Posts by Angela Wright

granitefalcon26 said:Get to the nearest hospital emergency room and ask for neurology immediately. You need an urgent brain CT scan. What you're describing could be anything from MS to a brain tumor or even an aneurysm.

I’m with them on this one. These symptoms are incredibly serious!

Linda Morales66 said:Just eight days ago, Mom told Dad she didn't want me coming around because it was too stressful—and since I have a high-risk pregnancy, I have to be careful. But today, Dad tells me she hasn't asked about anyone for three days; she just sits there accusing him of everything under the sun. It’s reached the point where she’s asking which hospital she’s in, searching for a thermometer, and insisting she’s lying on top of it (???) ...it's like she's having hallucinations or something. Now, Dad mentioned the doctor said there's a chance she could slip into a coma and never wake up (??!!!)—is that because she isn't eating? It's like she's already made peace with dying, almost like she's just waiting for it to happen...😢
The other day, she asked him to buy her some Dasani (the one with the three hearts), so Dad spent half the city hunting for it, only for her to tell him she doesn't want it and never even asked for it. He's being treated like a total fool, God help him... he's taking all of this incredibly hard, especially since he struggles with high blood pressure and heart issues himself..
To make matters worse, they live alone in their apartment (I'm in a different city), and he's forced to look for a facility for her because he can't handle this on his own—especially since she still can't move! Plus, he doesn't know how to cook...
I honestly can't believe any of this is happening... looking back now, I'm starting to recognize those "symptoms," but still... how can it happen so fast? Cancer really is that silent killer!!!
And thanks for the reply... it means a lot...

Linda Morales66 said:What's even worse is this feeling that we're abandoning her... part of us just wants to bang our heads against a wall, yet Mom is all we can think about. We're constantly searching for a solution, wondering what to do next, how to help her?? But when we see she has no desire to fight, we just sink even deeper... it's like she's surrendered and is just waiting...
I don't even know who I should be crying for more right now......

She rejects us all, won't ask about anyone... she just brushes Dad off...

I am so incredibly sorry things are this bad... I fear Mom might have entered the terminal phase where everything starts to fade out. It hurts to tell you this, but it seems to be the reality. I know the diagnosis itself is enough of a shock, let alone finding out she's in the final stages. Please, make sure Dad tries to get her into a decent facility where she can receive proper palliative care. He definitely isn't equipped to handle this alone, and even if you were in the same city, you couldn't be nursing a patient like this given your pregnancy. Just try to spend time with her as much as your health allows. I know how devastating this is; I went through the exact same thing with my mother while dealing with a complicated pregnancy and a premature birth.
For Dad, you might be able to arrange for a meal delivery service to drop food off at the house every day for a small fee. It’s pretty practical and lets him eat a decent meal at home without the stress.
Honey, goodbyes are heartbreaking, especially with parents and especially when it happens so suddenly, but as hard as it is, it's a natural part of life, just like the anticipation of your little one arriving. I hope you can face all of this with peace in your heart. I truly hope your mother lives to see her grandchild born. My mother, unfortunately, didn't get to see that, even though she wanted nothing more in the world.
Be brave and trust that inner strength you carry. You have more power within you than you could ever possibly imagine.

My dear Linda Morales66, I am so incredibly sorry 😢
This didn't just pop up two weeks ago for Mom. The tumor had been there for a while, slowly progressing and spreading, and it wasn't until the metastases started causing real trouble that everything finally got a name. Sadly, I suspect we're looking at aggressive small cell lung cancer. When the disease has spread this far, the statistics are brutal, but statistics are just curves with two ends and a middle—nobody can pinpoint exactly where Mom sits on that line right now. She’s going to start treatment, take whatever odds she's given, and fight. There isn't any other option; you can't just crawl out of your own skin and escape reality. You need to be her rock. If she lashes out in anger or starts acting completely unlike herself, try to remember that it’s the illness talking, not her. You should go see her if that’s what your heart is telling you to do, talk things through, and get on the same page, but you have to pace yourself. As much as she is your mother—and I know she's the most important person in your world—right now, your child is the priority, and you have to think about that first. I'm certain that as your mother, she wants exactly that for you, so please don't make things harder on yourself by resisting it. Just try to carry this pregnancy through to the end in peace, and see if you can coordinate things so you can help Dad without being totally overwhelmed yourself.
Stay strong and hang in there.

