Posts by Angela Wright

As far as I know, that toxin is heat-sensitive, so you really should have kept your feet warm.
Give it a shot now, though I suspect your issues aren't coming from the poison itself anymore, but rather the lasting damage it left behind.

Grace Ross20 said:Yeah, we’re talking about the Mayo Clinic here, and Dad really got moved up the line faster than we expected.
His tumor is 5cm, though I have no clue if that's actually operable. It's located in the frontal lobe.
I’ve been reading through this thread and other places, and some people say that when surgeons start messing with tumors like this, they can go absolutely haywire and become even more aggressive.

So, after the stereotactic procedure, is he supposed to get his clear speech back? It's not like he can't talk, but he'll tell me he needs his "coat" when he's looking for his keys, or he'll forget someone's name entirely—like today, he called the ambulance driver by our dog's name.

What's really tripping me out is how he won't even look at his discharge papers, and I have no idea how he's going to handle the actual diagnosis. We haven't told him anything yet because, honestly, he’s as scared as a little kid. He's never been one for doctors; we practically had to drag him into the clinic once we realized things weren't right.

It’s possible he might see some improvement.
Size isn't the only factor in whether or not surgery is an option; it's also about how close it is to critical areas. Once the pathology results come back, they'll map out the next steps and decide if surgery is even on the table.
As for those cells "going wild," that usually refers to a recurrence or a partial removal during a re-operation.

Grace Ross20 said:Sending my best to everyone here. I’ve been reading through almost this entire thread—and all the other ones about tumors—with total focus.

Since every single case is unique, I’m reaching out because I really need some help.

My Dad was admitted to the hospital a few days ago because he was acting disoriented, behaving strangely, and mixing up his words. Other than that, he hasn't shown any other symptoms.
An MRI revealed a mass that they suspect might be malignant, coded as C71.1.
He’s scheduled for stereotactic procedures this Tuesday, and honestly, I’m not entirely sure what that entails. Is it just taking a sample, or is it more like a mini-surgery? It seems odd that he’ll be staying at the Mayo Clinic for five days just for that.
One last thing: what are the odds that a biopsy reveals the doctors were wrong and it turns out to be benign?

I know we shouldn't obsess over every little detail, but right now, we are all incredibly on edge.

And I want you all to know how much this group means to those of us going through this. If you guys hadn't been here last week... I think I would have lost it. But I'm sure you already know that.
I’d give you a Nobel Prize for, well... something.🙂

It’s a highly precise, targeted procedure involving a puncture to access cerebrospinal fluid, where they expect to find malignant cells if it truly is a cancerous tumor.
Unfortunately, it isn't rare that I can get a pretty good idea of what we're dealing with just by looking at the characteristic appearance on a CT scan, though let's hope the pathology from the puncture—which is the only definitive way to know for sure—proves me wrong. Additionally, puncturing the fluid that has built up due to the tumor should actually provide some relief; the mass is putting pressure on the brain, which is why he's experiencing those neurological outbursts and other issues.
I hope you're at the Mayo Clinic neurosurgery department.

Rebecca Brooks19 said:Does anyone know if there's any actual benefit to Dr. Simoncini's bicarbonate therapy? Someone who actually saw him just recommended it to me today.

No. The guy is basically a con artist; they actually kicked him out of the medical association in Italy. He's facing criminal proceedings because people who put their blind faith in him ended up dying.
It’s a completely nonsensical, baseless theory. Just because he had a "theory" didn't give him the right to start playing God and making up random dosages of soda injections.
Word is, everyone in California knows to stay far away from him.

I’m not sure if you noticed I edited my post after you already replied to it...

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Rebecca Brooks19 said:Thanks so much. Can anyone give me more info—would it be better to go to Washington, D.C. for the surgery, or is it going to be the same everywhere? Thanks again.

If it were me, I’d do it. Maybe I’m being a bit unfair to other hospitals, but for this specific thing, Mayo Clinic is the place I’d pick.

Basically, they’re going to cut out everything they can get their hands on that's touched by the tumor mass. We won't know the full extent of the damage until they actually open him up.
If I’m following correctly, hasn't he already undergone surgery? If that's the case, the surgeons would have cleared out everything in the vicinity during the procedure. As far as the bowel is concerned, the issue doesn't necessarily have to be a massive growth. It could just be a polyp that turned malignant and started spreading metastases toward the bladder. They'll likely need to run a colonoscopy as well.

