4 posts shown.
ruggedgardener74 said:I spent about four hours scrolling through this Reddit thread yesterday... just needing to know that my mom and I aren't alone in dealing with my dad's illness. We're at 14 months with glioblastoma, and things took a sharp turn two months ago. No matter how much you hope or pray, the disease follows its own logic. I admire all of you; regardless of how things end for your loved ones, you are all heroes in your own stories. It breaks my heart that anyone in this world has to go through what we're going through. Thank you all for providing even a small amount of comfort during these hard times.
Dear ruggedgardener74, I completely understand you.
This place has been both a source of comfort and information for me, too. Ever since my mom was diagnosed with glioblastoma, I’ve been scouring these pages looking for any way to help her. During those last two months of her life, it wasn't really my mother anymore—it was like a different personality had taken over her body. Beyond the helplessness of not being able to fix anything, the hardest part was when I stood by her bed and she wouldn't recognize me, or if I stood on her left side and she simply couldn't see me. That was devastating. She would have these intense fits of laughter—the kind where you can't help but smile seeing her laugh, but then the moment I leave the room, I break down because I realize that laughter isn't conscious; it's just the tumor.
She passed away eleven months ago, just the way she wanted—peacefully in her sleep without pain. She was 60, and I miss her more every day...
My sincere condolences to everyone who has lost loved ones, and my heart goes out to those currently fighting these brutal diseases.
Apologies in advance for the long post.
On February 12, 2020, my mother received a pathology report confirming Glioblastoma Multiforme Grade IV, wild type.
She underwent two surgeries at Johns Hopkins Hospital. The first was on February 5, 2020. A follow-up MRI four weeks later showed total tumor progression. She had a second surgery on March 30, 2020. Following that, she underwent 30 consecutive radiation sessions combined with Temodal 120 mg over a total of 42 days. There was absolutely no response to the therapy. An MRI two months after the last radiation session showed even greater progression. Both the neurosurgeon and she decided to stop further surgeries and stick to oncological treatment.
At the end of the ninth month, she started the PCV protocol. There isn't much written about this specific protocol online.
Angela Wright, thank you for the information.
The PCV protocol: Day 1 involves three 40mg CCNU tablets. Seven days later, there is a Vincristine infusion, followed by 10 days of taking Natulan tablets. Seven days after the last tablet, there is another Vincristine infusion.
The plan was for four cycles.
Before each part of a cycle, she had to have her CBC and differential checked. Results had to be stable for her to proceed with the next stage.
One cycle lasts one month.
After the second cycle, another brain MRI showed even more significant tumor progression.
During the second half of the third cycle, my mother decided to stop all further treatment.
Since stopping therapy, she takes Dexamethasone 4 mg, Lercanil 10mg, Acipan 40 mg, Diazepam 5mg, Lamal 25mg, and Glucophage 850 mg.
Since the beginning, she has been taking Noni, raw propolis, and turmeric.
For pain management, she used Advil 600mg for a long time, then moved up to Advil 800 SR.
Over the last two weeks, the disease has progressed rapidly. We have moved her into a care facility because I can no longer provide the level of intensive care she requires.
Currently, only her right arm remains mobile.
She has been aware of her diagnosis from the very start.
I am with her almost every day, and every day things get worse. The disease is advancing relentlessly.
It is incredibly difficult to watch her slowly slip away.
For pain, she is now on Matrifen 50 patches, Oxigerolan 20mg tablets, and Dronabinol oil drops.
Today, I’m going to try to reach an anesthesiologist through the pain clinic to adjust her medication. We can barely touch her; she says everything hurts.
Nicole Jackson4 said:Hello, how old is your mother?
My mom also has the wild type... It recurs quickly, too. I'm afraid we'll be facing that protocol soon ourselves, so I'd like to know more about it as well.
From what I've heard, glioblastoma is unfortunately even more aggressive in younger people... That's why I'm asking about her age.
Good luck to you.
Thanks, Nicole Jackson4.
Mom just turned 60.
It all moves incredibly fast. We understand the diagnosis, but it's just hard.
Since her first hospital stay, she's been taking noni and raw propolis; she started using them while still inpatient. Because of that, she's handled the radiation and chemo quite well, and her blood counts have remained consistently good.
Good luck to you, too.
I'm hoping someone will chime in with information regarding that PCV protocol.
Hey everyone.
I've started reading the first part, but I just can't seem to find the time.
My mother was diagnosed with confirmed Grade IV IDH-negative glioblastoma (wild type) back in February. She underwent surgery at Rebro Hospital, but a follow-up brain MRI just one month after the procedure shows tumor progression.
Had a second surgery in March. One month after that, started oncology treatment combining radiation and Temodal—totaling 30 sessions at Osijek University Hospital.
The recommendation came in: get a brain MRI eight weeks after the last radiation session. The results show tumor progression. The neurosurgeon thinks surgery is an option, but there's a catch—it has spread to a position where operating would leave her paralyzed and unable to speak. Because of that, both she and the neurosurgeon have decided against a third surgery. It’s a tough call, but they've made their peace with it.
The oncologist just finalized the PCV protocol.
Does anyone have any insight on this? Has anyone here actually gone through this specific protocol before?
I can't seem to find much useful info online.
Her doctor was blunt with me. She admitted she'd never seen anything like this before and had absolutely nothing to tell me.
Thanks, everyone.
Sorry for the long post.