Posts by Angela Wright

THANKS TO ALL OF YOU

My dad just got back from taking Mom to see Dr. Paladin for her MRI results to figure out our next move. We were really hoping he could drain that built-up fluid again—just thinking it might give her a little bit of relief. But honestly? The doctor told us the fluid isn't even the main issue anymore. The tumor has progressed way too far; it’s already moved into the brainstem and the other hemisphere. I had this sinking feeling deep down, and logically, everything pointed to this, but hearing it out loud... it absolutely gutted me. I'm just sitting here crying, feeling completely lost and helpless when all I want to do is fix this for her. It feels like my hope is just slowly flickering out, and she’s the last one left. Oh, Mom, we had so much more life left to live together.🙂proklet sudbina

Grace Fowler said:Finally back home. I just finished my sixteenth round of the fourth cycle. Honestly, I feel like half a person right now, but being home makes a massive difference, so I'm hanging in there. :-))
Thanks for all the support, everyone... Grace

Hang in there, girl! Things are going to get better.👍

Melissa Kim45 said:At the end of the day, we're really just fighting our own battles.

Honestly, what you just said is the absolute truth, and I couldn't agree more.😳

Just keep doing your thing.👍

Anonymous said:The pathology report just came back, and it was a primary tumor (which they managed to remove). The doctors in Washington, D.C. (where the tumor was located) say we need to start Temodal therapy at 250 mg. If anyone knows where I can get my hands on it or can tell me more about the medication, please let me know.

Yeah, in the US, it isn't on the standard approved list yet👎. When we were sourcing this for my mom, the cheapest option turned out to be in Mexico, then Canada, where we finally tracked it down (in a small town in the US); there wasn't much of a price difference there. Here in America, the cost is roughly the same as in Mexico, running about $1,300-$1,500 per dose. Try looking in Mexico first. Your best bet is to call pharmacies in towns right near the border so you don't run into a language barrier.
I truly, deeply hope you can manage the financial hit, because those two doses we had to buy absolutely wiped us out—we almost went under trying to afford them😠. Luckily, it was added to the approved list in the meantime.
Do you happen to have American citizenship or insurance? That would make things a whole lot easier.

brightgardener8 said:Angela Wright, have you heard anything from the other forum members who weighed in on that glioblastoma thread (sismis, vpavi16,hal 9000,leny)? I've been catching up on all their posts. It looks like only lilac and Bednarczyk have checked in recently.
Best regards!

Vpavi reached out to me privately; her partner lost his battle just a month ago. I expect she'll post eventually, but she’s clearly going through hell right now and needs space to process everything. Lilac also messaged me this morning with some heartbreaking news. On a slightly more hopeful note, Bednarczyk’s partner is holding steady—she's nearing the end of her chemo, stays active by walking a lot, and they're doing everything possible to maintain a healthy lifestyle. As for the others, I'm in the dark.

I honestly feel compelled to tell you all that these three individuals possess a level of nobility and warmth that is rare to find. They are incredibly resilient. It often strikes me that perhaps God reserves these kinds of crushing trials for people exactly like them, because anyone else would simply shatter under the weight of it. Beyond them, there was another woman whose seventeen-year-old son sent me a private message, desperate for any shred of hope regarding his father. He didn't post publicly on the forum. Both the boy and his mother attended our meetup. Sadly, their father passed away in record time, becoming yet another victim of glioblastoma. To make matters even more devastating, just a week or two after losing his dad, the boy ended up hospitalized with a cough and respiratory issues, only for doctors to find some kind of malignant lung tumor... it's a heartbreaking situation for such a young kid, and I can't even imagine what his mother is enduring, though she is remarkably strong and refuses to break.

I am truly grateful to God that I had the chance to meet these people. In a world filled with fake heroes and twisted morals, I've encountered real warriors and genuine souls. For me, it has been a profound honor.

Amanda Williams64 said:Honestly, people, the stupidity is endless! Mom is continuing her treatments at home, which makes sense. That means Monday through Friday we’re heading to the hospital for radiation and taking Temodale plus dexamethasone, and then on weekends, we hit the urgent care clinic just for her dexamethasone injection. We haven't said a single word to Mom about her prognosis regarding this glioblastoma. Once she starts asking "too many questions," my sister and I do our best to dodge the issue—we play it vague, avoid direct answers, and try our hardest to comfort her and keep her fighting spirit up. Basically, we’re doing everything in our power to downplay how serious this actually is.
Then we walk into the clinic and some idiot nurse or doctor lets slip that Mom actually has a "benign" tumor and that everything is going to be fine. Naturally, Mom is overjoyed. She’s full of hope now. Honestly, if I didn't pass out right then and there, I almost did. I can handle support and encouragement, but this? Now I’m starting to wonder if I’m the one who's losing it.
First, we get blindsided at the hospital by the surgeon, who makes it crystal clear—without being subtle at all—that this disease is incurable and that we’re looking at a fight just to extend life to maybe 18 months. We spend days struggling to even process that information, and then we hear the tumor is "benign." Of course, nobody would be happier if that were actually true, but this...
Best to everyone!

