Resources and support for families dealing with cancer and serious illness

brightgardener8, you ever wonder what happened to the rest of the crowd from that whole glioblastoma thread (sismis, vpavi16,hal 9000,leny)? I went back and combed through their entire post history. It looks like only lilac and bednkacin have actually checked in lately.
Peace!

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.

brightgardener8;8884762]Vpavi reached out to me about a month ago—her partner passed away. I expect she’ll check in eventually, but honestly, she’s probably just trying to keep her head above water right now. She needs some space to process everything. And get this, lilac messaged me just this morning with some bad news too.

That's heavy. This is exactly what I was worried would happen...
I honestly don't know how you manage to find a silver lining in all this chaos. I haven't mastered that skill yet. Maybe one day I'll get there.
I really want to do everything I can for my mom, but between the endless grind of running between hospitals and clinics and trying to hold down a job I can't just walk away from, there’s basically zero time left for her. It's brutal.
Anyway, gotta keep moving.
Catch you guys later.

I really feel like you’re already doing everything humanly possible for your mom, and honestly, you have to try and find the silver lining in all of this—not just because it's good, but because it becomes this necessary mental shield you build for yourself. I remember when my dad was trying to comfort my mom (she’s battling breast cancer), he told her, "At least we can be grateful that nothing happened to our kids!" It sounds a bit blunt, I know, but it immediately took some of the weight off her shoulders...😘 You just have to hunt for those positive thoughts because they truly nourish your soul. I know it feels impossible sometimes, but just like you said—we keep moving forward!!! One step at a time!

My mom actually starts her first round of chemo this Thursday, so we’re all just sitting here in this weird state of anticipation... She’ll be getting some anti-nausea meds, specifically Alox, so I’m really praying that helps keep the vomiting at bay.
We actually went ahead and asked her doctor about using Beta-glucan to help boost her immune system, but the doctor acted like she’d never even heard of it and gave us this stern warning about not taking anything without medical supervision!!??🙄

I’m honestly feeling so lost regarding what we should give her to support her immunity. It feels like if you look online, everyone has a different "miracle cure" to recommend, but you can't just go shoving random supplements into her system... I’m just stuck on what the right move is..
I think we might just stick to a solid cycle of eating plenty of fresh fruits and veggies and maybe some aloe vera juice...

Someone mentioned earlier that you shouldn't mix royal jelly with aloe vera juice—does anyone here happen to know anything about that?

Carol Sanchez2 said:...My mom starts her first round of chemo this Thursday, so we’re just sitting here waiting... She’ll be getting Aloxy to help with the nausea, so I’m really hoping that keeps the vomiting at bay.
We asked the doctor about using beta Glucan to help boost her immune system, but she basically said she’d never heard of it and warned us not to take anything without explicit permission!!?? 🙄

I honestly feel lost regarding what we should give her for her immunity. You look online and there are a million different suggestions, but you can't just keep cramming everything into her system... I really don't know what the best move is.
I think for now we'll just stick to the treatment cycle, plenty of fresh fruits and vegetables, and maybe some aloe vera juice...

Someone mentioned earlier that you shouldn't mix royal jelly with aloe vera juice—does anyone here actually know anything about that?

There has been a lot of discussion on here already about various dietary supplements and immune boosters that cancer patients have used before, during, or after chemo and radiation. Of course, none of these specific recommendations come from the hospital doctors.
I remember one time, while I was stopping by a local pharmacy looking for some "alternative" options, the pharmacist told me it isn't really advisable to take more than three different supplements at once. Her reasoning was that the body simply can't process all those ingredients if they are too numerous or too diverse, which makes sense when you think about it. She also mentioned that it's better to stick with one supplement for about three months to actually see an effect before switching to something else.
Based on the experiences shared by Angela Wright and other members, ever since my mom came home from her surgery, we've been giving her pure propolis and noni juice consistently. So far, she’s handling the treatments remarkably well; no nausea at all. Besides the prescribed Temodal and dexamethasone, she's also taking Reglan. I can't tell if this specific treatment regimen isn't as "aggressive" as others, or if she was just incredibly well-prepared going into it. One more thing I find really encouraging—her blood work looks solid.
Best wishes to everyone, stay strong and stay present!

The pathology results just came back, and it turns out it was a primary tumor (which they managed to remove). The doctors here in Washington, D.C. are recommending we start Temodal therapy at a 250 mg dosage. If anyone knows where I can source this medication or has any insight into what to expect from the treatment, I would really appreciate your help.

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.

