Posts by Angela Wright

It sounds like you might be dealing with some nerve compression. Try massaging your palm and wrist; if you start feeling those sensations, that’s likely the culprit. That said, you aren't going to get much relief without seeing a physical therapist.

From what I understand, Medicare approves wheelchairs based on a specialist's recommendation, but the models they greenlight rarely actually fit the patient's specific needs, so people end up paying out of pocket just to get a decent one.
I have a feeling someone here will chime in soon with some firsthand experience, especially since I've seen plenty of threads discussing similar headaches.

analogwolf44 said:Anyone? 😢

I was just checking out a flyer over at Savannah yesterday regarding those dysphonia speech exercises and learning how to use a passy-muir valve. It mentioned that you usually need somewhere between 10 and 20 hours of work to get it down.
The big question is, do you have to grind through all of that first, or can you actually balance therapy sessions while working? I'm not entirely sure, but my guess is there might be a waiting list before you even get in for treatment.

In my opinion, you should be able to head back to work after the period of silence, but you absolutely need to push for as much vocal rest as possible.

Lawrence Ortiz6 said:Good evening, everyone.

It looks like my father (60 years old) has lung cancer. He’s been coughing brutally for over six months now; he was originally diagnosed with pneumonia, but the cough just wouldn't quit. He’s lost weight, and for the last five months, his right arm—from the elbow down to the hand—has been hurting intensely. He’s incredibly stubborn about medical checkups, so we only managed to talk him into getting an X-ray of that arm three days ago. Based on the X-ray, the orthopedist sent him straight to the Mayo Clinic for an emergency biopsy. He told him there appears to be a growth eating away at the bone (the ulna, if I understood correctly). This morning, he coughed up blood; my brother said it looked like a clot about the size of a toddler's hand. He’s scheduled for the arm biopsy next week, and I’m driving him to the intake appointment on Tuesday morning.

How likely is it that the issue with his elbow is a metastasis from lung cancer? He was a heavy smoker for about 25 years, but he quit back in '94 when my sister was born. From what I’ve been reading online, the prognosis doesn't look good.

What should our next move be? Thanks for understanding.

It’s possible, but it could also be something else entirely, like TB.
If I were you, I’d head straight to the ER in Jordan for immediate care regarding that coughing up of blood.
Doing a biopsy on the arm without running thorough tests on the lungs—which is most likely where the actual problem is originating—doesn't make much sense to me.

goldenpanther14 said:If we're talking about a primary care physician... they don't know a single thing about this, so you can forget about getting answers there. However, the hospital mentioned they're handling it—that oxygen will be waiting for the patient at home—so I’m hoping that won't be an issue. Do you think I could ask the Hospice Friends Association or the Sailboat association about nasal cannulas? I have no clue where to buy them, and I'd love to stock up on some spares at home. I also heard there are cannulas as long as 30 feet, so I'd really like to find out where to get those. Thanks again for the reply. 🙂

God, these primary care doctors drive me absolutely crazy.🤦 Look, buddy, just grab your phone and call Medicare or the hospital and find out for yourself—that's literally what you're supposed to do. At least now you'll be informed for next time.☕
All the supplies should be covered under the same benefits, too.
You'll definitely get more useful information from local associations than from a GP; that's a guarantee, especially through groups like Sailboat.👍

brightlynx28 said:I'm currently in the States. Honestly, I'm worried the dogs might pick up something weird, or there could be some actual issues at the border—either way, I really don't have the energy to spend my time wandering through hospital hallways here.

Look, you live in the EU—borders aren't really a thing anymore. But if we're talking about stuff like phenobarbital or Normabals, for instance, and the cops pull you over on the road in the States or anywhere else in Europe with those in your pocket, you absolutely have to be able to prove they were prescribed by a doctor.

brightlynx28 said:So, basically, my dad can't just pick up his meds here and mail them over to Germany because I don't feel like driving all the way back to his doctor right now?

Where exactly are we talking about? Canada? If you're trying to ship from Canada, it's a non-starter unless the pharmacy is registered within the EU.
If it's coming from America, everything is fair game since we're part of the EU.

Matthew Jackson2 said:What’s the current deal regarding traveling with your own prescription medication? I mean, does it actually matter if the box has been opened?

You’re going to need a doctor's note.

goldenpanther14 said:Thanks so much for getting back to me. In the meantime, my dad ended up being admitted to the hospital. What I’m wondering now is—if they decide to discharge him soon—how does the home oxygen therapy coverage actually work? Before he was hospitalized, we were in and out of the outpatient clinic and the hospital several times; every single time, his oxygen levels just wouldn't hit that specific threshold required for insurance to kick in, even though he’s been in pretty bad shape for months. How does this process play out? From what I understand, you don't just get an oxygen concentrator delivered overnight; sometimes there's a weeks-long wait. It’s confusing. Are they going to send him home and leave him without oxygen for a few weeks while the insurance paperwork clears? Or is there a different protocol when transitioning from the hospital to home care?
I really appreciate any insight.

