Posts by Angela Wright

Hang in there, wiredotter75! When is Erbitux finally hitting the market?

Linda Patel21 said:Thank you all so much for the kind words. Honestly, I’m struggling. It feels impossible to wrap my head around the fact that he’s actually gone. Just two months ago, he was talking about all these big plans for the future, and now? Nothing. Sometimes it feels like this ache is never going to stop; every single day just gets heavier. It’s hard to process how a disease can just dismantle a person in sixty days. I catch myself spiraling, wondering if there was anything else I could have done. Every doctor and specialist I talked to gave me the same answer: there was nothing left to do. That specific type of bladder cancer is a monster; it offers no mercy. My only shred of comfort is knowing he wasn't in pain. I know you all get it because this is the only thing on my mind lately. People say life goes on, but a massive piece of my heart went with him. He was my rock, the one person I knew I could always lean on. I still can't bring myself to touch his things. I find myself waiting for my phone to light up with his name... it’s all just too much right now. You all seem so strong, but I don't feel brave at all. To everyone out there fighting this evil, I truly hope you win. Sorry for being such a downer, but this grief is just my reality right now...

Everything you're feeling right now is completely normal. We all hit this wall when we lose someone close to us. Let him rest in peace, and give yourself the grace to grieve and eventually accept this reality. Don't spend your energy looking backward—there's no undoing what happened, even if you feel like mistakes were made. None of us have a crystal ball; we all just do the best we can with the tools we have. For now, let go of the guilt and focus entirely on yourself. That’s how you survive this. If you need to step away from everything for a while, do it. You will get through this.

Linda Patel21, take my condolences.
Hang in there and try to find some peace of mind. You all did everything humanly possible. At the end of the day, that's just how that illness works.

Jamie Chase said:Angela Wright, you might remember me—I’m talking about my mom. She just finished five rounds of chemo, and the results are actually looking up; her markers plummeted from 3000 down to 75 before this last round, and that fluid buildup in her lungs has finally cleared out. She’s feeling significantly better than she was, which isn't saying much given how bad things were, but it's progress. The hardest part right now is the exhaustion; she has zero energy and can barely walk a few steps around the table before needing to sit or lie down. I wanted to ask if I should get her more beta-glucan once she finishes this final treatment, since I've seen people on this forum suggest it's better used during the recovery phase after therapy.

That sounds like incredible news; it looks like the treatment is actually working. Definitely get her some beta-glucan. She's completely drained right now, and it should really help boost her strength and aid her recovery.

Sleep deprivation triggers a massive spike in stress hormones produced by your adrenal glands. When you're stuck in a state of chronic stress, those glands go haywire, pumping out hormones at all the wrong times, which essentially wreaks havoc on your entire metabolism. This metabolic breakdown leads to increased fat storage throughout the body—a major factor in cardiovascular disease, which remains the leading cause of death globally. On top of that, it significantly ramps up your risk for cancer, sitting right there as the second most common cause of death worldwide.

Here is the take from R.J. Palacio 😉

Robert Adams88 said:What exactly are liver function tests? You're probably thinking of ALT and AST, right?

If that's the case, then fine. It's all good.

ALT-13 AST-17
ALT-13 AST-17

Everything looks fine except for that total bilirubin level. Also, my uric acid and hematocrit are drifting slightly away from the normal range.

Those are liver function tests.

Robert Adams88 said:The follow-up results show 48, which is a huge jump from that initial 93. I'm heading back in a week to run the test again.

Does that have anything to do with gallstones?

It’s possible. Do you have them?

Linda Patel21 said:I buried my dear father today. It’s been only two months since he was diagnosed with gallbladder cancer that had already metastasized. We didn't even make it to chemotherapy; he wasn't a candidate for surgery, so they just placed a stent. Thankfully, he wasn't in constant pain, and until his very last day, he truly believed he’d be out there planting an orchard. He struggled with confusion, high fevers, and a loss of appetite. I tried so hard to grant him every single wish. Deep down, I knew the end was looming, but I kept holding onto that sliver of hope anyway. I knew losing him would be hard, but I never imagined it would feel quite like this... I miss him already. My heart is heavy, and I just wish we could have had a little more time. To just hug him again, rub his back, or even have him give me one of those grumpy looks—anything. I haven't been on these forums for very long, but I've met some wonderful, brave people here. I want to wish you all nothing but strength in your battles; don't let it break you, and stay by your loved ones' side until the very end. My days are just a blur of grief and tears, until I catch myself remembering the beautiful moments...

