Posts by Angela Wright

Laura Sanchez23 said:thanks
I’ve been reading up on all of this myself, and everyone was wondering when she was actually exposed. With my background in mathematical engineering, I know for a fact she wasn't anywhere near asbestos. I realize other environmental factors can trigger illness, but this is just a massive shock. It's like life doesn't even give you a fighting chance... nothing. The worst part is there aren't even symptoms; by the time they show up, it's already too late. You don't even get a chance to process it before she's gone.

The thing about exposure is that you never truly know. We have a neighbor whose apartment sits against an exterior wall, and during renovations, he found an asbestos tile used for insulation. He had absolutely no clue it had been sitting right under the plaster in his dining room for years. The building was put up in the early 70s. For all we know, someone could have been slowly breathing in particles through the ventilation at work for decades.
That said, I suspect those pleural issues are a more common manifestation of asbestos exposure than the ones starting in the abdominal cavity. In her case, it was just a sudden, devastating blow 🙁. May she rest in peace, and I hope you all find some sense of peace in your hearts so you can move forward.

Laura Sanchez23 said:I just wanted to say hello to everyone. I never managed to post anything here while my sister was fighting abdominal mesothelioma. Our story didn't have a happy ending... I'm still in total shock because everything moved so incredibly fast. She was gone in just two months—from the very first symptom to the day she left us, all at just 42 years old. I have to admit, I’d never even heard of mesothelioma before this, and I'm honestly furious because it feels like she never even stood a chance. Is this disease really that aggressive? Is it so vicious that you don't even have time to process what's happening? I really hope someone else here has some better news to share.

Unfortunately, yes. It is an incredibly aggressive, progressive, and rare malignancy, which means the therapeutic options are extremely limited.
Most cases stem from asbestos exposure, though a combination of genetic factors can also trigger the mutations that lead to the disease. For instance, people who worked at plants like ExxonMobil or lived near industrial sites with high exposure levels face the highest risks, as does anyone spending prolonged time in older buildings with outdated asbestos insulation. In the US, those types of environments are often where we see the most frequent cases of mesothelioma.

I am so deeply sorry. Please accept my sincerest condolences. 😢

Grace Ross20 said:Have you tried reaching out to clinics in Europe? If all the treatment options here in the States have been exhausted, Medicare is actually supposed to cover the costs of medical care abroad.
The catch is that nobody ever tells us that; they just want to send us home to die.

I know being a doctor in America isn't easy, and even if they have the best intentions and genuinely want to help, it’s not their call—it’s the board. My Dad's oncologist is a wonderful woman, but her hands are tied. They cut costs constantly, and nobody wants to throw money at expensive treatments for someone they've already written off.

Thanks for the suggestion. I think I'll end up taking him in for the surgery eventually. What do I have to lose?

You need to get three signatures from our specialists on a formal letter stating that the necessary conditions, expertise, or equipment simply don't exist in the US, and specifically recommending this treatment instead. You then take that to the Medicare commission and wait for a decision. Usually, most people pay out of pocket first, and then Medicare reimburses them later if the claim gets approved.
Honestly, I doubt they'll approve it, especially if we're talking about an experimental protocol. From a purely pragmatic standpoint, they don't want to set a precedent because then they'd be swamped with massive claims from other patients. You'll likely hit a wall immediately because, frankly, most doctors won't want the headache of dealing with it. They are Medicare employees first and foremost; they act as gatekeepers of the budget out of fear of repercussions, and only secondarily as physicians. You might have to go to court or take it to the media.
If I were you, I'd go for the surgery. There's nothing to lose.

Grace Ross20 said:Dear boldridge3, this whole thing with the hair... man, it’s beautiful. You actually gave me an idea to prep my Dad's hair too; even though it's short right now, I'll wait until it grows out a bit a little longer.🙂

You're definitely going to cycle through the emptiness, the grief, the joy, and then the sadness again, but that’s just how life works—it's constant flux. What else is there left to do besides live, love, and mourn? I'm glad things are looking up with your marriage; maybe you'll finally feel some relief and be able to focus on everything you actually enjoy.