So, I’m finally back home. Just finished my sixteenth round of chemo—yeah, you read that right—and honestly? I feel like half a person at this point. But hey, I'm home, and I guess that's the only thing that matters right now, even if everything feels pretty heavy:-)).
Thanks for all the support, everyone... Grace Fowler

Hi, especially to my mom's supporters.😘
Sending kisses to you all.🙂

I can't quite remember what I did or didn't mention in my last post, so if I end up repeating myself, please know it isn't intentional. Mom is heading in for her second round of chemo tomorrow, even though she was already losing hair after the first one. She’s been in a bit of a fog because of it.
Unlike me, my mother is a total makeup enthusiast.😁
I realized I forgot to mention that we're dealing with microcellular bronchial carcinoma. Most likely, that isn't the whole story. At one point, the doctors said they wanted to start chemotherapy as soon as possible—and we agreed. I mean, what else can you do? They needed some paperwork signed, so my brother took care of that.

At that stage, we only told her about the "growths" she had🙄 and that she was going in for chemo the next day. It sank in after a few days, and today she'll be able to state clearly that she has cancer.
I should mention that we decided to tell her despite the advice from most people, including some doctors. Everyone is different. In my view, you have to gauge how much a person can handle in that specific moment, knowing that the deeper realizations and conversations will follow later. And that's exactly how it played out.

She actually handled the first round of chemo surprisingly well, but as for what comes next—we'll just see. In the meantime (so, just over three weeks now), she had only one real crisis when she had to go into the hospital for an IV (because of some damn sodium issues). Whether it's the liver, the adrenal gland, or what the hell else is involved, we'll probably figure out which other organs are affected during future checkups.

She drinks noni and raw propolis every single day. As much as we can manage, we're following the budwig protocol. I'm working hard to learn as much as I can right now. I'm getting better at preparing that cheese mixture.😁 I stir ground flaxseeds into her soup, into any cheesy dishes, into her yogurt, and I give her Pikovit whenever I can (in fruit salad or juice), and I cook up as many green vegetables as possible while still respecting her cravings.
Today, the lady felt like having spaghetti milanese, so her daughter made it for her this morning before work.🙄

I found some whey protein powder, so I mix a little of that (which smells lovely of vanilla) into real whey. She drinks that every day too. It seems like we've finally stabilized her digestion. I honestly have no idea what's doing it.
It's all been small steps. Little progress every day. She made it, at least, to the second chemo session. I wasn't sure if she would. A visiting nurse suggested a certain regimen twice. We'll get all that sorted once she's back from this second round, but regarding anything related to all of this, we are simply doing whatever needs to be done right now. We told her it will happen however she wants it to. And she wants me to be the only one bathing her. 🙄

I'm realizing how important this life lesson is for all of us. I don't expect anyone to truly understand, except for those who have lived through it or are currently in the thick of it. And as for my issues with the people around me, well, you can imagine. Fortunately, I've reached a point where I just don't care anymore.😁

I lose my cool sometimes—when people bring her sweets, or when I can't explain to folks that she isn't in any condition to have visitors because her white blood cell count is shot and it could actually be dangerous. I talk about these things to others because I find it helps (just some spiritual venting, I won't bore you with it). Not to mention, I definitely snap at her sometimes when she won't listen to me or when she steals my cigarettes.😁

In the midst of all this, there is some grace and a touch of God, whatever you choose to call it.

My heart goes out to those mourning their loved ones.

To those of you fighting, and to those of us fighting alongside you, I wish only persistence. In the end, we are all primarily fighting ourselves.

Hang in there with me. 🙂

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.👍

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.👍

Grace Fowler said:So, I'm finally back home! I just finished my sixteenth round of the fourth cycle, and honestly, I feel like half a person right now, but being back in my own space makes everything feel so much better!:-)).
Thanks for all the support, everyone... Grace

It is absolutely wonderful that you're back home! Hang in there and please keep us posted!😘

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

Angela Wright said:My dad just got back from taking Mom to see Dr. Paladin at the hospital for her MRI results to figure out our next move. We were actually holding out hope that he might be able to drain that fluid buildup again, thinking it might give her some semblance of relief. Instead, the doctor told us that the fluid isn't even the main issue anymore; the tumor has progressed significantly, spreading into the brainstem and the other hemisphere. I had this sinking feeling in my gut all along, which made sense in hindsight, but hearing it out loud still hits like a physical blow. I’m sitting here crying, feeling completely useless and overwhelmed by how much I want to help her. It feels like my hope is slowly flickering out, and she’s my last anchor. Oh, my sweet Mom, we had so many more years left to share together.🙂 It's a damn shame

I am so sorry.😘

Angela Wright said:Dad just got back from taking Mom’s MRI results to see Dr. Paladin over at Mercy Hospital to figure out our next steps. We were really hoping he could drain that fluid buildup again to give her some relief. But honestly, the doctor said that isn't even the main issue anymore—the tumor has progressed so much that it's spread into the brainstem and the other hemisphere. I had a gut feeling this was coming, and logically I knew it, but actually hearing it... it just absolutely crushed me. I'm sitting here crying, feeling so small and helpless when all I want to do is fix this for her. It feels like my hope is slowly slipping away, and she’s my everything. Oh, Mom, we still had so much more life left to live together.🙂 It's such a cursed fate.

