Posts by Angela Wright

Susan Harris89 said:I'm wondering if everyone diagnosed with a malignant tumor is entitled to a PET scan, or if it depends on the stage and other factors. I have ClarkIII Braslov ii melanoma; my markers look good, but honestly... who knows?

I went to the Melanoma Center at the hospital in Washington, D.C., and I wasn't exactly thrilled with the experience, though that was a different occasion.

Is an oncologist required to give me a referral for a PET scan if I ask for one? Does anyone know?

Also, does anyone know all the various markers used for melanoma?

I know I'm asking a lot, but I have checkups tomorrow and I'd love to have some answers before I face them.😁😁

On a side note, my heart goes out to everyone who has dealt with the loss caused by this terrible disease. I know exactly what that feels like because I lost my brother to colon cancer when he was only 34.

As for helpful tips, there is nutritional supplement food for patients that looks a bit like chocolate milk called FRESUBIN or ENSURE (similar products exist from other brands). You can get these via prescription—ask your doctors, because a lot of them aren't actually aware of them. They can be bought over the counter too, but I think they cost about $5 a bottle then.

I assume you're asking about getting a PET-CT. If your condition is under control, this scan doesn't really make sense; it's incredibly expensive and is primarily used to determine or monitor a treatment plan, especially for patients with diagnosed metastases. Besides, these scans often pick up tiny, benign cellular changes that end up causing people unnecessary, irrational anxiety. In your case, standard follow-up CT scans should be more than enough to monitor your status. You should discuss all of this with your attending physician, since they are the ones managing your case. That said, any oncologist can prescribe a PET-CT, just like any other scan—unless you go to a private clinic, in which case you'll be footing the bill yourself instead of having Medicare cover it.
Regarding the Melanoma Center, you aren't the first person to have a bad experience there. Honestly, it’s a disgrace that a place operating at that level is even called a "center." ☕

slysurfer14 said:That's a lie. Even if you have a referral, they'll direct you wherever they want. Emergency rooms are supposed to be divided by district, but the ER is the only department actually following those rules...

Then you've got oncology patients, who are the glaring exception here. ☕

David Bishop said:Can anyone point me toward a place where I can get Glivec 400 mg (from Novartis) at a decent price for a GIST diagnosis?

That medication is actually covered by Medicare for GIST indications.
According to Medicare:
For the treatment of adult patients with unresectable and/or metastatic malignant gastrointestinal stromal tumors (GIST). Treatment is approved by the Hospital Drug Committee upon the recommendation of an internist oncologist or a radiation oncology specialist at major medical centers, for a duration of up to 6 months.
Besides Glivec, Sutent is also registered for this specific indication, but it doesn't look like they've added it to the coverage list yet. At least, I couldn't find it when searching through the Medicare database.
http://www.medicare.gov

Your paper records aren't actually lost; they’ve just been migrated to a digital format since Medicare rolled out their new integrated IT system for primary care. Basically, all your info is tucked away and securely stored in a virtual file.
To find out your blood type, just grab a referral from your primary care physician for those specific tests—which, by the way, is totally free and fully covered by Medicare.

jadesailor14 said:It’s true they kick you out like that, but they aren't exactly in the right.
My internal reaction is always just, "Oh really? Well then, why don't you show me—or at least tell me where it says that exactly in actual law? I'm talking about legal statutes, not some random internal policy from a hospital administrator."
Supposedly, those rules regarding local municipalities only apply to emergency services, but even then, nobody ever sent me home when I accidentally showed up at the wrong hospital.

Give me a break, honey; not everyone is as cynical as you and me.😁
What’s an old man or a grandmother supposed to do when the doctor treats his word like it's the freaking Bible?

Unfortunately, in practice—take Washington, D.C., for example—there’s this rigid division based on city districts. I’ve actually heard stories where people were basically turned away from their way home, being told, "You don't belong to this hospital's jurisdiction because of where you live."

Rebecca Cook7 said:What if I switch doctors and they won't start a fresh file? They want my old records, but I don't want my history following me around. Do I have any right to demand a clean slate? And what actually happens to the old files? Do they just get tossed out?

