I’m posting this today to give all Glioblastoma (GBM) patients HOPE!! You must have FAITH and HOPE that God has got you and that he will guide you on this horrific path you will be navigating. I’m the primary caregiver for my husband who has GBM. Here’s the details in our journey so far.
2/13/23 COPD was discovered at the pre surgical pre-op appointment for his March Rotator Cuff Repair surgery and Anoro Ellipta inhaler prescribed. He quit smoking cold turkey after 45 years.
3/6/23 Right shoulder (Rotator Cuff) repaired
6/21/23 Steroid injection in Left hip and Total Hip replacement scheduled for 11/2023
8/12/23 He turned 64 years old
9/22/23 ambulance ride from work to local hospital for confusion and Glucose of 320
9/22/23 ambulance ride from local hospital to better equipped hospital for Neurology tests, put on stroke protocol for 3 days, and Metformin for new Dx of Diabetes II & A1C 6.9 and also Dx with Ascending Aortic Aneurysm at 4.2cm
9/25/23 discharged with diagnosis of Left Temporal Lobe Epilepsy with a brain lesion and prescribed Levetiracetam (Keppra 500mg 2x daily).
10/16/23 pre- op for Total Hip Replacement on left side was approved.
11/6/23 Total Hip Replacement (THR) and physical therapy after the surgery. Keppra upped to 700mg 2x daily.
1/3/24 A1C down to 5.0 he was taken off Metformin; he lost 65 lbs with Metformin & diet changes.
2/8/24 Follow up MRI for Left Temporal Lobe Epilepsy (TLE)
2/9/24 Neurologist phone call to go to ER immediately for brain cancer assessment
2/19/24 Craniotomy and Dx of GBM, was told 12 to 15 months at best, told it was a 100% resection (it was not-it was a sub resection and a chunk of the Walnut out of the shell tumor was left behind).
4/1/24 thru 5/10/24 concurrent radiation with Temozolomide and Lomustine (went on clinical trial for both chemo at same time-42 day cycles). During the 6 weeks of this treatment the left behind chunk of tumor grew to the size of a lime!!
June and July of 2024 he continued to do the chemo (Lomustine & Temozolomide) as we scrambled for our plan B as the tumor was growing!!! He completed only 3 cycles of chemo from April 1st until the last one July 13th 2024. Platelets would plumet on the cycles, but he never needed a Platelet transfusion/infusion.
PLAN B:
8/4/24 he was admitted to UW Health in Madison Wisconsin. He was put on steroids and prepped for 2nd craniotomy for 8/5/24 with one of the best neurosurgeons in the world; Dr. Mustafa Baskaya originally from Turkey. That craniotomy was not only a 100% resection (tumor was lime size) it was a Supra Total Resection! Not only was the tumor completely removed but he went above and beyond all “margins” and removed EVERYTHING SAFELY!! After the craniotomy I took him home on the 3rd day!
8/27/24 he had his post op MRI at UW Health and met his new Neuro-Oncologist and he was entered into a different trial with Selinexor or Temozolomide (Temodar). He was randomly chosen to go on the arm with only Temodar.
9/11/24 started temodar on cycles were every 28 days.
10/4/24 needed 1 unit of platelets.
10/8/24 needed 2 more units of platelets.
12/3/24 MRI showed a conspicuous “spot” in resection cavity. He continued chemo and MRI’s every 8 weeks. We discussed Optune Device and after going over everything with Novocure we passed on that option. It was a quality of life and the side effects that made his decision to pass on it.
4/14/25 was the last and final 28-day round of chemo for him. 6 cycles after 2nd surgery and 3 after 1st surgery. 9 total rounds of chemo and the chemo was stopped to see what the spot would do.
5/18/26 MRI showed no signs of any tumors, no blood supply to that suspicious “spot” and a great MRI review with his neuro-oncologist who said, “YOU are doing great!!”
My husband is in radiographic remission!!! No sign of any tumors on MRI!! The spot is either treatment effect or radiation necrosis!! This August it will be 2 years since he had the 2nd resection (Supra Total Resection) and he is still doing great today!! He has follow-up MRI’s every 10 weeks; end of July is the next MRI. No seizures since 9/22/23. This September it will be 3 years since he’s been dealing with GBM. He still walks on his own with a cane. He has a bone on bone right knee that can’t get replaced so he does have right sided weakness in leg but not drastic and that could be from the knee or the right total hip replacement he had in 2021 or it’s from the GBM. The end of May he had a steroid shot in the knee to help him become more mobile; it didn’t work but we had to try. He did get sick to his stomach when taking Lomustine & Temozolomide at the same time each cycle, but Zofran helped him and he never vomited or had diarrhea issues. Constipation YES but Miralax each morning helped that. He did awesome on Temozolomide alone after the 2nd surgery; except for the 2 platelet infusions he needed within 3 days of each other. He is not on any medications except the 700mg of Keppra 2 times daily and a multi vitamin. The Ascending Aortic Aneurism doesn’t get repaired until it hits 5cm and that is with open heart surgery and that isn’t going to happen, so we pray that that stays at a 4.2cm forever. He only took steroids after his 2 craniotomies and was weaned off them within 10 days. He will be 67 this August 12th! He had just turned 64 the August before the start of this nightmare in September 2023. Remember that when dealing with GBM it’s ONE DAY AT A TIME!!! Keep up with your faith, your hopes, and your prayers because there is power in positivity!!! Do not give up and take each day as a blessing and LIVE LOVE LAUGH!! Here’s my husband’s pathology on his GBM: MGMT Positive (5%) slightly methylated, Wildtype Grade 4. 2 Photos of July 17, 2024 MRI's before 2nd surgery lime size NOT including the inflammation. MRI after 2nd surgery, MRI from December 2024 with the suspicious "spot" and the MRI from May 18, 2026; the enhanced line across the cavity is scar tissue. He does have Aphasia but not severe. A little word mix up? we will take that! he's still here at least!! NEVER GIVE UP!! 🙏
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