I'm not entirely sure how the logistics shake out. It’s possible the hospital will provide some supplies via a discharge order to bridge the gap while you sort out the insurance claims.
Make sure you talk to the Medicare coordinator before he's discharged. You also have backup options through the Hospice Friends Association, and you might want to reach out to the Sailboat association for advice too.

hollowgardener50 said:Can anyone tell me if it's okay to bring certain meds from Canada into the US, and if there's a limit? Specifically looking at stuff like Prostamol una and Detralex. Also, what's the deal with bringing over hygiene supplies like Band-Aids, bandages, and things like that?

Hey there!

Basically, any medication officially registered here in the States can be brought in legally, subject to standard customs value limits. I'm not entirely sure what the specific dollar threshold is when coming from Canada.
As for meds that aren't registered locally, they can only be brought in through official pharmacy channels via emergency imports, and you absolutely need a prescription for them.
Trying to import them yourself on your own is illegal.

Amy Price8 said:I’m reaching out to all the kind souls on this forum because I really need some help. I am 74 years old, a non-smoker, and I don't drink. I've been diagnosed with pancreatic head neoplasia. My weight was always steady, but then I started dropping pounds rapidly, which prompted me to get an abdominal ultrasound and basic blood work. Everything looked fine on paper except for the ultrasound results. It was a total shock, and being hospitalized was just as jarring. Last November, they had to implant an intrahepatic bile duct stent. They told me that besides taking Ursofalk, there isn't much else they can do. Surgery isn't an option because the tumor is measuring 36x66 mm. Aside from having more frequent bowel movements, I'm not in pain. However, my doctor informed me that there is metastasis in my lungs as well as a lymph node, and he essentially told me I don't have a chance at survival. I have a family, and one of them has dealt with cancer before, so I haven't actually told anyone about how serious this diagnosis is or even the specific details. Does anyone here have any positive stories from a similar situation? I should mention that the markers aren't increasing; they seem to be stable for now. I would be truly grateful for even a single piece of advice. Right now, I feel completely alone and abandoned by the healthcare system. I just want to live!

You absolutely have to seek a second opinion. Period. You'll likely need to settle this with a private oncologist—I'd suggest looking into Dr. Cepulic.
I wish I could give you something positive to hold onto or offer you some actual hope... 😢
...but let's be real, this diagnosis is brutal. You need to talk to your people and tell them what's happening. No matter what lies ahead, you cannot go through this alone without support and help.
I don't know if you're a religious person, but lean on Bog's providence. You know, when a person lifts their hands in prayer, Bog only needs to point a finger.
Live life and make every single day count. We're all in this together, but a car could hit any one of us at any moment. That’s how everyone should live, whether they're healthy or sick. Make a change in your life right now; this is the moment. Just take it one day at a time. That's how miracles happen and how true realizations come.
I'm here for you, even if it's just virtually.
Keep us posted.

Sam Kim12 said:This isn't about my own family—it’s for a friend. Her grandmother is in the terminal stages of uterine cancer with metastases, and there's no medical intervention left to try. The hospital wants to move her to hospice, but she’s resisting. Now the family is scrambling to figure out how to get morphine, but apparently, the GP isn't being helpful at all?! (I'm not sure what the disconnect is there). Is it actually possible to pick up morphine from a pharmacy using a private doctor's prescription if you present the medical history, just so they can ease her unbearable pain?

Look, an anesthesiologist can write a recommendation for Durogesic patches and Tramadol upon discharge. Make sure the family insists on this when she's being released; the staff is obligated to provide that plan. Beyond that, once she's home, they can visit a pain management clinic where a specialist can prescribe the therapy and titrate the dosages. Those specialists can also teach the family how to adjust the dose up or down as needed and how to combine it with other analgesics.
Honestly, given how advanced the disease is, I strongly suggest looking into inpatient hospice care. Most people simply aren't equipped to manage high-level palliative care in a home setting.

Robin Sanchez2 said:The combination therapy using Avastin actually worked for a while—the tumor shrank. But then everything stopped. After a few months of nothing, the latest scan shows things are getting worse again.

The Erbitux/EGFR line of treatment is off the table because the K-RAS test came back positive for mutated cells.

Who should I reach out to at Roche to buy Avastin? Do they only have a main office in Washington, D.C. (and if so, who is the right person there), or do they have field reps I can actually talk to? I’m coming from a small town, so maybe someone nearby is available.

The idea that I might be able to negotiate buying multiple doses is encouraging. However, like I mentioned before, the hospital oncologists refuse to write prescriptions for these reasons. Which private oncologists actually have the authority to write valid prescriptions here in the US?
(I'm looking around the Cleveland and California areas, or even Washington, D.C.)

It's clear to me that Avastin alone isn't doing much. My plan is this: if the insurance board rejects Avastin when paired with regular chemo (though they probably won't reject standard cytostatics), I'll try to source it myself and bring it into the hospital. Usually, it's administered last in the infusion, once the standard cocktail is finished.