Physical paper files are a thing of the past. Nowadays, everything is handled through a centralized digital system where all patient data is stored in massive databases. You can't just wipe those records clean. When you decide to switch providers, you head to the new family doctor you actually want to see. As long as they haven't hit their maximum patient capacity, they’ll issue a formal request for the transfer. You take that over to Medicare, they process it, and once it's approved, you're set. The transfer of data—your "digital file"—happens internally within the system. Honestly, it's for the best; you shouldn't have to deal with the awkwardness of visiting your old doctor just to lug a heavy folder from point A to point B.
Basically, once Medicare gives you the green light, you're officially under your new doctor's care, and that's the end of the matter.

Nicole Sanchez43 said:Hi everyone,

Yesterday, I arrived in Washington, D.C. with my 16-year-old daughter. She’s been diagnosed with cancer, but they can't pinpoint the primary tumor.
It has already spread to her spine and lungs.
With three cervical, two thoracic, and five lumbar vertebrae damaged, she isn't even allowed to get out of bed.
The doctor was polite enough, sure, but he was incredibly clinical—completely detached.
To put it bluntly, he basically threw it in my face that there’s no point in putting in much effort because there's practically no hope left.
Naturally, that absolutely crushed me.
I asked about getting psychological support for my girl, but he shot that down immediately, claiming he "didn't see a need for it."
My vision went dark, and I had to bolt out of that hospital; I refuse to let my child see me fall apart.
It feels like I brought a dog into this instead of a human being—a child who was just starting to actually live her life.
This is all completely new to us. We only found out about the illness two weeks ago, and honestly, I have no idea what the next step is.

Please reach out to the Red Cross. You will find all the support you need, including psychological help for both you and your daughter.
Once you click the link, look at the phone numbers on the left side of the page. Get in touch with Mr. Zoran Mitrović. He is an absolute saint and will help you. He walked his own heavy cross losing his son, but that experience only gave him more faith and strength to lift others up.
Hang in there—you can fight this!

Samuel Reed5 said:I lost my patient today... 😢
Wishing you all the best, everyone.

Please accept my deepest condolences.😢

Robert Grant84 said:The MS CT showed some shadows on the adrenal glands and in the lungs, so now they want to run a PET CT (around 14 $0.00 ?). They’re assuming it’s nothing, but they want to be absolutely sure before they commit to chemo or radiation. Is there any way to get this covered? As far as I know, there are only three private clinics that do this, and none of the public hospitals

You can get a PET CT done using a referral at Medicol since they have a partnership with Medicare, so it won't cost you anything.

Frank Booth9 said:Thanks for the advice 😁
Yeah, she even took some because her PCP won't prescribe anything stronger. But that's a whole other issue. The guy honestly doesn't seem to care about his patients at all.

A GP isn't qualified to be handing out heavy-duty meds. You need to ask for a referral to a pain management specialist. If they give you the runaround, file a complaint here:http://www.hhs.gov/complaints

Susan King6 said:Oh, please. You’re always jumping straight to the absolute worst-case scenario, which is statistically about a zero percent chance of happening. I mean, if her heart was actually that weak, she would've collapsed the second she tried to run for a bus or a subway without any Tramadol in her system anyway.

I’m not "choosing" the worst-case scenario; I’m just looking at how life actually works. The difference between us is that I recognize reality while you’re still playing pretend. Let’s be real: we don't control everything in this life, which is exactly why we have to manage the variables we *can* control and prevent the disasters we see coming. That's just common sense.
But then again, that kind of foresight usually comes with actual maturity. Unfortunately, some people never quite reach that stage.

@Frank Booth9
It sounds like your mom is dealing with chronic pain here. The smartest move is to have her primary care doctor get her a referral to an anesthesiologist. They can dial in the exact medications and dosages needed to actually neutralize that pain properly.

Susan King6 said:Oh, please, stop freaking out. Tramadol isn't even close to being some massive, heavy-duty opioid; it just happens to hit those opioid receptors, blah, blah, blah...
Mom just got a little too relaxed, and once she starts coming down from it, she'll be just fine. 😁

Don't be rude or disrespectful.☕
It’s pretty obvious you've played doctor a few times if you're acting this informed, buddy. But since this woman took a dose like that for the first time without any medical supervision, nobody is more qualified to predict the fallout than an actual doctor. For some people, even a tiny dose can cause heart failure.
People love to self-medicate and act like they know everything, waving their hands around like experts.

