Posts by Angela Wright

Amanda Perez42, I’m honestly not sure why your doctor thinks you're at such a high risk for developing any kind of cancer based solely on genetics. As far as I know, prostate cancer isn't nearly as tied to specific genetic markers as things like colon or breast cancer are.
Just stick to an annual OB-GYN visit with an ultrasound or mammogram, and once you hit 50, get a colonoscopy—that should cover all your bases. It wouldn't hurt to grab a yearly physical with an abdominal ultrasound too, just to stay ahead of things.

I honestly think people go overboard when they start demanding a prescription for every little thing. It’s common sense—everyone knows what Fact is used for, and it’s not like people are suddenly terrified of using it just because they’re feeling a bit too euphoric. Nowadays, it feels like you need a doctor's note and a signed permission slip just to deal with basic bathroom issues.

Casey Booth3 said:Your dad is absolutely entitled to get a medical wig through his insurance; he just needs to demand it from his doctor. In the meantime, a baseball cap works perfectly fine. Honestly, wearing a wig can make your head sweat like crazy, so a hat is actually more comfortable—but since this is such a huge shock to him (likely because he's self-conscious about people staring), let him fight for that socialized coverage. If you decide to buy one out of pocket, be prepared to pay a premium, though you'll definitely get better quality than the subsidized stuff . Just look it up on Google.

He can always pay the difference at specialized shops that take Medicare to upgrade to a higher-quality wig.
I remember one shop that carried hairpieces was located right over in a mall near downtown Chicago.

Betty Kim25 said:Looking at the big picture, I’m starting to think circulation might be the real culprit here rather than just allergens (though I’m not ruling those out, and I can work on them). How can I actually boost my circulation naturally, without relying on meds? I tried using some herbal circulatory tea from a local wellness brand. It helped a little bit, but as soon as I stopped, my hands and feet went right back to being ice cold.

Keep moving as much as possible and watch what you eat, but it sounds like you're already doing all that. Sometimes genetics just hands you a bad deck and there isn't much you can do about it.
Maybe try using a high-pressure massage showerhead right before bed, and then again in the morning.🤷

steelowl35 said:Does anyone happen to know the exact difference between these two? My local pharmacist mentioned that Acida might be too harsh for compresses, especially since I'm dealing with a bruise from a minor surgical procedure and some stitches. They suggested using Rivanol instead. However, during my follow-up at the hospital, the medical staff actually recommended rinsing the area with Acida. I definitely trust the doctors' advice, but I was just curious if anyone here could clarify the specific distinction between them.

It comes down to the chemical composition. When used at the right concentrations, both serve the exact same purpose. Personally, I’d go with boric acid water; Rivanol has such a heavy pigment that it leaves your skin looking yellow.
I’ve noticed lately that pharmacists seem to be constantly contradicting what doctors prescribe. It’s like they have to document every single thing and stamp everything just to get anything done. I don't get why there's so much unnecessary drama over this specific case. 🤷

Ask if you can take aspirin. It thins the blood, which helps improve circulation overall.

Cellulite is basically just a byproduct of poor lymphatic drainage, which is inextricably linked to how well your blood is actually circulating. If you’re constantly dealing with ice-cold hands and feet, that’s a massive red flag that your system is sluggish and could be the root cause here.
Why not try treating yourself to a professional lymphatic drainage massage for both your face and body once a month? Just give it a real shot and see if you notice any actual progress.
Beyond that, I’d strongly suggest getting a full hormonal panel done—I'm talking everything from your pituitary and adrenal glands down to your thyroid and ovaries.

Here I am again, but this time it's after my second Imperial Cut in the exact same spot. It’s been about two and a half years since the last one, which was just enough time for the sensation to start coming back—though, honestly, it wasn't quite what it used to be. I’m guessing once you've severed those same nerves twice, they aren't exactly going to knit themselves back together perfectly. Am I being realistic here, or should I still be holding out hope?

I know exactly how you feel. I’ve been in your shoes, and honestly, choosing an alternative route was the single biggest mistake of my life. I regret letting my mother go down that path instead of just organizing the best palliative care available and reaching out to more specialists.
You should try sending inquiries over to the Dan Ferber Institute in Houston. I’ve heard second-hand from someone who had exhausted every possible option—verified by multiple experts—that they still offered five different alternatives, one of which was even a clinical study based in Germany.

You could try asking for a private MRI at Sun, for instance, though I honestly can't wrap my head around why they wouldn't just redo the scan when the entire medical board has already agreed it’s necessary.

