1. < Brain Tumor

My Husband's journey with Glioblastoma

Posted by otis123 @otis123, Sep 25, 2020

I have been following discussions in this Brain Tumor group for several months and decided it was time to share my husband, Steve's, journey with a GBM diagnosis. On 10/25/2019, after one short week of headaches and some confusion....thinking Tuesday was Friday, starting to take the wrong exit off the highway....I asked him to see a doctor. On Friday, 10/25, he went to the ER where they did a cat scan and found a mass in his brain. An MRI confirmed a right frontal lobe mass. Surgery was performed on 10/28/2019 after which we learned he had Glioblastoma (WHO Grade IV), IDH1-Wildtype with MGMT promoter methylation absent. The surgeon said he had removed the entire tumor, which luckily did not affect any functional areas of the brain. He underwent six weeks of radiation M-F, along with daily Temozolomide chemo pills. He had no adverse reactions to either. Unfortunately, an MRI on 01/24/2020 showed a recurrence. We were told that because his tumor was not methylated, the temozolomide often does not have success. So Steve underwent another surgery on 2/13/2020, where once again the entire tumor was removed. The plan was to start maintenance chemo pills...but still temozolomide. However, swelling in the brain took Steve back to the ER where it was determined he was taken off steroids too quickly. To our shock, an MRI taken on 03/08/2020 showed the tumor had returned yet again!!! We said "no more surgery" as it obviously keeps coming back. It was decided to try the Optune Cap through Novocure and receive every other week treatments of Avastin, a chemo drip. I also heard about a book called "Radical Remission"...How to Beat Cancer Against All Odds, written by Kelly Turner. The best chapter in the book is the one on diet. I learned that "sugar feeds cancer". My shopping now has me reading labels. The book says to avoid anything with added sugars. Don't eat fast food, or processed meats. I buy everything I can find with low sodium or no salt added. We eat lots of fruits and vegetables and only sprouted grain bread. The book also recommended drinking Essiac Tea, which is made of eight organic herbs that are pesticide and chemical free. Check the website http://www.discount-essiac-tea.com to read the multiple testimonials from individuals with cancer. Steve has had MRI's on 06/01/2020 and 09/18/2020 each showing a continual decrease in the tumor size. On 03/08/2020 it measured 5.8 cm x 4.7 cm. On 09/18/2020 it measured 2.3 cm x 1.6 cm. He continues to wear the Optune Cap more than 85% of the time, plus the Avastin, the Essiac Tea, and the diet and lots of prayers from family and friends. We aren't sure exactly what is working so aren't willing to stop anything. We remain cautiously optimistic.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

nauden | @nauden | Nov 3, 2023

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.

REPLY
djw | @djw | Nov 5, 2023
In reply to @vijo "First, GREAT that your wife continues to do well and praying she continues to respond to..." + (show)
@vijo

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.

Jump to this post

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

REPLY
1 reply
ViJo | @vijo | Nov 6, 2023
In reply to @djw "I am so very sorry to hear of the loss of your husband Rick. Thank you..." + (show)
@djw

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

Jump to this post

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

REPLY
djw | @djw | Nov 6, 2023

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

REPLY
kathleen914 | @kathleen914 | Nov 8, 2023
In reply to @amandajro "@nauden, you will see that I have moved your post into an active glioblastoma discussion so..." + (show)
@amandajro

@nauden, you will see that I have moved your post into an active glioblastoma discussion so you can share and connect with others like @heather816 @suez5 @mgreen616 and @suez5 who most recently commented.

Were you a candidate for this treatment due to already being prescribed and antidepressant or is this available more widely to others, do you know?

Jump to this post

I am also excited about this and started 10mg, then 20 mg. now on 40 mg every am.
I love this drug! very alert on it and no side effects so far.
my oncologist and primary felt no reason not to try it.
I wish there was more information, as of no studies i’m aware of.