Just let her stay in that belief😳. My mom and I went through the exact same battle, and looking back, I realize we wasted an insane amount of energy on it, because in the end, she figured out what was really happening anyway. You don't need to be a neurosurgeon to eventually realize that if you're undergoing radiation and chemo, you're dealing with a malignant tumor.
It is what it is; she’s getting treatment and everything is in God's hands... I think it’s best to look at things that way and not overthink or argue about it, because once the wheels start falling off, they fall fast...👎

This lie from the medical staff is completely unprofessional and deserves condemnation, even if it was likely intended with good intentions 🙄 (with cancer, the road to hell is paved with good intentions). If you can't tell the truth, there's a way to remain silent or phrase things so the patient isn't crushed by it, but that's another failure of the American healthcare system, where they teach medicine from textbooks rather than out in the field among real people 😠. Learning how to deliver bad news should be a mandatory subject in medical school.

Even though I keep seeing news about people passing away from glioma, I still deeply believe it's possible to somehow beat this disease, and you have to remain persistent in the fight, because who knows, maybe your mom will be the one to beat it.
The quality of care—both physical and psychological—is incredibly important, perhaps even vital. Pamper her and take care of her, but don't smother her. Let the woman live as peacefully as she can and enjoy her time with her family.

When I was just a little girl, my mom used to put sliced tomato compresses on me overnight, and by morning, I’d find these tiny needles just sitting right there on the floor where they had worked their way out.

Grace Fowler said:Hey there!
Look, the PSA test is originally a tumor marker linked to ovarian cancer, but since no single marker is ever 100% specific, you can't rely on it blindly to determine its diagnostic power. A PSA test can spike due to all sorts of things involving the ovaries, uterus, or just general abdominal inflammation or stomach issues. From what I've seen in practice, doctors mostly use it as one data point to track how a diagnosed disease is progressing over time. Don't let this number get in your head too much.
Keeping my fingers crossed for you and sending a million rays of sunshine...

So, I just did some digging online, and it looks like those other two markers are actually way more significant than the PSA test—and since yours came back negative, that’s absolutely fantastic news!
http://jjco.oxfordjournals.org/cgi/c...full/29/11/550

Linda Campbell said:HEY EVERYONE, HELLO TO ALL THE FIGHTERS OUT THERE!

Does anyone actually know what they're talking about when it comes to tumor markers?
My mom just got her labs back; her blood work looks fine overall, but one specific tumor marker is eating at me. Here are the numbers: CEA 1.9 (normal), CA 19-9 3.73 (normal), but the PSA test is 96.4—way up, considering normal is under 35. She had this done after her first round of chemo, and she’s scheduled for the second cycle next week. She’s fighting stomach cancer following major surgery. If anyone here actually knows their stuff, please weigh in.

That PSA test is typically used as a marker for ovarian cancer cells. However, it often spikes due to endometriosis (those endometrial cysts on the ovaries), and those levels can skyrocket—I have endometriosis myself and my levels jumped past 135! It’s common for it to be elevated in women of childbearing age, regardless of whether there's an actual issue or not. Honestly, it isn't the most reliable indicator on its own; it’s more like a red flag that tells doctors they need to dig deeper with more tests. Your mom should probably head to a gynecologist for an ultrasound just to put your mind at ease. It might be nothing at all—she could have been carrying a chocolate cyst for years without ever knowing. Besides, if I remember correctly, it can also indicate various growths within the abdominal cavity (since your mom is dealing with stomach cancer), so in that context, this number isn't even that extreme compared to my own marker which was massive despite my condition being benign.
I really think things are looking up for your mom.

I have a buddy in San Francisco whose dad battled stomach cancer five years ago. He went through surgery, almost died, finished his chemo, and look at him now: alive, healthy, hitting the docks every weekend for fishing, and built like a tank at over 220 pounds.
She’s going to be fine, don't sweat it!😘

Carol Ramirez said:I'm also here to 🙂
Angela Wright, I’m really glad you and your dad have finally buried the hatchet—I truly hope things stay peaceful between you two moving forward.

That said, I do have a question.

Like I mentioned before, my grandfather is dealing with lung cancer. He’s already gone through six rounds of chemo, and now he’s waiting to face the oncology board to decide on the next steps. One requirement for that review is a bone scan. We’ve already had the test done, but I’m anxiously waiting for someone to sit down and explain what the results actually mean, so I’m hoping for a little insight here.
Can a bone scan actually detect skeletal metastases?