We've decided to bring Dad home, so Mom and I will find a way to care for him, even though he's in one of those phases of madness right now where he sees things in the room that aren't even there. I'm hoping a higher dose of Decortin will clear that up.

Who should I reach out to for a wheelchair, an anti-decubitus mattress, and all the other gear we're going to need?
I'm also torn on whether I should stick to diapers like they do in the hospital or if using a commode would be better.
He can't move on his own, but with our help, he might be able to. Just thinking it might make him feel a bit more dignified.

The local Hospice Friends Association lends out hospital beds with anti-decubitus mattresses upon request if you provide medical history—assuming, of course, they have any in stock. Caritas does something similar. Same goes for the commode. You can get diapers and bed pads on credit, and wheelchairs too. My mom used diapers, but we used a commode for her until her very last day; we'd wheel her over to the bathroom and position the commode right over the toilet so she could go directly into the plumbing. I'd also wheel her right up to the sink to bathe her. It meant the world to her. She was completely immobile, yet she passed away without a single pressure sore.
We managed to get an electric hydraulic bed with an anti-decubitus air mattress and compressor on loan thanks to a neighbor who happens to be a director at a nursing home. Usually, they rent them out for about $300 a $133 month if they have them available. Your best bet is to call around the local area and ask.

Grace Ross20 said:Thanks, Angela Wright. I think I’m going to move him back up to 8mg of dex; he felt a lot better at that dose. Yesterday was rough—he had these outbursts, completely lost his bearings, spilled yogurt all over himself, and kept pointing at things in the room that weren't even there.
Otherwise, he looks healthy enough. He hasn't lost weight, much like Dad, but you can see the muscle wasting through the skin. Honestly, it's some small comfort knowing he isn't even aware of what's happening to him.

I’m weighing the idea of getting a second opinion regarding surgery, but I'm torn.
Two specialists in Washington, D.C. turned him down, but I know there are neurosurgeons out there who perform miracles. They likely rejected him because of his age and where the tumor is sitting. At the end of the day, how much worse can surgery actually be? We all know what the prognosis looks like for this disease anyway.

There is a code of medical ethics where doctors refuse to operate if they know it will tank the patient's quality of life compared to where it is now, especially if the surgery doesn't buy them any extra time.
That kind of second opinion should have happened before the oncology treatment started. What we're seeing right now is just the standard progression of the disease, unfortunately.
The goal has to be focusing on his current quality of life and making it last as long as possible.
The fact that he isn't aware of his condition is actually a silver lining. It was the same way with my mom.

boldridge3 said:Here I am again with more bad news. Mom passed away on Wednesday. She had come home from the hospital on Tuesday, finished her radiation and everything, and then she just fell asleep overnight. To be honest, I didn't experience any overwhelming shock; I was expecting this, knowing the situation. Every single day, I told her how much I loved her, and she told me the same. I told her that even after she’s gone, she’ll always "visit" me. I prayed to God simply that she wouldn't be in pain, that she wouldn't suffer, and that she would find the strength to stay with me and my sisters. I never actually prayed for a cure because, let's face it, with a diagnosis like hers, that felt impossible. I feel strangely calm, yet somehow cheerful, because I know I did and said everything I ever wanted to say before she died. Truly, God granted her a death without pain or suffering, and He gave us some peace. It might sound shameful, but not a single tear fell at the funeral—not mine, nor my sisters'. In the evening, we just sat there laughing together like we never have before; it was an indescribable feeling. Mom always used to say we shouldn't mourn her, but instead, we should laugh. I don't know if that's unfair of us, but I just can't explain why there isn't that heavy grief. We all know she's gone... maybe the sadness will hit later, or maybe that realization of her physical absence will. During her illness, I gathered so many memories... photos, videos, even the hair we collected when it started falling out from the chemo—I saved all of it as a keepsake for when she's no longer here. I recorded our phone conversations on my phone, too, for that moment when I'll just want to hit play on a video or a recording to hear her voice again. I'm reflecting on everything and thinking that certain things just have to happen. I was unemployed for five years, and then just two months ago, I finally started working; Mom, of course, cried tears of joy. My marriage had been so bad for ten years that I was ready to call it quits, but in the last two months, everything has been wonderful. So, I think everything happens for a reason. To everyone fighting this disease and supporting their loved ones, I wish you so much strength. Leave the rest to God, because no matter which way we turn, He always has a plan for us.