rowdyfox12, check this out: http://cancerhelp.cancerresearchuk.org/
It’s a solid resource that breaks everything down by tumor type and even dives into specific dietary approaches for each one.
Beta-glucan is a heavy hitter. As for all these supplements you see floating around, there isn't much oversight in the US; most just have to pass basic toxicity tests to hit the shelves. You absolutely need to run any supplement by an oncologist first to make sure you aren't triggering a contraindication. Don't go overboard—pick maybe three things and stick to them religiously.

swiftgardener said:She’s been on Fursemid for about 10 days now and her mouth is getting pretty dry from it, though she isn't bleeding much. Thanks for the tip regarding the physiological...

The main thing is ensuring she takes Kalinorm alongside it to prevent her electrolytes from crashing; otherwise, she could turn a nasty shade of yellow. As for the puncture, that’s really not the best move. Once you pierce the pleura, you're basically just creating a new pocket for more fluid to accumulate. It's better to delay that procedure as long as possible, and eventually, you just go with a permanent drain once the buildup becomes too heavy to manage.

vividsailor7 said:A secure diagnosis for TBC is established by isolating Kochov bacteria from a sputum sample.

Oh, really?😲 Then how do you explain finding traces in the bloodstream? How is it even possible to detect it there?

swiftgardener said:Last fall, my mom’s PET/CT scans showed multiple spots on her lungs along with some in the mediastinum. They put her on chemo, but it hasn't done a thing. Now she's relying on an oxygen concentrator and struggling to breathe; she can't even lie down flat, and honestly, we haven't seen much improvement since the oxygen started a few days ago. Her most recent lung CT confirmed that the disease is progressing.
The doctors at the lung clinic told us she doesn't need hospitalization because there isn't much fluid buildup, so I was wondering if Linda Baker51 could maybe give me a heads-up—even just through a private message—on how they managed to stabilize her mother's condition to make things easier. All we're getting from our team is that this is just how the disease moves and there's nothing left to do.

Lisa Ross81, I assume the oncologist doesn't want to start any more chemo without concrete confirmation, especially since her markers were sitting around 90 at the last check-up here in the States.

You really need to have that oxygen dosage titrated properly; get in touch with her pulmonologist immediately! Whatever you do, do not try to crank up the oxygen levels on your own. Make sure she uses a saline spray (like Ocean or a similar nasal mist) because the oxygen can actually burn her nasal passages. Is she taking Fursemid?

Lisa Ross81, when it comes to TB, I don't care if there were no traces in the sputum; if it shows up in the bloodwork, there’s no debating it.

Regarding the precision of tools like a PET-CT, a huge part of that depends on who is actually reading the results. It’s happened more than once where our radiologists misread a PET-CT, to the point where scans had to be sent over to Denver just to get an accurate reading. You need actual experience here, because a PET scan will light up anywhere there was once significant inflammation or trauma. You have to know how to tell the difference between old scar tissue and something actually malignant.
I’d suggest getting an ultrasound. It’s well known that sometimes an ultrasound can pick up things that even these "high-precision" scans somehow miss.
I have no idea why my mom hasn't had an MRI with contrast yet. Honestly, I think that would clear up a lot of these questions.

Quite simply, just like the doctor said, you can't start any kind of treatment without clear indications that something is actually there. They cling to these markers that are notoriously unreliable, but the second there's any hint that something isn't right—regardless of what the markers say—they push for more testing, which is exactly what they did here. It’s honestly a miracle they’re even willing to send her for another PET scan; you can tell the doctor truly cares about this patient.
Look into that TB situation—consult with an infectious disease specialist or an ID doctor immediately. If there's an infection present, there's no time to waste; you have to start treatment right away, because starting oncology treatments while fighting an active infection can be fatal.