Here is the report:
The bone scan shows an area of increased radiopharmaceutical uptake in the midsection involving four lumbar vertebrae and the central portion of the manubrium near the xiphoid process of the sternum. The rest of the skeleton shows normal physiological distribution of the radiopharmaceutical.

Best to everyone!! 😘

Honestly, I think the admin, ante dumbledore, might be the one to ask, or maybe sarkom, though I haven't seen him around lately. I have to admit, I’m pretty worried😳. Send him a private message and ask him to post the answer publicly here, since I can't be sure if he actually reads every single thread.

Here I am...
The fight continues, everyone, I can see that.👍
To those girls currently going through chemo—you know how it goes—just go out there and kill it.🙂

Things have calmed down a bit on my end. My husband finally realized he can't deal with my mom any other way than having me right here by her side. I went on strike for two weeks, and once he got back from his vacation😁 👍, he finally caught on that this wasn't working.
The result: A little extra cash in my pocket, a massive ache in my back, eczema breaking out on my hands, a messy house with a mountain of laundry waiting to be washed and ironed, and most importantly, my husband has nothing left to complain about. I did everything exactly the way he wanted, and it just didn't work. So now, we’re doing things my way.

I want to thank all of you who encouraged me and gave me the strength to keep pushing forward!😘 😘 😘

Mom hasn't changed one bit. Dad reached out to his cousin, a neurologist, to take another look at Mom's last MRI. He suggested repeating the decompression surgery (stereotactic procedure) because she developed hydrocephalus back then (three months in), and it's almost certainly worsened by now. He says if they could just drain some of that fluid to give her some relief, it would mean the world to me just to have her able to speak again. We actually contacted a famous neurosurgeon through a connection—a friend of my dad's cousin—but he isn't on board with the procedure, seemingly for purely pragmatic hospital reasons. We'll see what my dad's cousin decides to do next.
Palliative care in this country, whether it's in the hospital or at home, is a total disaster👎. Honestly, I don't see why they haven't legalized euthanasia yet. If they refuse to make it easier for a person to live out their remaining days with dignity and without pain, then why not just let them go? They'd save a fortune on end-of-life care; instead of letting someone suffer, just let them die peacefully.😠

Check out these ladies over at Friends Designhttp://www.friends-design.hr/flashin...p?id=index.htm>
They’ll basically act as your personal stylists, telling you exactly which denim to pick and tailoring the perfect pair right to your measurements. These women have actually engineered their own entire sizing system based on specific body types and physical builds.

darkpuma5 said:Ugh, look... It’s not like I’m just sitting here with my hands folded waiting. 😢

I actually took her to a private cardiologist because that was the recommendation, given how bad her vitals have been looking lately. Honestly? The exam turned out great. It was such a relief to see that her heart and the surrounding area are actually in pretty good shape.

But we were told she needs to see a nephrologist ASAP. I called the specialist over and over, and after being brushed off for two days, our primary care doctor (after three separate calls!) finally gave us an emergency referral. We managed to pull that off too, even though they originally tried to schedule us three weeks out. So, we've ruled out kidney issues.

Then we were told to consult with her surgeon. I actually ended up ditching work for a day just to corner him at the hospital. I know, I know—it feels tacky to hunt doctors down like that, and I felt so embarrassed doing it, but he was incredibly understanding. He actually sat down to talk to me, gave me some guidance on what to do next, and told me I was doing the right things.

Next step: we went to a private clinic for thyroid hormone testing because we wanted fast results to catch everything in time. And guess what? Those levels are normal too.

Now I’m calling ERs and they’re turning me away.

Look, money isn't even the issue here. I don't have a fortune, but I'll spend every last cent I have if it makes her feel better. I'm just stuck. I don't know where to turn anymore. I need help. 😢 Where do I go? Who do I talk to?

Essentially, you need someone who will actually sit down, organize all these test results, and make sense of them. The real headache is that there isn't a single doctor overseeing her care, but honestly, that’s just how the entire American healthcare system works.
I don't get why they aren't hospitalizing her for a full, thorough workup; maybe some geniuses in a boardroom will finally connect the dots from all those scattered files.
It might be worth re-running all the tests while she's in that "good" phase, then doing them again once the symptoms flare up. You'll likely see a discrepancy, and that's usually where the answer hides.

I'd suggest trying the thyroid hormone panels one more time. My old man deals with similar stuff, and he had his levels checked twice—once they looked fine, the second time they were absolutely off the charts. His blood pressure fluctuated too, though not quite like your mom's, but his resting heart rate would spike to 130 bpm out of nowhere. He was also taking normabel, but it didn't do a damn thing for him.

Look, darkpuma5, based on what my own family has dealt with, I’ve got to be blunt: you need to pull some serious strings immediately. You either find a heavy hitter—someone with real clout—to get you admitted for a full, exhaustive workup, or you bypass the system entirely and go private. Waiting around for some overworked doctor to actually care about your case is a gamble that usually ends in tragedy. And when it does, nobody takes the blame, leaving you or your loved ones to deal with the permanent fallout.