Dear, please accept my deepest condolences.
I completely understand where you're coming from. There will be harder days ahead; you'll miss her most in those moments when you desperately want her presence for her sake, more than for your own.
I hope that peace in your hearts lasts for a long time.

Grace Ross20 said:Dad's blood counts are looking better now, and he just wrapped up his first month of Temodal monotherapy.

The issue is that his speech has taken a turn for the worse again, and the oncologist suggested we drop the Dex down to 4mg. I’m torn—is the tumor aggressively growing, or could this actually be a side effect from the radiation?
He can't speak clearly; he really only knows a handful of words, but he understands everything I say to him. His appetite is fine and he looks okay physically.
I'm terrified the oncologist might pull the plug on the Temodal if he shows up to his follow-up in a month looking like this.

To be honest, I’m not one to go rogue and ignore a doctor's orders, except when it comes to Dex. In our case, they suggested we adjust the dose ourselves based on how things were trending, moving it up or down by 2mg increments as needed. Frankly, 4mg sounds low to me, and it seems obvious that the decline is likely due to potential radiation necrosis. My fear is that you'll end up with runaway edema, which can lead to a massive, dramatic relapse back to square one. If I were you, I'd try the 4mg for a day or two, and if he starts sliding, bump the dose right back up. Definitely circle back with the doctor about this, and make sure to ask about his blood sugar management too. My late grandmother had a monitor, so I used to check my mom's sugar with it. Without Glucagon, things get messy fast.

Grace Ross20 said:Thanks, Angela Wright 🙂

Now he’s gone and developed thrombosis in his right leg, so they put him on Xarelto. I'm assuming people dealing with thrombosis shouldn't be getting up and walking around too much? The doctors aren't giving me a straight answer; they just told me to use my own judgment.

Good grief 😣
I can't say for sure, but you definitely have to be careful about standing up if he's staying bedridden because of the risk of a pulmonary embolism. Honestly, I have no clue if there's any added risk specifically because of the Temodal.
Hopefully, someone with actual medical expertise will jump in here soon.

Grace Ross20 said:Once again, I’m coming here looking for some common sense advice—honestly, you're the only ones who give it to me.

So, my Dad was diagnosed with GBM back in August.
In September, he went to the Mayo Clinic for mapping to pinpoint the radiation target area. They did an MRI then too. At that point, Dad was still on his feet, talking normally, and doing great physically.
They told us they’d call us soon to start radiation and chemo.
A week goes by, I call them. They promise it’ll be "soon." Two weeks pass, still nothing. Meanwhile, his condition is deteriorating every single day; he can barely speak, let alone walk.
Finally, after three weeks of waiting, they call us in. Dad arrives at the hospital completely mute; he can’t even lift his right arm or leg. He just sleeps and has this horrific, heavy cough and trouble swallowing.
I asked if they ran a CT or an MRI upon admission, and they told me there was no need because he’d just had one during the mapping process.

Because of how much his general health has tanked, they’re scaling back the radiation and chemo, limiting him to just 15 sessions. He handled that part okay. They sent him home with a follow-up scheduled for a month later.

The follow-up was today. The new MRI shows slight progression, but the doctor claims it might just be an effect of the radiation, so they aren't counting it against him and are proceeding with Temodal monotherapy.

Here’s what’s eating at me: How can they possibly know if the tumor hasn't shrunk if they didn't take a scan when he was at his absolute worst? In those three weeks while we were stuck waiting, his condition plummeted, but their only reference point is that MRI from when he was still healthy enough to walk into the clinic on his own.
It’s entirely possible the tumor grew significantly during that wait and has actually shrunk now, but I don't have anything in black and white to prove it.
How would you all interpret this?

