instead. Fri morning, 10/20, on our 33rd anniversary, I enrolled Rick in hospice. And by Tues, 10/24, 11:40pm he passed peacefully. I had no nighttime caregiver from that Wed-Sun!! Called a neighbor a few times in the middle of the night for help. Nighttime caregiver started Mon 10/23, thank goodness! The home care service and hospice were scrambling to keep up with the rapid pace of Rick's decline. Rick took the fast lane, thankfully, once I set him free, he's suffering no longer. I tell you all of this because I want every GBM family to know how it played out for us.

We discussed early on, and somewhat often, what to do when the time came, so it was not a difficult decision for me to call hospice, just wish I had recognized it at least a week sooner! Also know, I scheduled appts with three Assisted Living facilities that I had to keep bumping since last week of Sept, but the GBM train steamrolled right over me! I had even put a deposit down (refundable) at one facility on 10/18!!

Again, calling hospice was not a difficult decision for me because Rick's main tumor was in his language/learning center and he was literally trapped in his head, word salad for him. The torture in his eyes became unbearable. He had lost the know-how to do most everything, which included instructing him how to get room to room on his walker...so there was no quality of life for him.

BUT PLEASE...y'all continue to fight! Kick some arse!! I will continue to pray for everyone in this battle.

Thank you. How are you doing? What is your current regimen?

How did the latest MRI go, and what is the treatment plan going forward? My wife had her first post radiation, chemo MRI on Oct 18. We were relieved with the finding of "no obvious tumor progression". We met with the oncologist on 10-19 and she will go on the 5 days of 220 mg temodar and 23 days off for the first two cycles. After this and the next MRI they want to increase the temodar to 300 mg doses. MRI,s every other month for a year with chemo cycles on going during that time. My wife, Anne, still has relatively good mobility although she loses her balance from time to time as today when she fell in a parking lot, but is ok. She has brain fog that the oncologist said may lessen as she gets to 90 days removed from radiation. While she has been on the chemo holiday of about 4 weeks she actually started eating a bit more and has enjoyed some meals. Her sleep is also better. About three weeks ago she developed a pain in her neck, (not me) which she attributed to sleeping on it wrong. She has used over the counter meds and now has an rx muscle relaxer that helps moderately. Her attitude continues to be good. Prayers with you and all of those in this situation now or in the past.
Dan

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!

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.

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!!