Please accept my deepest condolences.😢
I know how much this hurts. Honestly, no amount of time in this world would ever feel like enough to do everything you feel you missed. When it comes to our parents, there is always a deficit of time. 😢
Take pride in the fact that he was your father, and find peace knowing that when he passed, he felt loved and lived with purpose and hope. He’s in a better place now.
The days ahead will be heavy, but this mourning period will pass. Life moves forward—maybe it looks different than before, but that’s just how it works. Eventually, you’ll find yourself smiling through the memories of him.
Hang in there.

rustyscout31 said:That’s exactly how it’s going to go. We’ll watch how things develop until Friday, and then it’s back to the pills over the weekend. My mom is still fully conscious for now, but I can see the changes in her mood and how she carries herself. One morning she won't be able to get out of bed, and the next afternoon she’s singing and constantly wanting to eat 🙂 my little love; she’s only 110 pounds, and with my irritable bowel syndrome, I’m slowly catching up to her... but let's not talk about me right now. Thanks, Angela Wright, I have a pretty good idea of what's coming—our palliative care doctor explained it very gently today...
😢

Oh, my dear 😢, stay strong. You have more strength inside you than you realize. Just take it one day at a time; don't try to look too far ahead, or you'll just burn yourself out.
Make the most of this time while she's still herself. I wasted mine just staring at her in bed and draining myself dry 😢
Mom has an appetite specifically because of the dex. She’s going to start gaining weight soon because of how dex hits the metabolism. Fat will accumulate in her torso and abdomen, and her face will round out like a full moon. Her skin will become thin as paper, looking almost translucent. She needs regular skincare and hygiene (at least one full shower a week, plus daily sponge baths in bed).
With these doses of dex, you really need to monitor her blood sugar regularly because it messes with the pancreas, and she'll likely need something like Glucophage or Glucophage. Definitely ask the palliative doctor about that. I knew a famous guy whose husband fell into a coma—not because of a tumor, but because his blood sugar spiked uncontrollably from high doses of dex.

rustyscout31 said:Thanks, dear. She’s currently at 12 mg. I actually tried dropping her down to 8 mg, but she started complaining about severe heartburn and vomiting. So, we went back up to 12 mg daily. Yesterday she was under palliative care receiving injections. Her doctor mentioned she could just take her daily dose via an ampule shot immediately instead of doing the gradual tapering. When I pushed back and suggested tapering might be better, he basically said there wasn't much point since dexamethasone has a delayed effect anyway. Whatever, I guess she knows best.🤷

In my experience, the fluctuations in how this stuff works are just way too obvious. It was like this with my mother—she’d be sharp as a tack in the morning, but by evening, she’d start slipping, and those episodes would get much more intense, especially when the weather shifted. Looking around, it seems like everyone else is seeing the exact same thing.
I don't know, maybe try both ways and see what sticks.

ruggedskipper11 said:Wrong. They aren't even the same thing.

Hepan
Composition
Every 100 grams of this cream packs a punch with 50,000 IU of heparin sodium and 0.5 g of dexpanthenol.
Here’s what you’re looking at under the hood: white petrolatum, emulsifying wax, isopropyl myristate, lanolin, methyl hydroxybenzoate, propyl hydroxybenzoate, and purified water.
Packing up.
Just 50 grams of cream.
How it works.
Heparin sodium works by preventing blood from clotting once it's absorbed, making it an effective tool for both preventing new clots from forming in your vessels and treating ones that have already shown up. This effect is boosted by the inclusion of dexpanthenol—a vitamin that, when applied topically, helps soften the skin and speeds up the healing process, which really helps take the edge off any localized irritation.
How and where it’s published.
You can pick this up over the counter at any local pharmacy or drugstore without needing a doctor's prescription.
Expiration dates aren't just suggestions; they're the line in the sand. If you ignore them, you're basically playing Russian roulette with your health. It’s about knowing when a product has officially crossed the threshold from useful to useless.
Check the packaging. Don't use this medication once it's expired.
How you store your medication matters more than most people realize. It’s easy to just toss a bottle in the medicine cabinet and call it a day, but that’s a mistake. Most bathroom cabinets are basically humidity chambers thanks to the shower steam, and heat is the ultimate enemy of stability. If you want to ensure your meds actually work when you need them, you need to be smarter about your storage setup.
Keep this stuff under 77°F and out of the reach of kids.
izvor:Check out this link regarding the HEPALPAN cream: http://www.centar-zdravlja.net/proiz...pan-krema-391/