He likely had a setback due to massive swelling (edema). My mom went through the exact same thing, and it was also due to the waiting. They basically brushed us off because of the holidays and summer vacations.

Regarding the current MRI results, once brain tissue has been irradiated, it becomes incredibly difficult to tell the difference—especially if the changes are subtle—between necrosis caused by the tumor itself and damage caused by the radiation. The areas they outline are really just for orientation. Practically speaking, the whole head is being treated, so even if the tumor had progressed during that waiting period, it’s caught in the radiation field anyway.
There’s nothing else to say; he’s here now. He moves forward with Temodal, and whatever happens, happens. Hang in there and just take things one day at a time as the situation unfolds.

I'm not entirely certain if we're talking about a combination therapy here, but if that's the case, don't sweat it—you're covered. Just keep taking them exactly as you normally would.

Grace Ross20 said:I'm dealing with a mess right now.
So, my Dad is currently in Washington, D.C., and he has a follow-up appointment with his oncologist this Wednesday to figure out the next steps for his treatment. The diagnosis is glioblastoma.

Right now, he’s immobile.
He needs an MRI. He isn't registered here in Washington, D.C., because we aren't locals, so he can't even get bloodwork done or schedule an MRI through the local system, but he's staying here with me for the moment.
On top of that, Medicare won't cover transportation for him because where he is staying isn't his permanent residence, so they're telling us to go all the way to Gospić to get the MRI done.
We can't make it to Gospić because private medical care costs $1000!
Basically, there is no way to transport a man who can't move and has such a devastating diagnosis without shelling out THOUSANDS OF DOLLARS!
It's impossible; we are already barely scraping by just covering his basic treatment costs, and now we have this on top of everything else.

I went to the hospitals in Washington, D.C., and they told me there’s a three-month wait for an MRI.
I don't get it. He is already mid-treatment, yet everyone is just turning him away.
Is there any way I can get a reimbursement since I'm being forced to pay for private healthcare or a private scan?

I don't know if I'm making sense—I'm just in total shock.

The medical facility needs to request his medical records, and Medicare should be covering the cost.
Honestly, I feel like storming into the Department of Health and Medicare with a sledgehammer to tear the whole thing down and start over from scratch.
By the way, the doctor treating him really dropped the ball; he knows a follow-up MRI is required after the first cycle, and I was the one who actually had to scramble to schedule the scan myself. These waiting lists aren't anything new.

My advice to you is this: never rely on doctors to handle the technical or bureaucratic side of things. You always have to stay one step ahead. Everything you just described is an old story, and nothing has changed since 2005 when my mother got sick. In this system, you have to be two steps ahead of everyone else.

George Sullivan31 said:Ma'am, after reviewing the CT scan, the doctor stated it’s a primary brain tumor with metastases. I also had the feeling that the actual primary tumor is located somewhere else—like the colon or prostate, for instance—and it just spread to the brain.

I’m hearing this for the first time. He might have meant that it spread from one area to other parts within the brain itself. But technically speaking, those aren't metastases, because you're still dealing with the same organ. By definition, metastases are cells from a primary tumor that travel to establish new sites in different organs or bones. Since glio cells only exist in the brain and the spine, they can't just wander off and settle in the rest of the body. Even spreading to the spine is incredibly rare.

George Sullivan31 said:A buddy of mine just got hit with a diagnosis of a brain tumor with metastases. Just fifteen days ago, the guy was out walking a few miles, feeling absolutely fine. Then, over the last couple of days, he started forgetting how to tie his shoes, having trouble walking, and losing control of his hands. He had a CT scan done and surgery is scheduled for Tuesday. I honestly can't wrap my head around how brutal this diagnosis is.

Think about it—if there are metastases in the brain, they have to be coming from some other primary tumor. Gliomas don't metastasize.

Ashley Reed98 said:My guy’s tumor came back last year. Ten years ago, the diagnosis was anaplastic astrocytoma. He went through chemotherapy with Temodal, radiation, and surgery back in 2005; then in 2006, he had to have another surgery after a severe seizure and a fall that caused a brain contusion.