REPLY
2 replies
kathleen914 | @kathleen914 | Nov 8, 2023
In reply to @kathleen914 "I am also excited about this and started 10mg, then 20 mg. now on 40 mg..." + (show)
@kathleen914

I am also excited about this and started 10mg, then 20 mg. now on 40 mg every am.
I love this drug! very alert on it and no side effects so far.
my oncologist and primary felt no reason not to try it.
I wish there was more information, as of no studies i’m aware of.

Jump to this post

I have never been on an antidepressant, I read an article on Pub Med and asked primary and neurologist to start me on it,it seems successful in mice so……always hopeful. I did the SOC. Temodar and radiation but decided to stop treatment after first round.

REPLY
1 reply
nauden | @nauden | Nov 8, 2023
In reply to @kathleen914 "I am also excited about this and started 10mg, then 20 mg. now on 40 mg..." + (show)
@kathleen914

I am also excited about this and started 10mg, then 20 mg. now on 40 mg every am.
I love this drug! very alert on it and no side effects so far.
my oncologist and primary felt no reason not to try it.
I wish there was more information, as of no studies i’m aware of.

Jump to this post

I am at full dose 60 mg daily and feel good. Here is a study from Stanford
https://scopeblog.stanford.edu/2022/01/05/can-prozac-fight-brain-cancer/
My Mayo oncologist says there is good retrospective data from GBM Further, real-world data from electronic medical records suggested that glioblastoma patients who were prescribed Prozac along with the standard treatment for the disease survived longer.

REPLY
1 reply
djw | @djw | Nov 8, 2023
In reply to @kathleen914 "I have never been on an antidepressant, I read an article on Pub Med and asked..." + (show)
@kathleen914

I have never been on an antidepressant, I read an article on Pub Med and asked primary and neurologist to start me on it,it seems successful in mice so……always hopeful. I did the SOC. Temodar and radiation but decided to stop treatment after first round.

Jump to this post

This result sounds encouraging. May I ask when were you first diagnosed with GBM, and did you have surgery for tumor removal? Was the surgery deemed successful? Finally, when did you complete the SOC? What were your reasons for quitting SOC? I am trying to evaluate your situation for correlation to my wife's GBM.
Thanks,

REPLY
1 reply
djw | @djw | Nov 8, 2023
In reply to @nauden "I am at full dose 60 mg daily and feel good. Here is a study from..." + (show)
@nauden

I am at full dose 60 mg daily and feel good. Here is a study from Stanford
https://scopeblog.stanford.edu/2022/01/05/can-prozac-fight-brain-cancer/
My Mayo oncologist says there is good retrospective data from GBM Further, real-world data from electronic medical records suggested that glioblastoma patients who were prescribed Prozac along with the standard treatment for the disease survived longer.

Jump to this post

I read the article and it does sound encouraging. It does note using the Prozac along with standard treatment though. Are you still taking the standard treatment, and if so at what stage?
My wife is one week post cycle one of the increased Temodar of 5 on and 23 off. It has again resulted in loss of appetite and weight loss. If something such as the Prozac would lengthen the time off from the chemo drug that would be a blessing.
Thanks,

REPLY
1 reply
nauden | @nauden | Nov 9, 2023
In reply to @djw "I read the article and it does sound encouraging. It does note using the Prozac along..." + (show)
@djw

I read the article and it does sound encouraging. It does note using the Prozac along with standard treatment though. Are you still taking the standard treatment, and if so at what stage?
My wife is one week post cycle one of the increased Temodar of 5 on and 23 off. It has again resulted in loss of appetite and weight loss. If something such as the Prozac would lengthen the time off from the chemo drug that would be a blessing.
Thanks,

Jump to this post

I completed final TMZ chemo about a month ago. The only treatment I’m getting is the Optune device. For me the Prozac was a logical addition since I was already taking an antidepressant. So there was only an upside as far as my oncologist and I were concerned.

REPLY
View MoreView Less
Please sign in or register to post a reply.