Posts by Angela Wright

wanderingcobra76 said:There’s really nothing you can do but wait. 🤷
It’s a totally standard thing; it took about a year for my sensation to finally come back.

As for those other "side effects," during that 1.5 to 2-gram phase, I used to get these agonizing stomach pains from adhesions—I actually ended up in the ER once because they suspected appendicitis.

Great. 🙄
But I won't play the victim; I handled it well enough that it stayed manageable, especially considering what I went through.

So, here's the deal—I’ve completely lost sensation on the right side above my scar, covering about 8 square inches. I’ve been doing some digging online and realized this can happen when a cut is deep enough to nick certain nerves, but honestly, I haven't found many people sharing their actual experiences with this.
Does anyone have any advice? This feeling is just... surreal. It’s incredibly frustrating because sometimes the area feels like it's itching intensely, but when I try to scratch it, there's absolutely nothing there. Just dead space.
Is there anything at all I can do to try and get some feeling back? It’s an awful sensation. Everything felt perfectly normal just four months ago.

vividotter7 said:I already saw the surgeon. He looked over the results and brushed it off like it was nothing. Still, I’m uneasy because I overheard some doctors mentioning an Achilles tendon issue and the possibility of surgery. That’s what’s sticking with me. This morning, the surgeon just skimmed the report, cleared up the gray areas, and insisted everything will be fine and no operation is necessary.

Look, the guy did exactly what he was supposed to do by telling you to see a surgeon if he thought more work might be needed—that’s just being professional and following protocol. He referred you to a specialist, and the specialist checked you out and said you're good to go.
If you aren't feeling confident about that answer, then go find another surgeon and get a second opinion.

Listen, get yourself to a surgeon immediately. If there’s a tendon issue in your leg and you don't handle it right away, you're looking at permanent damage. Don't put any stock in those doctors who act like they've got a monopoly on all medical knowledge; if a physician actually refers you to a specialist colleague, that’s usually the sign of someone you can actually trust.
That plastic thing you're feeling is most likely just a drain, installed specifically to make sure any potential infection or buildup gets flushed out. Having the drain pulled is definitely not a walk in the park, but I promise you, it’s nothing compared to the agony of the actual surgery or the injury itself—and it'll be over in a heartbeat.

Kimberly Wright said:my mom passed away yesterday

Honey, I am so incredibly sorry for your loss. Please accept my deepest condolences.😢
Hang in there and keep staying strong—stay the brave woman your mother raised you to be.

feralridge3 said:w

For these past three years, I never once looked at my diagnosis and thought of it as something "ugly." 🙄
I haven't given much thought to how heavy this diagnosis actually is—even though a brain tumor is objectively a massive weight to carry—so you bringing it up in such a gross way really caught me off guard. 🙂

We went over this ages ago, specifically back on the association's forum, but it looks like you’ve wiped that from your memory. Your issue was exactly that: in the moment, you weren't truly grasping the gravity of what you were facing, and as things took a turn for the worse, you resisted reaching out for help.
Look, if I made you feel "gross," that wasn't my intention. I honestly believed—just like wanderingcobra76 did—that you had become far too comfortable with your own worst enemy.
Hang in there; stay just as gutsy as you are and keep fighting for that win.

feralridge3 said:Look, honey, 😉
it just clicked for me now 🤔 once all the pieces finally settled in my head at the right moment and formed a coherent thought. 😁
The paperwork mentioned chemo, but during our talk, they were definitely talking about capsules, 🙄, I remember it clearly because I explicitly said I can't even look at capsules anymore, let alone swallow them... so, yeah, you get the idea. 🙄

I'm pretty sure the CCNU comes in capsule form.

feralridge3 said:Geez, nobody told me my diagnosis was supposed to be this ugly. 🙄

Are you sure about that? I honestly thought I was the one who had already broken the news to you.🙂
Listen, if it’s malignant, the diagnosis is always going to be ugly. But that’s why there’s treatment. Everything else in life is basically a gamble anyway. Now you’ll find out if it actually is what we think. If it is, you fight, and you find a new path toward remission.

feralridge3 said:Thanks for such a thorough answer; everything is crystal clear now. 😢
Not again. 🙂

We're talking about an anaplastic ganglioglioma. The tumor was completely removed three years ago. Then, nine months later, there was a recurrence, which was also fully excised. Since finishing Pfizer chemo back in November 2009, I've been in recovery. Everything was finally trending upward—so what happens now?

I forgot to mention, they send me in for follow-up MRIs every six months.

Look, even if it feels awkward or heavy, you absolutely have to ask about Pfizer again. You responded to it the first time, so there is a real possibility that repeating the treatment could work. Besides, you managed to cover the costs last time too. From what I recall, you dealt with a recurrence while still undergoing the initial treatment.
Hang in there; this doesn't mean it's over.

feralridge3 said:Should I be worried? 🤔

The MRI looks okay—I've already seen the neurosurgeon, the neurologist, and today an oncologist who confirmed there aren't any signs the tumor is coming back, but...