After all that, he actually recovered quite nicely. There were some minor lingering effects, but for ten years, he lived practically normally—right up until last year. He was even driving and living his life just fine.

Then, at the end of April last year, he was watching TV and seemed to lose consciousness for a few moments. We rushed him for an MRI immediately, and it showed a recurrence. The neurosurgeon said surgery wasn't even an option, and the oncologist was skeptical about more radiation since he had already been through quite a bit. They did a biopsy, which revealed it was glioblastoma and anaplastic astrocytoma. By late August, we started radiation again because there was no other choice, along with Temodal. He did 30 sessions of radiation while taking Temodal 160 mg every single day. After the biopsy, he was also put on dex—8 ml twice a day.

Following that cycle, they did one round of 160 mg for 20 days, followed by two or three cycles of 320 mg for five days. He couldn't handle those higher doses at all, so they switched him back to 20 days of 160 mg with a nine-day break. He tolerated the lower doses much better; he took the Temodal alongside Reglan to help with the weakness, and he was doing okay.

He stayed like that through the end of August. Of course, we were doing MRIs every three months and monitoring his blood work... everything seemed fine. I know that as late as May, the oncologist was still satisfied with the MRI results. We gradually tapered off the dex until he was down to just 2 ml in the morning.

We remained optimistic until the end of August. That’s when the MRI looked much worse. The medical board decided on PCV chemotherapy; he finished one cycle, but he didn't make it to the second.😢.

One night, there was a hemorrhage—bleeding in the brain. Everything moved so incredibly fast... I honestly didn't think it meant the end. He woke up in the middle of the night with a massive headache, losing function on his right side, vomiting... There was nothing the hospital could do; we just had to wait. By the time the ambulance got him to the hospital, he was unconscious, and within two hours, he was already in a deep coma.

I spend so much time thinking about that night. Could I have done more? Did I do everything in my power? I can still see us waiting for the paramedics; he was almost out of it, and I was wiping him with a wet cloth, telling him over and over that I loved him and that everything would be okay.
The doctors said the bleeding was too extensive; too much of the brain was affected. Late that night, he fell asleep forever.

Up until his final day, he lived "normally." He was mobile and pain-free, which is our one small comfort... It would have been so much harder if he had lost himself piece by piece; he was terrified of that. But he was such an optimist, always talking about what he was going to do once he recovered. I knew his diagnosis—I think we all did—but nobody expected it to end this quickly.

But the fact that he’s gone hurts so much. I miss him terribly; it feels like there’s this huge void inside me.

p.s.: Sorry for any mistakes in my English, I'm not from the US.

Honey, you were gifted ten wonderful years. The battle was lost the moment they determined the tumor wasn't operable. In some places, someone might go for an MRI every four months and treat any sign of recurrence with Gamma Knife, but unfortunately, we are far from having access to that here.
The bleeding was likely caused by the damage from the massive radiation doses his brain had endured over his lifetime. It was basically an all-or-nothing gamble.
Honestly, given the hand he was dealt, it’s better that he actually made it out on his own two feet. I find myself wondering why God didn't just take my mom at the table instead of forcing her through that kind of agony—something that stripped away every ounce of human dignity. I would have been truly grateful for that.
I know that doesn't offer any real comfort and that the void you're feeling is immeasurable, but that's just how it is.
I wish you peace in your heart and hope you somehow find the strength to keep moving forward.
My sincere and deepest condolences.

Linda Patel27 said:Hi there!
I really need some advice if anyone knows anything or has gone through this.
My mother-in-law just finished six weeks of chemo and radiation following surgery for a Grade 4 glioblastoma. They’ve taken her off all her medications, including the dexamethasone, until her follow-up MRI in December.
The problem is, she’s been dealing with daily diarrhea for about 7 or 8 days now. We thought it might be a side effect of the treatment, but her oncologist told us that shouldn't be the case unless she were still actively undergoing chemo.

Does anyone know if this could actually be linked to the therapy, or is it more likely just damaged intestinal lining or something else entirely?
And if you have any suggestions on what she should take, I would be so grateful.