As for alternatives—specifically those "miracle" preparations people swear by—you are stepping onto incredibly dangerous, slippery ground. How can you be certain about the exact ingredients, how the dosage is managed, who is monitoring the patient's vitals, or who takes the fall if things go south? There is no way to guarantee there won't be a lethal contraindication with her current therapy. Don't forget that everything a person ingests has to be processed by the liver. In my mom's case, any extra strain on her system could be catastrophic and send everything spiraling downward. This forum is littered with stories of severe cases where patients were sent home, and instead of seeking out clinical trials or second opinions from major US hospitals or specialized clinics abroad, they turned to these "experts" who staked their reputation on unproven methods. Usually, those stories end in tragedy, often with people suffering in agony.
Be smart. Don't gamble with unverified methods that lack scientific backing.

Jessica Adams7 said:Dear vividsailor7,
I’d love to give you more details... but honestly, the doctors here can barely get a straight word out of them.
Right now, the diagnosis looks like leukemia.
The biopsy was done, the bone marrow puncture is finished—now we’re just stuck waiting on the results... meanwhile, my father... oh my God...
God help us.
Thanks for asking. I appreciate it.
Best,

Ten days is plenty of time for someone pursuing a PhD. Don't let them brush you off; demand clear answers and be assertive. It's your right.

I’m not entirely sure which specific facility my dad is being treated at, but when it comes to hematology, the specialists here in the States are top-tier. We have world-class hematologists and some of the most influential medical associations in the world.
I don't know what the exact issue is or where things specifically went sideways, but if the treatment is in the hands of a conscientious professional, I have no doubt it will be handled correctly.

Linda Ortiz49 said:Thanks... I was under the impression they were doing a CT scan. At the beginning, all they did was an abdominal ultrasound and some lung imaging before surgery; they didn't do a scintigraphy then or now, though the doctor added blood markers yesterday. Once she recovers a bit from the radiation, we’ll head to a private clinic for more comprehensive testing just so we can finally have some peace of mind.

Get a bone scan instead. A PET scan isn't exactly "harmless"—it hits the body with radiation, and there’s a specific waiting period you have to respect between two such procedures. Plus, the scan reacts by lighting up anywhere there's cellular activity, which includes everything from old bruises to inflammation. If any metastases do pop up, the blood markers will pick up the growth first, and *then* you'd move on to a PET. If you run one now and the markers spike again in a few months, you might be blocked from getting a follow-up too soon because of the radiation interval. Don't forget that X-rays and bone scans involve radiation too!
I know there's a sea of negative stories out there that make it hard to trust your doctor, but keep in mind that most experienced physicians don't feel the need to broadcast their successes like those sharing horror stories do. If you want high-quality medical care, it absolutely requires having confidence that your doctor actually knows what they're doing. If that trust is broken for whatever reason, it's better to find a new specialist, because you won't get anywhere good trying to force a relationship that isn't working.

Linda Ortiz49 said:Hi everyone. I posted here about 10 months ago when my mom was diagnosed with breast cancer. She’s finished six rounds of chemo plus radiation, and since the tumor is hormone-independent, they're wrapping up her treatment. We were expecting a PET scan once everything concluded, but her oncologist suggested a mammogram, chest X-ray, abdominal ultrasound, blood work, and a gynecological exam instead. When Mom actually asked about getting a CT, the doctor just gave her this blank stare... I'm wondering, is it actually possible for those tests to catch any potential metastases?

If there weren't any metastases at the onset of the disease, they won't order a CT. It's enough to monitor markers regularly and repeat the screenings mentioned above—though if it were me, I'd also make sure to get an ultrasound of the axillary area.

Casey Booth3 said:Just a little bit of oncological advice—patients actually DO have a right to a wig through their insurance, provided you aren't in a massive rush and need one this second. Just ask your primary care physician; they really should have mentioned that to you already. Don't go wasting your own money when you've already got enough medical bills piling up! Cheers.

That’s spot on. Insurance usually covers the cheapest options, which honestly aren't great quality. Back in 2006, we picked up my mom's wig at a specialty shop near Vatican City; they had a contract with Medicare, so we just paid the difference to get her something a bit higher end.

mistyjackal842, I’ve got a bone to pick regarding your posts where you drag Johns Hopkins Hospital through the mud. Look, what happened to redwolf4 was undeniably horrific and absolutely warrants some doctors being kicked out of their medical boards, but your posts overall paint this entire hospital in such a dark light that it just isn't fair. There are still plenty of competent, top-tier physicians working there under terrible conditions—conditions that often prevent them from providing the absolute best care possible for their patients. By spreading this much negativity, you're unintentionally putting people in a really precarious spot; they read your claims and start second-guessing their own doctors, which is a complete disaster, especially when someone is dealing with a cancer diagnosis. A situation like what redwolf4 went through isn't some isolated phenomenon unique to Johns Hopkins; things like this happen every single day all over the US for a million different reasons. I think it would have been enough to share what happened and how you're handling it moving forward, without needing to smear the whole hospital in such a gruesome context. I hope you get where I'm coming from and don't take this personally. 🙂

steeleagle152 said:It isn't a matter of "can we" versus "can't we," it’s a question of whether they actually want to. My dad is a pretty wealthy man, and we aren't blind to that fact, but being well-off shouldn't mean we just let him suffer or give up on him. These doctors are essentially just punching a clock; they're working because they have to, not because they care. It feels like they're just going through the motions without any real empathy.

