Posts by steelpilot62

Hey everyone, we just got the green light for 6 more cycles of Temodal. So far, my husband has handled everything pretty well and the tumor has shrunk quite a bit, though according to the doctors, it’s still too large to go under the knife. Has anyone here dealt with such a long stretch of chemotherapy? He’s already been on chemo for almost 8 months (plus some radiation), so I’m genuinely worried about how he’ll hold up through these next 6 rounds. Thanks in advance... cheers

Angela Wright said:Kudos to you, but honestly, I’d much prefer if the founders were just regular people—family members who aren't professionals. Wishing you tons of success with everything.

Basically, this association was "born" because of a medical technician whose husband passed away from glioblastoma. She's the driving force behind the group. Since we're all out here fighting this glioblastoma fate—because let's be real, it's more of a destiny than a diagnosis—it would be an absolute honor to get involved and help out. I want to see as many people join us as possible so we can share our experiences, fears, hopes, struggles, and ways to cope. We already do that here on this forum, but why not take it a step further and have actual professionals by our side? And the professionals will bring their expertise to the table too. Maybe it's actually better to have it run through the pros. After all, they are the institutions. Our oncologists, Prof. Santek and Dr. Loncar, are actively involved (or will be) in supporting this young organization. Either way, having that kind of professional insight isn't a bad thing. Best of luck to everyone.

Hey everyone, a new association just got formed (I think it might even be the first one?) specifically for people dealing with brain tumors. Here’s the link:
I couldn't make it to the first meeting, but I'm definitely going to the next one.

Hey everyone, I just had to share some good news with you all. My MRI shows the glio has shrunk from 5.5 cm down to 2.3 cm. 🎉🎉

Angela Wright said:Have you guys heard about Dr. Zhivkov? This fake doctor is peddling hemp oil out of Marica’s hair salon and scamming people who are seriously ill.
Stay sharp, because these types are everywhere. Always double-check everything and don't go taking anything on your own without talking to a real doctor first.

The absolute worst kind of people—if you can even call them that! And any actual physician would flat-out reject any attempt at "treatment" using that oil.

Honestly, as if having incredibly sick family members or fighting a tumor ourselves wasn't enough, the system goes out of its way to make things harder. On paper, everyone has rights, but the second you try to actually use them, you hit a brick wall. Here’s a quick summary of my two-week nightmare: My oncologist issued a D1 referral for continued Temodal monotherapy, which covers all the diagnostic tests the doctor orders and stays valid for 365 days from the issue date. Per Medicare rules, the hospital is supposed to provide internal referrals for specific tests. The headache started when I arranged an MRI for my husband at the Neuron clinic (which has a contract with the KBC). I went back to the primary oncology office, and they told me they couldn't issue the red referral; instead, they sent me to the chemo and radiation outpatient clinic at Rebro. When I got there, they claimed they don't handle referrals for expensive scans—they only deal with the "small stuff" like basic labs. In desperation, I called Medicare to beg for help because we have an MRI scheduled and nobody will release the referral! Finally, I reached a coordinator who sent an official memo to the KBC demanding they urgently issue the internal referral for this necessary scan. All this new patient routing was supposed to help us, the patients, but it just complicated our lives. I finally got the referral with a note from the oncologist... "Dear and respected Ms. XXX, congratulations on your persistence." So, just so you know for the future: if you have D1 or D2 referrals, the facility treating you MUST give you the internal referrals needed for scheduling. That referral expires once the discharge papers are signed. For any follow-up checks after discharge, the patient needs a red referral written by the primary oncologist.

We’ve got an MRI scheduled in a week. Fingers crossed that the tumors have shrunk at least a little, or better yet, completely vanished! Question: if by some chance the radiation and Temodal don't work—or if they only work a tiny bit—do they just keep going with Temodal monotherapy? I'm terrified they might take away our only lifeline... because he actually handles it really well. Thanks in advance!

Angela Wright said:I think it’s possible, especially if they're swollen from the dex. Ibuprofen might help; some massage gels have it (I think Deep Relief does). For my mom, we arranged a visit from a physiatrist who set up her home therapy. It helped a ton because the physical therapist would come by to massage her and go through passive exercises. Also, when joints get swollen like that, keeping arms and legs elevated really helps.
Get home health services and ask the Doctor to run a blood panel and liver function tests just to rule out any liver issues.