It isn't from the therapy.
Get her those Prolife probiotic ampoules. My daughter struggled with diarrhea for twenty days straight and nothing worked until she had that first dose of Prolife.

Donna Brooks20 said:Thanks for getting back to me so fast. I feel a little better knowing you said Melada is a solid doctor and will point us in the right direction.
Is there actually any hope for a cure, or has this all just gone too far?

Look, if we're talking about metastatic disease, that’s a heavy hand to be dealt, no doubt about it. But honestly, so much depends on the specifics—everything from how far it's spread to the actual grade of the malignancy.
Listen, what is what, you have to lay all the facts out on the table, face them head-on, fight, and try not to let it consume your thoughts.
For the rest of us, this should serve as a textbook example of why you never ignore symptoms; you check them out immediately.

Donna Brooks20 said:I’m asking for help. My partner was diagnosed yesterday with testicular cancer at the Mediko clinic in Cleveland.
It all started last week when he complained about losing his ability to speak. It happened twice in one week, and that's when he finally decided to tell me. Then he just added, "You know, my left testicle has been bothering me for a while now."
That was last Wednesday.
By Friday, we were already at the GP's office, where she ran a full blood panel, checked his markers, and a few other things. On Monday, she told him he urgently needs to see a urologist and a neurologist, so we booked everything at the clinic in Cleveland.
We went to the clinic, and the urologist confirmed it’s testicular cancer and that surgery is necessary. The neurologist said his stuttering—or rather, his inability to speak—could be anything and insisted we get an MRI. We got the MRI done, they reviewed it this morning, and then called us in a rush saying the reading wasn't sufficient and needs to be reviewed by someone in neurosurgery at the Mayo Clinic.
I didn't know how to get him to the Mayo Clinic, so I scheduled a private appointment with Dr. Ante Melada for next Tuesday.
I also scheduled an appointment with an oncologist today at 5:00 PM so he can talk things through with us.

He’s actually been feeling sick for a while; he knew something was up but kept quiet.
Does this bad MRI mean the cancer has metastasized to the brain?
What do we need to do next? How does this whole process work?

Panic is setting in, but I’m trying to stay level-headed and organize our next steps.

Testicular surgery (do we need a referral from the doctor?), then the Mayo Clinic to check the brain, and then...
Or should we be doing things in a different order?

Best regards,
Midnight

Man, I feel for you. I'm worried he waited too long and that there might be metastases in the brain.
Melada is a great doctor. He'll explain exactly what's happening and what comes next. He'll definitely need surgery, followed by more tests to see if there are any other sites involved—most likely a PET CT and probably a bone scan.
If there is a metastasis in the brain, radiation might be an option, but don't rule out surgery like Gliadel if the spot is small enough and localized. Melada will suggest the best path immediately.
Regardless, you're looking at a major fight ahead. First the surgery, then almost certainly chemotherapy.
Hang in there.

Brenda Mendoza57 said:Please, I need help.
My mom was discharged to wait for her next checkup to see if the chemo and radiation actually worked. In the discharge papers, the oncologist prescribed continuing the Dex with dexamethasone, but the pharmacy tells me that the injectable version isn't covered by Medicare. $57 That's for just 12 days!
I can't afford that right now, and nobody told me there would be an out-of-pocket cost for the Dex; I'm totally lost here.

It’s actually a good thing they’re even willing to sell you the ampules, because according to the indications, that stuff is strictly meant for hospital treatment. We ended up buying the ampules ourselves and mixing them with the tablets prescribed by the doctor—we basically split the daily dose into three separate doses to make it work.
Your other option is to see if your local health department or social services office can provide the injectable Dex for you.

Get a urinalysis done. If you've got an E. coli infection, it can lead to a nasty case of UTIs.

stormyfalcon68 said:Just wanted to give an update on how things are moving
The latest CT scan looks pretty bad; the metastases are progressing.
We’re waiting until Wednesday for the medical board to review everything and decide what the next steps are—if there’s even any point in sticking with chemotherapy at this stage...

Based on the current line of therapy they're using? No. They'll look into a different line of treatment or potentially surgery if the area can actually be touched.