Angela Wright, thanks for the info. Do you (or anyone else) happen to know anything about sourcing this kind of medication abroad or in neighboring countries? (Like Canada, Italy, Germany, Austria, Canada, Mexico, North Mexico, Canada, or the Czech Republic?)

Contact headquarters in Washington, D.C.; they will direct you to the right point of contact.
Get a second opinion from at least two other places. One should be abroad, and the other should be from a local private oncologist.
(Dr. Cepulic, Washington, D.C.). It is crucial that these opinions come from doctors outside the Medicare system to avoid any conflict of interest. With those medical opinions in hand, if they show that the indication for Avastin still stands, you can put pressure on the review board.
Forget about trying to buy drugs without a prescription or taking matters into your own hands "under the table"—don't even let that thought cross your mind.
At worst, you have Dr. Cepulic, a private practitioner, who can write your prescriptions and continue your treatment privately.

goldenpanther14 said:Hey everyone, does anyone know where I can pick up some medical oxygen for home use without needing a formal prescription?

Try reaching out to the American Hospice Friends Association; if they have stock, they'll definitely require you to present a documented history of the illness along with a specialist's recommendation.
But look, if you don't have a pulmonologist's referral, don't go playing games with this. It’s not as simple as just slapping a mask on someone's face and flipping a switch. You have to precisely calibrate the oxygen dosage based on the patient's specific needs and follow strict protocols, because an overdose can actually burn the mucous membranes and end up making the patient's situation much worse.

darkcrane14, if the doctor didn't spot a hematoma on the ultrasound when they should have, then it simply isn't there.
Look, pregnancy is its own beast entirely; everything changes, bodies react differently, and things just happen. That little bit of spotting you're dealing with might just be your body's version of "normal." It'll pass. Just take it easy for these next two months and you'll be back in the driver's seat before you know it. ��

darkcrane14 said:I'm doing better now, just taking it easy and hoping for the best. If God wills it, everything will turn out fine.

During my first pregnancy, I had some heavy bleeding around the 6th week—really intense, accompanied by cramps—but the baby was positioned correctly and the heartbeat was strong. The doctors couldn't find anything wrong; no hematomas, no red flags, nothing. They put me on progesterone, and things stabilized. It turns out I might have been carrying twins because I ovulated from both ovaries, and one embryo simply didn't take. Looking back, that was probably a blessing in disguise. I ended up having an emergency C-section at 28 weeks due to preeclampsia and HELLP syndrome. If I had been carrying twins, neither would have survived; my son weighed only about 2 pounds because my blood pressure issues messed with the blood flow. With twins, they would have been born even earlier and even smaller.
I learned then that just because something happens once doesn't mean it's destined to happen again with the next child. And sure enough, it happened again, but we managed to keep everything under control until the 34th week. I gave birth, and the baby was perfectly healthy without any complications.
Both of my kids are alive and thriving today.
Look, life is a total lottery. Stressing out over problems that haven't even manifested yet is completely counterproductive.
Be rational. Deal with the hurdles when—and if—they actually show up. 🙂

darkcrane14 said:Everything... I mean, I know it isn't certain, but it’s still eating at me, damn it. I'm just praying for some good news. If anything, the odds are probably slim.

Why?
You're at the very beginning of the pregnancy, and based on what you've told us so far, everything seems to be going perfectly fine.
It's going to be okay.

darkcrane14 said:Bloodloss—how long did yours last? I had some spotting this morning; just old blood and no pain at all. I read somewhere that Duphaston can cause that? But I didn't have any discharge for two or three days and then this happened... I don't know.

Look, the first trimester is basically a coin toss. If things start to go south and the body decides to reject the pregnancy, there isn't much modern medicine can actually do to stop it. All you can really do is take the progesterone and try to stay off your feet and avoid any heavy lifting or jarring movements.
Pick up some Elevit; it’s packed with everything both you and the baby need, especially right now when folic acid is critical for the development of the nervous system.
Honestly, what you're describing sounds normal. Just try to relax and stop putting so much pressure on yourself.
If you experience any heavy bleeding, get to the ER immediately.

darkcrane14 said:I have a new ultrasound scheduled for this Friday, and I’m praying they can hear the heartbeat. The leaking has finally stopped, thank Bog. What really scares me is how sometimes I don't feel any symptoms at all—like my breasts don't always ache with the same intensity. That lack of sensation terrifies me; I just can't wait until Friday arrives.

Everything is fine, believe me. 😉
Honestly, be grateful you aren't dealing with constant symptoms. There are women out there who would swap places with you in a heartbeat just to have some peace.

Just so you know, Avastin is manufactured by Roche, and they have a major presence here in the States. Pricing fluctuates quite a bit, but you're looking at $20,000 or more per dose. Usually, if you work out a deal with the company regarding the volume you're buying, they’ll actually donate one dose for every batch you purchase.
Of course, none of this happens without the green light from an oncologist via a formal prescription.
Avastin isn't meant to be a solo act; it’s designed to be paired with other medications. On its own, it just doesn't hit nearly as hard as it does when it's used as part of the full clinical protocol.