There are elevated choline levels compared to NAA on the spectroscopy. I’m recommending a follow-up brain MRI with spectroscopy. If the spectroscopic findings come back positive, I would recommend chemotherapy following the VCR/CCNU protocol.

😕

I don't see what choline has to do with the brain. 😕

Kate Reed63 said:crimsondrifter2 - I am so sorry for your loss. 😢

I need some advice if anyone has experience here. My father-in-law was diagnosed with stomach cancer. He hasn't had surgery yet, so they're looking at chemo, but four days ago he suffered a minor stroke that left him with some weakness in his left leg. Given he’s 69, we're wondering if someone in that condition can actually handle chemotherapy.
Thanks!

It all comes down to his overall health. Honestly, I'm worried he might not be able to handle it.

James Bennett94 said:Hey, does anyone happen to know any of the surgeons over at MD Anderson Cancer Center? My mom needs surgery for a facial tumor and I'm honestly just lost on which surgeon would be the best fit for her... I'd really appreciate any leads or info you guys might have.

If you have any say in the matter, try heading to the Mayo Clinic or Johns Hopkins Hospital instead. To be blunt, I’ve been hearing nothing but bad news lately from people getting treated there. I can't put my finger on exactly what went wrong, but it feels like the Institute itself has really gone downhill. It isn't even just about the surgical side; if things take a turn and she needs oncology, you're in trouble. Once you're locked into their system for treatment, trying to transfer somewhere else is basically an impossible mission because of how these hospitals cut costs.

wanderingcobra76 said:Yes, certain institutions simply won't provide those files on a CD.
They tend to store everything for a specific window of time—and once that period passes, the data is wiped from the archives.

Though... I'm not entirely sure how much sense it makes to make the trip there if their house rule is to refuse CD requests in the first place.🤷
Besides, if you’re heading in for a follow-up with a specialist at the same hospital, they should be able to access those images just fine through the hospital's internal computer system.

They are legally obligated to provide those images. You need to cite patient rights laws regarding access to your own medical records. Without a CD, getting a second opinion from another doctor becomes an impossible task—which is itself a violation of your patient rights. Refusing to release findings carries significant fines, which aren't exactly pennies, especially given how tight hospital budgets are these days.
The fastest way to handle this? Have a lawyer draft a formal cease-and-desist on their official letterhead and send it directly to the clinic director. In my experience, that gets things moving at lightning speed.

John, I am so incredibly sorry you're going through this right now. 😢
At the end of the day, you can find some peace knowing you let your mom make her own choices from the start; you did everything a son could possibly do.

I wish you had reached out sooner, because I really would have steered you toward the Sailboat Association and their head nurse, Sandra, over in that Small town, USA—she’s an absolute saint and runs the whole association. I'm certain she could have offered you some much-needed support.
Your mother's illness was brutal and unpredictable, and honestly, the way those doctors explained things to you—like they were talking to a ten-year-old—is basically the ceiling of medical knowledge when fighting a disease like this. It’s just too overwhelming, and there are no guarantees; sometimes the treatments work, and sometimes they don't.
Hang in there and try to focus on yourself for a change.

Kimberly Wright said:😢

I can't find a single redeeming quality in any of this. 🤷
I've run headfirst into a mountain of contradictions and systemic failures throughout this entire ordeal.

1. You can't just take "caregiver leave" to look after a sick parent.
2. When someone is being driven back from chemotherapy or radiation, they’re expected to sit around waiting at the clinic for at least two hours.
3. Information regarding diagnoses, treatment plans, or patient rights isn't handed to you; you have to scavenge for it from friends, neighbors, or the internet—and even then, you only hear anything from doctors if you already know exactly which technical questions to grill them with.
4. Patient care seems to scale directly with the depth of your pockets or how much you tip the staff with gifts.
5. Despite my mother paying her dues into Medicare and supplemental insurance for decades, she still hasn't received adequate palliative care. She spent ten days in the hospital, and even while she was still on antibiotics, they basically kicked her out the door. Her only other option was a facility in Novi Marof, which I won't even dignify with a comment.
6. As for nursing homes... 🙄 my mom barely lasted a week in one that supposedly boasts "high-quality service." It was so high-quality that they didn't bother giving her water until 2 PM one day—and mind you, she's immobile. They missed doses of her medication, nobody checked if she had even eaten a morsel all day, and they didn't bother to change or wash her once during that entire week.

To address every single one of those points from 1 to 6, I decided to actually do something rather than just watch. I learned how to deal with a whole lot of bullshit, how to swallow my pride for a greater cause, how to slam my fist on the table, and how to show some teeth. I learned how to take the chaos that hit my family and give it purpose by working alongside others. I learned how to take life as it comes, day by day, and then figure out how to tackle it.
Honestly, looking back, without everything I went through with my mother, what I'm facing now with my baby would be so much harder—maybe even impossible for the person I was before Mom got sick.
I realized I refuse to be part of the passive masses anymore, just letting life happen to me—letting the things I can't control pass, while doing absolutely nothing about the things I clearly *can* influence through sheer engagement.