Rebecca Brooks19 said:Can someone please explain these pathology results to me? I know they look bad, but is there any actual hope left??
Fragments of the bladder wall are visible without clearly identifiable muscle layers, heavily infiltrated by tumor tissue composed of irregular glandular formations lined with atypical cylindrical epithelium of moderate polymorphism, some showing a pronounced desmoplastic stromal reaction. Immunohistochemically, the tumor cells are mostly CDX2+CK20+, with CK7 being positive in some areas, while HMWCK and GATA3 are negative, showing cytoplasmic and membranous staining for beta-catenin (without nuclear staining). The findings correspond to a well-to-moderately differentiated enteric-type adenocarcinoma. While primary bladder adenocarcinoma is a differential diagnosis, infiltration from colorectal adenocarcinoma is also considered, so clinical follow-up is recommended.

Oof, that's spread quite a bit. It isn't crystal clear whether it moved from the bladder to the colon or if it started in the colon and hit the bladder. Statistically speaking, though, it’s more likely coming from the colon.
We are looking at metastatic disease here, which is inherently a difficult circumstance to manage.
That said, there is always a realistic glimmer of hope. We just have to pray the treatment responds well enough to reach at least a state of stagnation where the disease stops spreading further. You just have to take it one day at a time and try to stay level-headed.

Donna Ruiz67 said:I'm calling the palliative care team, but they can't get here to check on him until Monday. It’s honestly becoming a tragicomedy at this point. In the meantime, what should I do over the weekend if he starts struggling with pain control or nausea? Last time, the ER barely even showed up. He’s having a hard time breathing, so we have him on oxygen now. There’s probably something else that could be done to make him more comfortable. Besides asking my brother for advice, who else can I call?

Call 911. They rarely skip an intervention because every single call is recorded and logged.

Donna Ruiz67 said:We had one anesthesiologist managing his therapy titration, two LOM specialists, a radiation oncologist who adjusted his treatment, plus two oncologists, and a whole crew of nurses—and yet, nobody thought of such a simple fix. Peptoran. Honestly, it makes me furious how everyone just writes off everything as being caused by the primary disease. It wasn't until the nurse mentioned today that Peptoran 100 is actually stronger than the Acipan 40 he's taking that it finally clicked: he just needs a higher dose of those to allow for an increase in the cortisone. Goddamnit.
He’s doing better than ever regarding the brain issues and nausea, but it's clear there's a new problem brewing... the chest.

Pleural effusion?
If that's what we're looking at, he’ll have to go on Fursemid and Kalinorm. There might come a point where things take a sharp turn for the worse, and then they'll have to perform a puncture. You basically just try to manage it for as long as possible because of the yo-yo effect.

Donna Ruiz67 said:We'll give that a shot, thanks for the suggestion.

Are you familiar with palliative sedation? I'm weighing every single option available for end-of-life care.

No. You should try reaching out to the Hospice Friends Association. They provide field support and resources.

Is anyone taking Peptoran 100? Dex is really aggravating the stomach lining, which is causing some nasty nausea.
In general, a good way to handle this is by mixing ground flaxseed in a glass of lukewarm water. Let it sit for about half an hour until it thickens, then drink the water. The flax releases a mucilage that coats the stomach lining, providing some much-needed relief.

And no, it’s total nonsense that "bad people" only live to be 200 grams. They get sick too, but they deal with it on their own and nobody gives a damn, so we never hear about it.
It isn't a choice. It’s just biology. That's how the world works. Shit happens.

Susan Barnes82 said:One day, when this whole agony finally ends, I’ll write about how my dad—facing inoperable adenocarcinoma with a prognosis of maybe a year at most—actually managed to claw back three quality years just by changing his diet. Right now, he’s going through hell. He’s had two ER visits, and honestly, they’ve been wonderful. But the 35/mcg patch isn't doing a thing, he’s developed oral thrush, he’s completely swollen up, and despite all that, he’s still fighting, trying to walk on his own when he simply can't.
I'm starting to realize that unless you're living this, you truly have no idea what it looks like.
I wonder how long it will take me to get used to these grim sights and eventually be able to pull the beautiful memories to the surface, but that’s a conversation for another time.
I just wanted to say that information is vital, and maybe our story will one day help someone beat their own prognosis.
Unfortunately, they told us jaundice hasn't set in yet, so we’re just waiting for the worst of the suffering to arrive.

