Posts by Angela Wright

crimsonfox26 said:Thanks.
So, should I be asking my doctor for a referral, or is it on them to suggest it?

They’ll likely bring it up themselves, but you can always just ask for a referral to see a surgeon.

steelpilot62 said:We’re heading in for an MRI in a week. Fingers crossed that things have shrunk at least a little, or in a best-case scenario, vanished entirely! Question: if it turns out radiation and Temodal didn't work—or only had a minimal impact—do they just keep going with Temodal monotherapy? I'm terrified they'll take away our only lifeline... because he actually tolerates it quite well. Thanks in advance!

No, they won't. If it fails to show results, it's undeniable proof that Temodal isn't doing the job, and continuing to poison someone with a drug that isn't working is just senseless. At that point, they move on to a different line of treatment, typically involving CCNU and Vincristine.
Generally speaking, it usually works because radiation is actually the heavy hitter against the tumor, especially when you pair it with Temodal—even more so if the tumor was surgically removed beforehand. If things look good right now and there aren't any neurological deficits typical of a tumor, you can expect a decent report. Even if the situation remains unchanged, a stable result is still considered a win, and they'll stick with the Temodal.
Try to face the reality here: with a diagnosis like this, everything we do is essentially a fight to buy more time. We want it to last as long as possible—at least until something more effective hits clinical application. If you let fear consume you, it will break you, and you'll start making mistakes you wouldn't otherwise make. I'm telling you this from experience, a kind of experience I wouldn't wish on anyone.

crimsonfox26 said:Hey there.

Last week, I went in for an ultrasound to check out this swelling. It’s been there for several years now—I got it after a fall. For years, it hasn't changed size at all.
The doctor told me it isn't a tumor, just an organized hematoma.

I haven't been able to see my primary care physician yet because they're on vacation, so I'm wondering if this hematoma actually needs treatment or if it should be surgically removed?

A surgeon is going to be your best bet for an answer on that.

Alex Thomas7 said:Hey,

I was wondering if anyone could give me some advice—feel free to DM me if that's easier. Which hematologist or oncologist has the most experience dealing with multiple myeloma? Specifically regarding diagnostics and everything else involved...

Thanks

Any hematologist will do, but you definitely want Rebro!

Amanda Miller69 said:Finally, we got all the results back saying everything looks fine and we just need follow-ups in 3-4 months.
The thing that’s actually bothering me is that he’s still coughing. Since he had pneumonia, could that be what’s causing it? There was no mention of any metastasis.
Is there a specific syrup or anything else that might help him?
Should I reach out to the oncologist again regarding regular check-ups, or should I just wait to hear from her?
And just for peace of mind, would it be a good idea to do a CBC and markers once a month for prevention?

Sorry for the barrage of questions, I just want to make sure I know how to handle things promptly.

When have you ever seen a hospital call someone just to schedule a follow-up? 🤦 😁
We’re always the ones calling them; honestly, you practically have to harass them whenever you need something. If I were you, I'd go ahead with those monthly markers.
As for the coughing, look, he went through major surgery, so there’s bound to be significant scar tissue and adhesions, which definitely causes irritation. An antitussive might help. Even a doctor at the Mayo Clinic could prescribe something for that.
I am truly relieved that everything turned out okay. Given how things were going, I was genuinely worried about the outcome.
Now, just get back to living your life and stay on top of the check-ups. I’d do exactly what you suggested.

Rachel Hernandez61 said:Advice and help

Six months ago, my mom had her uterus and ovaries removed because of a benign tumor weighing about 7 or 8 pounds. Apparently, my late grandmother dealt with similar issues, and my aunt did too.👎 When I signed up with a new doctor and mentioned this family history two months ago, she told me I urgently needed an pelvic ultrasound and a Pap smear. I've been trying to find a gynecologist in Washington, D.C. (all my previous doctors were halfway across the country), but every single person recommended to me is fully booked and isn't taking new patients.
I'm looking for recommendations for gynecologists in the Brooklyn area (I’m pretty anxious when it comes to hospitals and doctors; I’d ideally love someone thorough who is willing to actually explain my scans and results) so I can stay on top of this and keep everything under control.
Don't yell at me for dragging this out for two months; I've been juggling endless appointments with endocrinologists and labs trying to fix my hormonal system which has basically collapsed.🙂