HEPALPAN®
cream, gel

Each gram of this cream contains:
Heparin (in sodium salt form) 300 IU.
Allantoin at 3.0mg.
dexpanthenol 4.0mg

Each gram of this gel contains:
Heparin (in its sodium salt form) 300 IU.
Allantoin at 2.5mg.
If you’re looking at dexpanthenol 2.5mg, don't just assume it's some magic ointment that fixes everything instantly. It's basically like putting high-grade motor oil in an engine that's already seizing up—it helps smooth things out and aids recovery, but it isn't a miracle cure for structural damage. It’s great for skin hydration and minor irritation, acting as a soothing agent to help the barrier repair itself, much like how a good moisturizer works after a day out in the scorching Arizona sun. Just use it for what it is: a solid supporting player in your skincare routine, not the entire cast.
How it works:

Whether you’re dealing with the nagging discomfort of poor circulation in your legs or just trying to soothe a nasty bruise or a sprained ankle, HEPALPAN cream and gel deliver. They pack a potent blend of active ingredients specifically designed to knock back that swelling and pain.

The HEPALPAN base cream really sticks to your skin, which means whatever you apply on top actually stays put and keeps working for a long time. It’s packed with natural fats that nourish and feed your skin, rather than just sitting on the surface.

The HEPALPAN gel features a hydrophilic base with just the right consistency, making it easy to spread over large areas of irritated skin or directly onto sensitive spots without any struggle. Once you apply the gel HEPALPAN, it releases moisture that evaporates steadily, providing a soothing cooling sensation that helps dial down inflammation. As that water evaporates, it leaves behind a thin, invisible protective film that shields the damaged tissue from further irritation. Plus, because the base is so highly hydrophilic, the gel HEPALPAN washes off skin and clothing effortlessly with just plain water.

How to use it:

If you’re dealing with that heavy, nagging discomfort from poor circulation in your legs, HEPALPAN cream and gel are designed to help ease those symptoms, such as:
Whether you're dealing with that nagging ache, sharp stinging sensations, or that constant feeling of tension caused by sitting too long, standing all day, or even just navigating the physical toll of pregnancy—it’s exhausting. It’s like your body is constantly under pressure, and honestly, it wears you down.
Malnourished skin with altered pigmentation.
Those tiny, visible blood vessels? They’re basically ticking time bombs just waiting to burst.

Whether you’re dealing with a nasty bruise, painful swelling from a blunt impact, or just one of those everyday mishaps like a sprained ankle or a dislocated joint during a pickup basketball game, HEPALPAN cream and gel HEPALPAN are solid options to help ease the discomfort. They work effectively to soothe the pain and inflammation that comes with soft tissue injuries or sports-related tweaks.

Apply gel HEPALPAN right before you hit the sack. Use your fingers to give your lower legs a gentle massage, working your way upward toward the knee. You’ll want to keep at it for about five minutes—just keep massaging until the cream is fully absorbed into your skin.

Just rub in some gel HEPALPAN twice a day, giving it a quick, gentle massage while you apply it.

It’s perfect for daytime use since it won't leave any nasty stains on your clothes, and you don't have to worry about wrapping the area in bandages after you put it on.

WARNING:
Don't go putting HEPALPAN cream or gel on open wounds. It's just not meant for that.
- For external use only
- Store in a cool place
- Keep out of reach of children

Expiration date:
3 years

PACKAGING
40g cream tube
40g gel tube
source:http://pharmacyonline.com/hepalpan-cream-gel

Look, the base formula is identical. The only actual difference is the concentration of heparin and dexpanthenol, plus the fact that Hepan doesn't include allantoin. Honestly, when you're dealing with vein issues, allantoin isn't even a major player—it’s more for treating things like acne, eczema, or psoriasis. It's just an extra skin-care additive, much like how dexpanthenol works. You'll see both prescribed for the exact same diagnoses because they perform equally well. In fact, Hepan actually packs a much higher concentration of heparin, which is the heavy hitter when it comes to treating veins, compared to HEPALPAN.