Frank Booth9 said:Actually, I am an expert. I'm a pharmacist, but my mom just won't listen to me...
And look, vomiting won't help anything since the pills have already been absorbed. At the ER, they'd probably just watch her.

I can give her something to counteract the effects.
It honestly surprises me that as a pharmacist, you aren't already familiar with everything I mentioned, nor do you realize that some medications she might be taking could have serious contraindications with Tramadol and cause major issues.
What's the big deal with calling 911 and asking for professional advice?

Frank Booth9 said:I'm not calling 911. My dad is at work right now. I don't think the vomiting really matters much. Just hoping this passes...

Do whatever you want, but if I were in your shoes, I’d be making that call. Neither you nor I have the medical training to sit here and guess whether this situation is going to stabilize or spiral. Your mom is being completely reckless here, and you need to be smarter about this—call 911 and at least get some professional advice. Don't play games with someone's life!
It would actually be a good thing if she could throw up. If you happen to have activated charcoal at home, give her some.

Frank Booth9 said:My mom's dealing with hip issues and gets hit with intense pain quite often. She did something I really can't stand, though—she complained to this distant relative of hers, and of course, since a pill works for him, he suggested she take some too. He even told her to take two tablets. So, she popped two 150 mg Tramadol ER pills all at once... Now she’s dizzy, nauseous, looks pale as a ghost, and says she's itching. She feels terrible. Sure, the hip pain is gone, but what can we do to ease these side effects? (She's refusing to go to the doctor...)
Will this settle down on its own?
Thanks in advance for any help

Call 911, right now! This could be extremely serious because she wasn't prescribed this medication, so there is zero way to know if it's even safe for her body type or condition.

Honestly, what that relative did is basically a criminal act involving the distribution of controlled substances. Tramadol is a heavy-duty opioid that requires a prescription for a reason. Messing around with that kind of stuff is a serious offense that can land someone in prison.

Grace Flores14 said:All the talk and good times are gone. 😢 She’s mostly just sleeping lately, and during those brief moments when she is awake, she’s hallucinating—struggling to recognize faces, rambling incoherently, things like that. It feels like we’re reaching the end. 😢

It breaks my heart that it’s come to this. 😢
Stay by her side as much as humanly possible and keep talking to her. Even if it feels like she doesn't know who you are, I truly believe there is still a part of her that can sense the essence of what you're saying. Keep telling her how much you love her and how much she means to you. When life finally reaches its conclusion, you realize that love is the only thing that carries us through our entire existence; it's why we live. If we have loved deeply and shared that love fully, then our lives have been complete and meaningful, no matter how short they may have been.
I'm sending peace and strength to you and your family.

redharbor9 said:And even if they do, the real question is whether it actually qualifies as OCD—does it truly meet the diagnostic criteria? I’m currently working in therapy with a kid diagnosed with ADHD, and they aren't even close to that. But here's the thing: once a poor kid gets a label, everyone starts viewing them solely through that lens. They start living up to the diagnosis, and then things just spiral out of control. In my view, a diagnosis should simply be a tool to understand what kind of behavior to expect from someone, not a complete definition of their entire being. Unfortunately, reality works differently. Personally, I wouldn't go raising a child based on a diagnosis if one hasn't even been officially made...

I think it’s far more dangerous when a parent—someone without any formal training—decides on a diagnosis for their own child. Professional expertise carries much more weight here, especially nowadays when there is so much we can achieve through specialized rehabilitation for children with behavioral disorders.

velvetmarlin17 said:Yeah, my mom. We’ve actually managed to keep things under control for two years now without relying on chemo or heavy meds. Her markers have been steadily trending down. She feels great, though she still hits the panic button whenever she feels even a tiny bit of discomfort. But honestly, at 66, what isn't going to hurt occasionally? 🙂

That’s fantastic.😍
Could you share her exact diagnosis and everything you've done to manage it? I think people in this group could really use some more success stories to look up to.
I’m also a huge fan of d. S. Schreiber’s book. I’ve mentioned it here before and highly recommend it. I just wish it had been around back when I needed it most; it would have saved me from all that aimless wandering and helped me focus on what actually matters.

Has the child received an official OCD diagnosis yet?