I can recommend George Washington’s private practice. Since going to my insurance-provider OBGYN is incredibly stressful due to the crowds and the chaos, I opted for a specialist in private practice. She is an eminent expert, extremely thorough, and honestly just a lovely person who explains everything in detail. You don't get rushed out of her office until you've had all your questions answered calmly. I managed to cover the cost through a private insurance provider where for $67/month I get three specialist visits per year of my choice (I pick my gynecologist) plus some lab work, including a Pap smear, swabs, and ultrasounds. My warmest recommendation is to try solving it this way first, then look for a primary care doctor later. You'll always need one eventually for prescriptions or referrals.

Sarah Edwards94 said:First off, thanks for getting back to me so fast.
I’ll try giving them a call tomorrow, though I suspect they’d likely only step in if we were looking at a full-blown lawsuit involving a court case.
I'll let everyone know if this turns into useful info for anyone else down the road.

I'm going to write out my whole story and explain why I'm even digging into this on a different thread, since posting it here would mostly just be off-topic—and maybe I'm just someone who stubbornly believes in justice and righting wrongs. 🤔

Just go ahead and write it; if the mods think it doesn't belong here, they'll just move it to the right section.
And look, don't assume they won't help just because you aren't paying for a service. You can always file a private lawsuit and request specific expert testimony, which you'd fund yourself. If you actually win the case, the losing side is stuck with all the costs, including those expert fees, as far as I know. 😉

steelpilot62 said:Thanks for reaching out! If you don't mind, let's stick to first names. We've been applying DeepRelief, and he seems to be feeling a little better because of it. We’re currently managing things with both tablets and Phenobarbital as a preventative measure. My husband is incredibly strict about the dosage—he knows exactly how many pills he takes, and if I accidentally try to slip him a sedative, he'll toss it straight in the trash. He gets extremely restless, and any disruption to his routine sends him into a tailspin. In those cases, I just have to crush them up and hide them in his juice or yogurt. Is your mother actually able to sleep through the night? We are struggling big time with sleep; he just can't seem to catch any rest. We were over at the Mayo Clinic recently, and they prescribed some sleeping pills, so we'll see if that actually helps. Every time I vent to the doctors about how hard this is, they just give me the same old line: "It's just part of the disease process."😢

My mom didn't really struggle with that specific issue. Her main battle was with her perception of time. She’d go lie down right after lunch, and then when she finally got up, she’d head straight for breakfast—meds and everything included. She absolutely refused to believe it was actually the afternoon; I literally had to turn on the TV just so she could check the news ticker to verify if I was telling the truth or just trying to drive her crazy. Luckily, she didn't deal with any sudden mood swings or personality shifts; she just became somewhat blunt and dull.
Unfortunately, that’s just how the disease works. Personality shifts are an incredibly common part of the process.
I want to send you all the strength in the world to endure this fight. Every single time it takes something away from you or hits you hard, just remember: that isn't who you are. It’s the tumor doing that, not you. 😢

steelpilot62 said:Listen, everyone, his joints have started hurting incredibly badly. Yesterday, he couldn't even stand up on his own two feet. Is this being caused by the disease itself, the dexamethasone, or something else entirely? Could it be his liver acting up? I’m losing my mind here—I honestly don't know how to help him when he refuses everything. He won't even touch pain medication. Has anyone dealt with something like this before?

I think dexamethasone could be an option, especially if there’s significant swelling involved. Ibuprofen might offer some relief too—you can find it in certain topical massage gels, like the ones used in Deep Relief. When my mom was dealing with this, we arranged for her to see a physical therapist who set up a home therapy routine. It made a massive difference because the therapist would actually perform massages and guided passive exercises right there with her. Generally speaking, when you're dealing with swollen joints, simply elevating your arms and legs can help quite a bit.
He’s looking for home health assistance and wants his doctor to run a full blood panel and liver function tests, just to rule out any issues with his liver.

steelpilot62 said:Hang in there, everyone! Honestly, I can't tell if they truly grasp the weight of what they're facing, but part of me wishes they didn't. It would be so much easier for them if they were just blissfully unaware. For us, though, this is a total nightmare regardless.