Angela, I literally got chills reading your post. I am so, so incredibly sorry... but I have to say, I truly admire your strength. The way you keep showing up for everyone and being such a rock despite everything you're going through is amazing. Hang in there, we are all right here with you. Sending you so much love.😘

Angela Wright said:Dad just took Mom to see Dr. Paladin in a small town in the US for her MRI results to figure out our next move. We were hoping he could drain that built-up fluid again, thinking it might give her some relief. But the doctor said that isn't even the primary issue anymore; the tumor has progressed aggressively, spreading into the brainstem and the other hemisphere. Deep down, I had a gut feeling this was coming, but seeing it laid out plainly hits like a physical blow. I feel utterly helpless and broken, just wanting to do something—anything—to help her. It feels like my hope is slowly flickering out, and she’s the last one left. My sweet mother... we had so much more life to share together.🙂 proklet sudbina

I know how unbearable this weight is. Honestly, there probably isn't a word in the English language that can offer you real comfort right now. My heart aches for you, and it strikes a nerve because any one of us could find ourselves standing exactly where you are tomorrow; we rarely realize how close we are to the edge until we've fallen. Every single day, I wake up and go to bed with a knot in my stomach. I live in constant fear for my own mother, constantly searching for ways to make her comfortable, to ease her burden. The mere thought of losing her is paralyzing. How would I even function without her? She was there for every milestone, every triumph, and every heartbreak. She was my absolute best friend. Even so, I try to mentally prepare for the inevitable, knowing that this void in my life will eventually be permanent. But I have done everything within my power, and I continue to do so. It was the same with my father. He lost his battle, and we all lost him along with him. Believe me when I say that when the end finally came, I felt a strange sense of relief. It wasn't truly living anymore; it was just endurance. I cried myself sick for a few days, just letting it all out, but ultimately, I felt grateful that I had a father whose memory and love stay with me so vividly. Seven years have passed, and my eyes still well up at the thought of him. For us children who are fighting to keep our parents here, it is an incredibly complex stage of life. You view your parents through multiple dimensions. I remember my father as the man from my youth—good, but firm, a pillar of strength and authority who loved me deeply even if he didn't wear his heart on his sleeve. And then, I saw him through the lens of illness: a vulnerable soul looking to his child for help and attention. You find yourself wondering, "Is this really the same person? Is this truly my father?" It is an agonizing transition.
Hang in there, keep your chin up, and do not lose heart! Speaking of which, I am going to track down a contact for you from a guy in Washington, D.C. He has had incredible success with this. Once I get the number, I'll send it to you via PM. STAY STRONG, both for her and for all of us! You have always been the one providing strength to everyone else. Sending love,

Honestly, I’m sitting here in tears—I feel every single bit of what you’re going through, every thought and every struggle... even though I’m dealing with my own cancer issues right now, nothing felt quite as terrifying as when Dad got his diagnosis (acute leukemia). I just had to sit there and watch him slip away... and I couldn't do a damn thing about it. PLEASE, just try to look deep inside yourself and pull out every ounce of positive energy you can find... you're really going to need it. Sending you a huge hug and asking all the angels to watch over you guys right now... Srdacan pozdrav, Grace Fowler

THANKS TO ALL OF YOU

The pathology report just came back:
DG: Temporal and parietal regions of the cerebrum
OP: May 31, 2007 op: excision of tumor in the left temporal and parietotemporal lobes
Pathology results: Multicentric glioblastoma multiforme
WHO grade IV
😢😢😢😢😢
Yeah, that’s exactly why they’re starting Temodal... they managed to get it sourced over there. I'm praying God helps through this. They're already dealing with constipation and the actual treatment hasn't even kicked off yet. He can't stomach any meat right now, just sticking to fruits and veggies and sipping on Noni and Biocil. If anyone has any advice or info, please share. (Specifically looking for anything regarding Temodal—how to take it, the dosage prescribed was 250mg, potential side effects, what supplements might help manage those side effects, and dietary tips)...
😢

Angela Wright, ... I honestly don't have the strength to say anything more than this: please, just stay brave.