An antifungal gel can clear up thrush in two days.
Once the bilirubin levels rise, it actually seems to have an analgesic effect; I think it hits the pain receptors directly.
Don't waste a single second thinking about anything else right now. Focus entirely on the here and now and how to make him as comfortable as possible.
Patches alone often aren't enough; you usually need a combination of different medications to cover the full spectrum of pain. Get in touch with a pain management center so they can put together an appropriate cocktail, titrate the dosage, and teach you how to adjust it yourself when needed.

Susan Barnes82 said:Fursemid isn't doing anything, his blood pressure is spiking, and he can't even swallow anymore. What else can be given to bring down a reading of 200/116?

Don't try to handle this yourself. Call 911 immediately; they need to stabilize him. My guess is some kind of mass is putting pressure on things, which would explain why the pressure is climbing.
Get him to the hospital right now!

Susan Barnes82 said:I’m writing this while my 67-year-old dad sits there with his eyes closed, rocking back and forth in his chair. I am losing hope. For about six days now, he hasn't really known where he is; he cries like a small child, wailing and clutching at the furniture just to stay upright. Nights are the absolute worst. He takes Normabel 5 mg before bed, but it clearly isn't doing the trick. We're looking at the end of a three-year battle with inoperable liver adenocarcinoma—it's spread to his lungs, bones, and brain. When he is conscious, speaking is a struggle because his tongue is so swollen. How can I make this easier for him? Is there anything I can even do?

He needs high-quality palliative care immediately. That means getting a properly titrated dose of pain medication from a pain management clinic and starting whatever supportive therapies he needs. Call his doctor right away and demand home health services to assess his condition and set up daily nursing visits, which he is entitled to under Medicare. Don't take "no" for an answer; they are required to provide this. If they push back, report them to Medicare via their whistleblower hotline immediately. You can find those contact details on their website.
Reach out to the Hospice Friends Association. As an organization, they have palliative medical volunteer teams that provide advice and support through home visits. You can find their info on their site.
This is going to be incredibly hard on you, and please understand that he requires 24-hour care. One person simply cannot do this alone; you need at least two people working in shifts. If you aren't in a position to provide that level of intensive medical support at home, you should seriously consider inpatient hospice facilities, especially since Dad isn't fully himself right now. He is in the terminal phase, and the priority has to be ensuring he has everything he needs for whatever dignity and quality of life he has left.

Rebecca Brooks19 said:Look, I get that they can't predict everything—my own father passed away from cancer, so I know how this works. But right now, those bones are really weighing on my mind. His back usually aches, but for the last few days, he’s been complaining that every single bone in his body hurts. Thanks for the quick reply. 🙂

If I were you, I’d stick strictly to what the doctor said, regardless of anything else, unless they explicitly tell you otherwise.

Rebecca Brooks19 said:Hey there. My mom just had a cystoscopy that showed a bladder tumor. She’s scheduled for surgery on August 8th, and her doctor is pretty confident it's benign. However, she’s been dealing with bone pain for the last few days. Is it possible that this could be metastases, or does the pain not necessarily have to be linked to the tumor? I've been reading way too much lately and it's honestly driving me a little crazy. 🙂

Without a pathology report in hand, nobody can truly guarantee what they're looking at. That said, doctors rarely make a snap judgment based solely on a preliminary estimate unless they are reasonably certain that everything is benign.
Pain can also stem from things like arthritis, which isn't exactly a rare occurrence once you hit a certain age.

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This type of cancer is honestly one of the best ones to deal with if it’s caught this early. It rarely spreads, and the treatment success rate is incredibly high. Usually, after the surgery, you just go through radioactive iodine therapy, and that’s pretty much the end of the road—just regular check-ups and taking daily medication to replace the hormones from your removed Thyroid.
Don't let yourself spiral. You can tell even your wife isn't overreacting, and she's actually going through it right now, whereas you aren't. Just recharge your batteries and tackle this head-on.

Rebecca Carter9 said:I'm wondering how long the recovery takes after the last round of chemo? (I'm undergoing preventative treatment.)

It’s different for everyone. It really comes down to the specific drug and the dosage you're getting. Since you're doing preventative work, those doses usually mean the nausea and general fatigue might hang around for a week or two. After that, your energy levels should slowly start climbing back up.
That said, using certain immune boosters between cycles can actually make a huge difference.
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Needs some Fursemid