I honestly think there’s a silver lining when it comes to brain tumors: most of the time, people aren't even fully aware of how bad things have actually gotten. Take my mom, for example. She was absolutely convinced she could just handle getting to the bathroom all by herself. If I wasn't watching her like a hawk, she’d try to make the trip alone and end up collapsing somewhere in the house. It got to the point where I had to call my husband to rush home from work just to help me lift her up, because trying to do that solo was an impossible mission. The same thing happened with her medication. She’d be taking a handful of dexamethasone and then two doses of Phenobarbital a day. At one point, I actually had to step in and physically stop her from swallowing a massive handful of Phenobarbital all at once. To her, it didn't matter—everything felt exactly the same. In my opinion, her awareness was only partially there... it really just all depends on which part of the brain is being hit.
Oh my God, just thinking about it is enough to make my stomach knot up all over again. 😢

Sarah Edwards94 said:Hi there,

I’m wondering if there’s anywhere in the US where I can submit a medication for testing—specifically, comparing two different samples. They’re supposedly the exact same drug, but they were sourced from different places.
Maybe at a private lab if I pay out of pocket?
I’ve been scouring the web for answers, but I can't find anything similar. Is it even possible to arrange this on my own just to get some peace of mind?

Thanks in advance for any help.

I'm sure it's possible, likely through a forensic lab. But fair warning: it's going to be an incredibly expensive endeavor. And when I say expensive, I mean eye-wateringly pricey. To run a deep analysis, you need specialized reagents to prove the presence of specific compounds, and those things cost a fortune—we're talking Saint Peter's breakfast money kind of prices...
Try calling Salat and the local coroner's office to ask around. If they can't help, they should at least point you toward someone who can.

Quote:... she doesn't have health insurance and isn't mobile enough to make it to a private doctor's office.

Roger Kern3 says: Can someone please tell me if anyone has experience dealing with home healthcare services regarding where to reach out? We have my wife who is ill in a Small town in rural America

Unfortunately, without insurance, you're essentially flying blind when it comes to coverage rights. Your best bet might be finding a private residential care facility willing to provide those kinds of services. I'd suggest running a Google search for local options.

ruggedmarlin2 said:Does anyone happen to know if there's any actual way to get Avastin as a treatment option? Any experiences? Anything at all? Thanks.

Avastin is an FDA-approved drug here in the States, and if it's covered under Medicare for a specific diagnosis within a certain treatment protocol, then yes, you can get it...

But look, if you want a straight answer, you need to be more specific about what we're actually talking about and where exactly the issue lies.

ruggedmarlin2 said:Bumping this thread...

It looks like absolutely nothing has changed over the last five years, which makes me wonder if there's actually any way to shake things up. Does anyone have any experience or insight that might help? Or maybe a specific advocacy group or non-profit I could reach out to for support? Thanks.

Look, Avastin was approved ages ago and it's already covered by Medicare for cases like metastatic colorectal cancer. In fact, when you're dealing with wild-type cells, using Avastin alongside Erbitux is considered the gold standard first-line treatment. So, honestly, I don't see what the issue is here. 🤷

EDIT: Give me your answer on the other thread; I'm suggesting the mods just lock this one down.

lonewolf3 said:So, if Thursday is the last day of my current pack, I’d start the break on Friday. But if I just pop the first pill from the next pack on Friday instead, I won't get my period.
I'll still be fully protected, though I might experience some spotting during that cycle.

I would take the break after finishing that second pack and then just carry on as usual.
That's my plan anyway.

Thanks for the help, everyone!!

Which specific brand are you on?

Look, if you just keep taking them on Friday, you can stop whenever you feel like it. You stay protected the whole time, and as long as you're actively taking the pills, you won't have bleeding. You can either finish the entire pack or just stop whenever it suits you and save the leftover pills for when you need them again later. (This logic applies if you're using something like Yasmin, which doesn't include those placebo pills found in something like Yaz).
Basically, once you do stop, you just take your standard break between packs—which is when your period usually hits—and then you jump back in on the seventh day like normal.

lonewolf3 said:Hey everyone,

I’ve been on birth control for years, but I’ve never actually done this before. My boyfriend is flying in from overseas next week. He’s only staying for five days, and of course, those five days happen to be right when my period is due. Even though I’m on the pill, my flow is heavy during that time, and honestly, I just don't want to deal with sex while I'm bleeding, uh...