If these minor "differences" are such a dealbreaker for you, maybe try looking across the border in Mexico; you'll likely find it there without a hassle. I'm worried that if the medication isn't officially registered here in the States, it's going to be pretty tough to get your hands on it legally through official channels.

rustyscout31, you either bump the dose up or scale it back by 2mg as needed. There’s no other way around it besides basically eyeballing how you're feeling. That’s what the doctors at the hospital told me. The absolute ceiling is 24mg.

Vedran posts on another forum too, so he finds it a bit exhausting having to repeat himself here.
Long story short, he managed to get approved for a new treatment plan using a medication he hasn't tried yet, and he’s hoping it actually works. He might have already started the first round.

Maybe try using this http://www.ichthyol.de/aknichthol.html?

She’s entitled to medical transport from her house to the hospital and back—that’s something she needs to coordinate directly with her primary care physician. She should also weigh the radiation option carefully; if she reaches out now, she probably won't even be seen until September.
I’d suggest reaching out to palliative care to have them train you on how to administer the injections. Waiting around for them can drag things out and just cause unnecessary stress for everyone involved. It’s much more efficient if they just swing by once a week or come whenever you give them a call. In my experience, that approach works way better.
EDIT: When my wife was on dex, we never used anything higher than 0.5 mg, though I remember someone mentioning here a while back that they managed to find 1 mg doses. It might be worth checking around local pharmacies to see if that's an option. Since we're part of the European Union now, anything available over there should be accessible here too.

Robert Adams88 said:My labs show the normal bilirubin range is 7-30, but I’m sitting at over 90.

What does that actually mean?
My hematocrit and uric acid are just slightly elevated, but everything else looks fine.
Help!

Why did you even bother getting tested in the first place?
Are your whites looking yellow? If they are, you clearly have jaundice, and we need to figure out why. It could be anything from hepatitis to gallstones, or even something more serious like a tumor. How are your liver enzymes looking? Either way, you're going to need some follow-up testing.

ruggedskipper11 said:So, I saw you guys talking about this vein supplement, and I’ve already wasted my afternoon calling a bunch of local pharmacies only to find out they don't carry it. Where on earth are people actually getting this stuff? Does anyone know if any shops in San Francisco actually have it in stock?

Look, you can just grab Hepan here—it’s got the exact same ingredients. It’s manufactured by Jadran. There's also Hepalpan, which is made by Galenika.

In hospitals, they rely on Lysol polyalcohol hand antiseptic. It’s actually mandatory, especially in places like the ICU or neonatal units. You can even use it to wipe down a keyboard.

Alex Hayes2, it’s possible to deal with some brain edema and certain neurological hiccups as side effects after radiation, but everything stays under control with Dex, and it clears up pretty fast.

rustyscout31, with that much dexamethasone, she absolutely has to be on peptorane. Assuming we're talking about those 0.5mg tablets, you could cover that 12g dose with three injections—each one being 4g. People tend to claim that stuff is strictly for hospital stays, but I actually managed to pick up the ampules and syringes at a local CVS, and my home health nurse showed me exactly how to administer the shots to my mom. Personally, I’d give her one injection a day and handle the rest with tablets, making sure to split the dosage into three parts throughout the day to maximize the efficacy. And what about phenobarbital? Since it's an antiepileptic, she really needs to be receiving that too.
It's such a shame she won't go through with radiation; it would do wonders for those brain metastases.

crimsongull20 said:I'm sorry. 😢

It’s heavy, knowing she won't be here for me anymore, but that was her call to make. She just didn't have the stomach to fight it or even wrap her head around the diagnosis; she wanted out, plain and simple. She was just done with everything. It’s actually wild to me how someone could survive nearly three years with such an aggressive cancer without ever committing to actual treatment. It’s a damn shame, because if she had just faced the reality when it started—given how strong her immune system was—she probably would have lived long enough to die of old age instead of metastases.

I knew a whole group from my college who came back from Egypt with everyone suffering from dysentery—because they were "smart" enough to drink nothing but Coke with ice 😉 . They actually got turned away at the border when trying to head back into Canada, so they had to detour through Canada just to get home. Throughout the whole mess, they were all sucking on basic Prolife probiotics that someone had wisely packed, which was the only thing that kept them stable until they could get to the hospital and start antibiotics.
I’m surprised they didn't keep you in the hospital. It’s possible you cleared out the worst of the bugs, but your gut flora is definitely trashed. You need to go hard on the probiotics regardless.