The only other move is to play dirty. Be relentless, be a nuisance, and start threatening to call the local news or grab a camera crew. Maybe then they'll suddenly find the motivation to act... but honestly, it's a crapshoot, and fighting that kind of battle is absolutely soul-crushing.👎

Melissa Kim45 said:That would be great news. 🙂

I’m with you there. It feels like whenever they start talking about surgery, they suddenly start handing out hope, acting like there’s still a fighting chance at a cure.

Anonymous said:Guys, my aunt was just diagnosed with brain metastases. They're certain about one spot in the temporoparietal lobe that's causing pressure, but the MRI also showed two other tiny shaded areas they can't quite identify yet. They haven't located the primary tumor, though all her other organs are perfectly fine. I've been an absolute wreck for days because I have no idea how this progresses, how to stop it from spreading, or what her actual chances are. If anyone knows anything or has gone through something similar, please, I really need some answers. 😢

When my mom was in the hospital, there was a woman there with a brain tumor that turned out to be a metastasis from something else they couldn't track down initially. It eventually turned out she had sarcoma. She was stuck in neurology for nearly a month. At first, they were leaning toward Hodgkin's or maybe some type of leukemia, but in the end, it was sarcoma. I lost her contact info, so I don't know if she's still with us—she was in pretty bad shape the last time I saw her over a year ago—but I recently tried Googling her name just to see if any obituaries popped up, and nothing came up. So, hopefully, there's still hope 😳.
They'll likely try to surgically remove the brain tumor if it's feasible, and radiation is almost certainly going to be part of the plan regardless.
As for those other spots, you just have to pray to God that the doctors are smart enough to pinpoint the primary issue before it's too late.

Grace Fowler said:Hey everyone. I’m finally checking back in after being away for quite a while. I’ve gone through all the diagnostic rounds—CT, MRI, PET scans—and yeah, the monster is back. After five years, I’m facing a recurrence in my pelvis and lungs. Everything feels like a total blur right now. To be honest, I’ve already battled through 15 rounds of chemo and 9 surgical procedures, but it’s never spread this far before... So please, I am BEGGING for any info or personal experiences regarding lung metastases from anyone who has dealt with this.
THANKS to you all..

I don't have any direct experience here, other than offering support.
Don't let this break you! You beat it once, and you're going to finish the job this time! Just keep the faith and fight until you win.😘

Anonymous said:I’m reaching out because my grandfather was rushed to the hospital last night. It all started with intense stomach pains, diarrhea, and a fever, and he does have a history of a heart attack...
He’s currently in a coma. The doctors are saying he's dealing with pneumonia, a stroke, and sepsis. He's 76 years old and on life support right now.
If anyone here has experience with this or could tell me what the outlook looks like for someone his age...
That’s really all I know, unfortunately. The medical staff hasn't been giving us much information...
Thank you so much in advance.🙏

That sounds incredibly grim, but you have to hold onto hope. Speaking from my own experience, I truly believe that when doctors throw in the towel, God just points a finger and brings them back to health😳.
Stay strong and keep the faith😘

Amanda Williams64 said:Angela Wright, how’s your mom doing? Are her hands still swollen? Did you ever get a chance to try that herbal tea? If you did, I really hope it helped.
Good luck to everyone!

Mom is doing poorly; she’s barely speaking at all now. The swelling in her hands seems to have gone down quite a bit thanks to those medicated oil drops we've been using to massage them.👍 I couldn't pick up the tea because things are so tense with my dad right now—I don't even dare suggest anything to him.
A few days ago, she woke up with these horribly swollen lips; it looked like she’d had some botched silicone implants done. I initially thought it was an allergic reaction because she was cramping up quite a bit, which is what the home health nurse thought too when she stopped by. When I finally managed to pry her mouth open to check if her tongue was swollen, I realized there was this thick layer of fungus covering her tongue, the inside of her lips, and her gums—it was several millimeters thick. I immediately brewed some sage tea to rinse it out, and the nurse advised her to get some oral rinse gel from the pharmacy. Anyway, it cleared up within two days. Honestly, I think it's being caused by the medication delivery; my dear father refuses to give her the pills with yogurt and insists on giving them with juice instead. She ends up just tucking the tablets against her cheeks like a hamster, then crushing and chewing them into her food rather than swallowing them whole. If she takes them with yogurt, she actually swallows them, but feeding her is a constant battle because she gets so nauseated, and it’s clearly exhausting for her to be constantly wiped down and spoon-fed when she keeps spitting.

At any rate, my mother is heading toward the end, taking slow but steady steps. I just hope it happens quickly and peacefully, without the kind of agonizing suffering I've read about in various online forums.😢