Sent from my Android device using Reddit

The reality is that once someone is admitted, they basically become a permanent patient of that specific hospital system. Getting them transferred elsewhere is an uphill battle, mostly because administrators are always looking for ways to cut costs and keep things in-house.

Ashley Murphy said:Which Dr. Herceg?
I actually have some pretty recent experience where he made a massive "rookie" mistake (unless he was just trying to save the hospital budget 🤷)

I really hope that isn't the guy...

Davorin.
He’s definitely not the friendliest guy to deal with sometimes, but he and Santek are highly specialized when it comes to rare tumors.

slypuma said:Angela Wright, thank you so much. Honestly, I’m terrified of chemo too because from everything I’ve been reading, the success rates just don't seem that high... that’s why I’m asking around and doing my homework before we dive headfirst into all of this. My dad is completely out of it right now and isn't really able to help us make decisions, so my sister and I are basically running the show. Anyway, we’ll just give Šantek a call; we don't really have any other options left... I just can't bear the thought of her being absolutely wrecked by chemotherapy for nothing, especially since she's already resistant to the idea. As for the folks in Germany, I'm really hoping for a fast response. Can I ask you one more thing? How does that Jondelis actually "work"?

http://www.cancerresearchuk.org/canc...gs/trabectedin
http://en.wikipedia.org/wiki/Trabectedin

slypuma said:hmmm, I can't find Dr. Šantek's number... can anyone help?

Unfortunately, I don't have his personal cell anymore, but if you call the oncology department at Mayo Clinic, you should be able to get through to him. Just tell them who referred you and explain that you were advised to consult with Professor Šantek regarding the next steps.

EDIT: sent you a DM

slypuma said:Angela Wright, we met with Dr. Vrdoljak and he teamed up with my mom's oncologist to set her on the AC chemo protocol, which should kick off this Thursday. Mom is taking beta-glucan and some homemade aloe vera concoction—is there anything else she should take to help mitigate the side effects of the chemo? I'm honestly terrified of this treatment because I have no idea what to expect once it starts... what kind of side effects are we looking at? We sent an email to Dr. Šantek and a doctor in Germany this morning. Now we’re just waiting to hear back.

I'll give you my humble layperson's take, based on having actually met Vrdoljak, worked alongside Šantek, and dealt firsthand with the complexities of rare tumors and sarcomas:

Look, all respect to Dr. Vrdoljak for his expertise, but when it comes to rare tumors and sarcomas, I don't view him as any more competent than Prof. Šantek or Dr. Herceg over at the Mayo Clinic. Those are the only two doctors who actually specialize in these kinds of diagnoses, and frankly, it feels totally backward that people are still getting shuffled through local clinics only to end up exhausted and desperate at the Mayo Clinic when there isn't much left to be done.
As for sarcomas, there's a standard rule: you operate on everything you possibly can, and if there's a specialized biological drug available, like Pfizer, you use it. Standard chemotherapy, by itself, is practically useless against sarcomas. It’s just a hard reality.
You really ought to try calling Šantek directly; he isn't exactly the type to sit around refreshing his inbox all day.
The doctors in Germany will probably get back to you soon. Personally, I wouldn't touch any experimental or "off-book" protocols until those specialists at the major sarcoma centers weigh in.
Regarding Vrdoljak, I've walked away from several encounters with the impression that behind that polished, eloquent exterior lies a very pragmatic individual who will only step up if it doesn't mess with the hospital's bottom line. What really bugs me is how he won't just give it to you straight about the situation or suggest seeking treatment abroad if that's truly the best option. In my opinion, there is absolutely an indication for Pfizer here, but it's cheaper for them to prescribe something low-cost so they can later claim, "...well, we did everything in our power..." if you catch my drift.

If God forbid a sarcoma or some other heavy, rare diagnosis ever hits me or someone close to me, I'd likely sell everything I own to go get treated at a top-tier specialist center outside of the US, as long as our healthcare system stays the way it is. Short and sweet—that's my stance.