Kimberly Wright said:What a heavy topic...
Honestly, when everything first started going downhill with my mom, I was naive enough to think that getting through chemo would be the hardest part. Man, was I wrong...

The emotional roller coaster Mom is riding—smoothly greased by morphine—is enough to drive anyone straight to the edge. Yesterday, I found myself sobbing like a child.
A friend’s mother actually warned me about a month and a half ago that there would come a stage where Mom starts speaking the "demons" of the disease. It is absolutely terrifying.🙂
My mantra is constantly, "It's just the sickness, it's just the sickness," but when certain words cut so deep that your vision blurs from pure grief, despair, and rage, that mantra fails you.
It is an incredible feat of balancing act, trying to care for a terminally ill family member while simultaneously attempting to keep the rest of life functioning normally.

That isn't "art." It's pure sacrifice fueled by love. I didn't have a life of my own for the entire duration of her illness. My existence was effectively put on hold for three years. My only redirection of focus was spending fifteen minutes a day walking my dog and leaning on my partner, who moved in with me just to keep me upright.
And as for those "demons" of the disease? I could write a whole book on them—covering both her outbursts and my own fits of hysteria and fury. She was sick, sure, but I was right there in the trenches with her, losing it too.
Still, thank God for the silver linings—those moments of clarity and personal growth—because without them, this whole experience would just be a total coma.

Jamie Howard3 said:Is a cerebrospinal fluid transplant even a thing?

😕
No. CSF is the fluid that bathes the brain and spinal cord, circulating from the skull down through the spine.
What's the issue here?

Karen Long said:Well, lucky for you, I didn't see a thread specifically about glaucoma, but I desperately need to hear from someone who’s actually gone through glaucoma surgery (a more severe diagnosis) or anyone with medical expertise in this field.
It's urgent because I just can't wrap my head around the idea of my father going blind!!!

I'm not sure if there's any point in posting his test results if nobody here actually understands this disease or is even following this thread.

Is anyone out there?

My late grandmother sought treatment for her eye at a clinic in Suburban Heights with Dr. Salopek. She lived in ST, and unfortunately, high blood sugar caused major issues with her vision. The doctors in ST had pretty much exhausted all their options and suggested she head over to Suburban Heights to see if they could do anything else, because according to the specialists in ST, the only remaining option was to remove the eye entirely.
I don't know all the specifics anymore, but I do know that Dr. Salopek is one of the top specialists in the country.

Taylor Brown7 said:so I play handball and my knee is a total mess... if I don't wear a magnetic brace I can't even walk straight... it works wonders for me but who knows if it'll work for you... but I'm telling you from my own experience, it really does help 🙂

Oh sure, you just joined the forum specifically to grace us with your glowing testimonial, right?👍

People, please, show some common sense.😳 What kind of nonsense is this—magical magnets fixing motor skills or erasing pain caused by actual physical trauma? If that were actually true, every physical therapist and specialist in the country would be out of a job tomorrow; it’s that simple.
It's scary how easy people are to manipulate. Honestly, it's no wonder the state of our country is what it is when the leadership is composed of people exactly like this.☕

slyangler402 said:My godmother has been battling colon cancer for quite some time now, and her platelet counts have been dangerously low for a while. I’m wondering if anyone knows what might actually help boost them? The doctors just keep sending her home and telling us to wait for the numbers to go up on their own, which makes zero sense to us—how are they supposed to rise without any intervention or advice?

Treating thrombocytopenia really boils down to identifying the underlying cause and how severe the situation is. If the drop is triggered by something else—like sepsis, a vitamin deficiency, or side effects from specific medications—the first priority is knocking out that root cause. For patients facing severe cases, getting a referral to a hematologist specialist is non-negotiable. If there's even a suspicion of TTP, you have to jump on treatment immediately. The standard protocol involves plasmapheresis, which essentially scrubs those antibodies against the ADAMTS13 enzyme out of the bloodstream and replaces them with fresh plasma to restore the enzyme. Most commonly, though, we see ITP, where treatment depends entirely on the severity. If the count dips below 20 x 10^9/L, doctors usually start with corticosteroids; if there's active bleeding, they might bring in intravenous immunoglobulins. The goal is to push that count above the 20 x 10^9/L threshold so the patient can move into regular monitoring. If a patient becomes refractory—meaning the steroids just stop working—they might use immunoglobulins to stabilize things before considering a splenectomy to hopefully induce remission.
Source: Mayo Clinic

From what I understand, unless the levels hit those critical danger zones specifically caused by chemo, they don't usually do much. Once it hits a real crisis level, that's when they step in with a blood transfusion.

To looks way too much like dyshidrosis to me.
There’s already a thread right here discussing it.
The only thing that actually worked for me was DuPont cream.