In my opinion, one silver lining with brain tumors is that most people aren't fully aware of their condition. My mom, for instance, was convinced she could make it to the bathroom all by herself. If I wasn't watching her constantly, she’d try to go alone and end up collapsing somewhere in the house. I’d have to call my husband to rush home from work just to help me pick her up—it was an impossible task for me alone. It was the same deal with her medication. She’d take a handful of dex and two Phenobarbital pills a day. At one point, I actually had to stop her from swallowing a massive pile of Phenobarbital all at once. To her, it all felt the same. I think her awareness was partially there... it really just depends on which part of the brain is affected.
Oh my God, just thinking about it gives me that heavy knot in my stomach again. 😢

Oh, thank you so much for reaching out! (If we can talk privately). I've been using Deep Relief, and it helped him a little. We're doing both tablets and Phenobarbital (as a preventative). My husband knows exactly how many pills he takes; if I accidentally slip him a sedative because he's being so restless, he'll throw it straight in the trash immediately because it messes with his routine. So, I end up crushing it into juice or yogurt. Did your mom actually manage to sleep through the night? We are struggling so much with sleep; he just can't do it. He was recently at the Rib and got some sleeping pills, so we'll see. Every time I complain to the doctors, they just tell me it's part of the disease process...😢

Elizabeth Fisher13 said:The worst time for our family was when my mother-in-law was diagnosed with the exact same tumor as your husband. She had surgery back in February, went through radiation and chemo, and she’s starting her third cycle of Temodal in a few days. It’s... a lot. It isn't life-threateningly bad, thank God, but it isn't great either. Physically, she might be holding up, but mentally? She’s completely fallen apart. She's jumpy, tearful, and stuck in this loop of self-pity. That phobia, that constant fear—it just won't let go. She's afraid to drive, afraid to be alone, afraid of blood tests, afraid of the treatment, afraid for us... It’s draining us all. She’s on Xanax regularly, and we give her all the support we can; we try to keep things positive. I totally get where she's coming from. GBM is a brutal tumor, and she doesn't even know the true prognosis. When she breaks down mentally, it hits everyone. We haven't been able to function normally for a year now because from last September until February, we were bouncing from clinic to clinic, only to have doctors look at us blankly and say, "She's fine." We're just taking it day by day. Some days are better than others. I pray to God there are more "good" days ahead. I truly hope your husband hits some better stretches during this illness. Hang in there!

Man, hang in there. Honestly, I don't know how much they actually realize about their own condition, but wouldn't it be easier if they didn't know at all? Life would be simpler. For us, it's just pure exhaustion.

Hey everyone, his joints have started hurting incredibly badly. Yesterday, he couldn't even stand up. Is this happening because of the illness, the dexamethasone, or something else entirely? Could it be his liver? I’m losing my mind here—I don't know how to help him when he refuses everything. He won't take any painkillers. Has anyone dealt with this before?

Hey everyone, we had the vision exam today, and unfortunately, the damage is permanent. We’re at the stage where he’s lost his sight entirely. Tomorrow we have to head to psychiatry because he’s incredibly hyperactive and hasn't slept a wink. I'm worried about everything—especially the kids—and I'm already thinking about seeking out some psychological help. Alma, thanks for the support. Honestly, I don't even know what else is coming our way. I just hope we all find the strength to get through this together. Alma, thank you again. Just stay brave, guys; take it one battle at a time. I still hold onto hope that things will turn out okay, no matter how grim the prognosis or diagnosis looks. For those asking, we are being treated at the Mayo Clinic by Professor Santek, who is truly a wonderful man. Best to all.

Hi everyone. Unfortunately, here I am on this forum too. I’ve been lurking for a long time, but it took me five months to finally find the strength and the time to actually join the conversation. My husband is 42, and he was diagnosed with glioblastoma. Our nightmare started back on May 13th, 2014, when the diagnosis hit. Before that, he didn't have a single physical issue. Since that moment, he basically turned into a vegetable—stuck in diapers and facing zero hope for survival. His condition did improve slightly after stereotactic surgery, and we’re incredibly grateful to Professor Chudy at the New Hospital for that. The tumor was already too far gone for surgery to even be an option (about 12 cm in the frontal lobe). He was rushed straight into radiation and Temodal therapy. Around mid-July, things started looking up. He began communicating much better, stopped needing diapers, and is doing significantly better both physically and mentally. That’s a huge relief considering they initially gave us maybe a month to live. We are currently in the first cycle of Temodal monotherapy, and I have to say, he’s handling it well. But now, new struggles are cropping up: vision loss and massive, sudden personality shifts. My husband is naturally a quiet guy, but now he talks incessantly. He’s extremely nervous and, frankly, just mentally exhausting me. I know it’s all a byproduct of the disease, but I really need to hear about your experiences and draw some strength from you all. I’m hoping Angela Wright might reach out, because I literally devour her posts. Wishing you all the best. P.S. I’m new here and still figuring out how this forum works, so please bear with me if I mess something up.