Can I actually delay my period? Like, if I skip the placebo week and just start the next pack immediately, will that prevent the bleeding? Is that even safe to do? And will I still be fully protected against pregnancy even without taking the break?

Thanks for any advice.

You can definitely just start the next pack right away, and then whenever you actually want your period to show up, you can take your usual break then.
Everything you need to know should be right there in the pamphlet that came with your specific brand.
Personally, I once pushed mine back ten days when I was heading down to Florida for vacation, and man... I was a total wreck. I was super moody and basically driving myself crazy. But plenty of people do this all the time without losing their minds, so it’s definitely not a universal rule that you'll feel terrible.
My OB-GYN actually told me that biologically speaking, there isn't even a real necessity for that "break" week. Women could technically stay on them year-round; that little pause is really just a way to trigger a withdrawal bleed to manage the uterine lining.

David Reyes152 said:I’d like some professional opinions on these lab results. Honeybee IgE +2 (1.89), Vespula IgE +2 (0.86), Polistes IgE +2 (1.83), Hornet IgE +2 (0.82). How much of a health risk is someone facing if they get stung with results like these, or are these within the NORMAL range most people fall into? If a person with these test results suffers an anaphylactic shock from an insect sting—which I am QUOTING—could that be classified as a MILD PHYSICAL INJURY that then escalates into an ORDINARY SERIOUS PHYSICAL INJURY due to the allergy compensation claims? I run a bee farm that is fully permitted and compliant with all local laws and regulations. Now my neighbor is trying to push me out and is suing me in municipal court for damages, claiming he was allegedly stung by THREE of MY bees. Thanks.

Honestly, this sounds more like a legal question to me...
...and frankly, I don't see how he's going to prove those were specifically *your* bees 🙄 In that regard, you might as well just toss those lab results in the trash regardless of what they show and instead spend your money on an EpiPen or an adrenaline shot to carry around in case some bug lands on your forehead... Good grief, the types of people walking around these days 🤣
If you actually end up losing this lawsuit (which I highly doubt unless the judge is crooked), please let us know if you have the energy, because that precedent would be revolutionary—imagine the drain on the US budget if every asthmatic person suffering "serious injuries" during ragweed or poplar season starts suing for everything

BTW, the only reliable way to confirm an allergy is through antibody testing. Skin tests are unreliable and really just serve as a general guide before you pay for the expensive genetic antibody tests that actually provide definitive proof of an allergy.
Sleep easy; the guy is clearly a conspiracy theorist just looking to grab some cash. I’d bet money on it—I can smell that mindset from a mile away. I don't believe this will ever make it past the first hearing. If he wants to sue someone, he should sue the state; they're the ones who issued your permits. That's how he should handle it... it's not your fault. He should be questioning the decision of the government agency that granted the permit in the first place. He's suing the wrong person.

Emily Hayes said:Actually, I’m asking both because I want to hear more perspectives. We had a colon tumor removed, Dukes B. Recovery from the surgery is going smoothly, but we don't want to miss any steps and end up regretting it later. That’s why I’d love to take the patient to a high-quality oncologist for further follow-up care.

Rebro- Dr. Santek
Private- Dr. Cepulic

Emily Hayes said:Hi everyone.

I'm looking for a recommendation for a solid oncologist in the Washington, D.C. area.

Thanks.

Private practice or hospital-based? And what specific diagnosis are we talking about?

Amanda Miller69 said:My father-in-law is doing okay right now, if I dare say so; he's walking around, eating, and staying on top of everything we've laid out for him... He had a dizzy spell the other day which definitely spooked me, but since then, the dizziness hasn't come back. Let's just hope this stability sticks.

Have you guys followed up on those shadows on the lungs yet?

cosmiclynx14 said:Yeah, the first report showed that, but it said everything looked benign. Now this latest one uses such heavy language—"osteoplastic metastatic changes"—and it’s really freaked me out..
And Dad keeps saying the doctor told him it’s nothing... I just don't get it..

Anyway, thanks.. we'll see what happens, we're sending the results over to Germany..

Did the radiologist actually have access to that previous report when they performed this new scan?
In my opinion, the smartest move is to present both reports for a second opinion, which is exactly what you're doing anyway, right?
Fingers crossed it's nothing serious.