To feels like some kind of phantom virus to me

Linda Baker51 said:My heart goes out to everyone grieving right now. It’s devastating to lose such a fight. My mom is still hanging in there, though. Her oncologist isn't prescribing chemo because her heart just isn't strong enough to handle it. There's a silver lining somewhere... but honestly, we've been stuck dealing with a complication from her mastectomy and lymph node removal for a while now. Her arm keeps swelling up; I know that's common after surgery, but the issue is that none of her doctors are actually doing anything about it. I'm looking for advice—what should we do? Mom is taking John Smith (among other things) to help flush out fluid since she was hospitalized for pulmonary edema. Her arm went down then, but now it's swelling and turning red again. Her GP won't listen, so we're left to figure it out ourselves. She hates taking the John Smith because it drops her blood pressure, but she has to take heart meds that raise it, so she's constantly feeling off. Last year, they prescribed some therapies back in Small Town, USA, including arm massages, but it didn't really make much of a difference. Any advice?

Find a massage therapist who specializes in lymphatic drainage and have them come by for a few days to get that fluid moving properly.
And you need to stay on top of the doctor—insist they take action, because they absolutely can.

wiredcanyon39 said:My son has stage 2A Burkitt lymphoma. He's 16, and the disease is localized in his abdomen, so it hasn't hit the lymph nodes yet. Aside from some diarrhea, he handled the first round of therapy incredibly well; two weeks after chemo, his levels bounced back to normal, though they had to use injections to boost his white blood cell count, which are great now. He’s being treated under the BFN 86 protocol, specifically BLOCK A. Can anyone give me more insight into this? If everything proceeds according to plan, is he expected to be cured after 4 to 6 rounds of chemo? Also, a side question: what determines whether someone receives chemo in an outpatient clinic for a few hours and then goes home versus staying in the hospital full-time? I know some people do the short sessions while others stay put.

No one can predict exactly how things will unfold, but given the stage and the fact that he showed such a strong initial response, you absolutely have every right to feel optimistic. Unfortunately, just like with any malignancy, there's never a 100% guarantee against recurrence, but people learn to carry that weight, and for many, it never comes back.
Regarding the outpatient vs. inpatient thing, it really boils down to the specific type of chemo being used, the patient's overall stability, and several other clinical factors. With certain treatments, the reactions can be pretty volatile, so doctors prefer having the patient in a hospital ward where they can jump in immediately if things go sideways. Even though staying in the hospital feels awkward and inconvenient, it’s safer to be under a doctor's direct supervision. Outpatient clinics can get slammed, and you might spend hours just waiting for your turn to get hooked up—by the time you're finally done and heading home, the nausea might already be hitting you. It’s often better to just settle into a hospital bed and have some peace of mind.

Bradley Alvarez2 said:..hm
I honestly don't even know how to respond to all of this.
I'm dealing with some similar issues myself.
My back has been absolutely killing me for the last six months, and I just feel drained all the time.
My blood pressure hit 140/110 with a resting heart rate of 100.
I've gone through the ringer—EKGs, Holter monitors, echocardiograms, stress tests... the whole nine yards.
Got my spine checked out too; nothing major, just the classic L5 and S1 issue.
Blood work came back fine.
Thyroid levels are normal.
And yet, everyone thinks I'm just being weird!

That kind of blood pressure and tachycardia isn't "normal" or "okay" by any stretch of the imagination.
You need a solid internist. Make sure you get your kidneys checked out, too.

Grace Kern35 said:Hi everyone.
I honestly don't even know where to start or what to ask... My dad is 53 and dealing with chronic myeloid leukemia. He had a stem cell transplant back on July 2nd, 2012. The donor was his brother, and everything actually looked great for the first two days. But then, the complications hit like a freight train: pneumonia, fever, vomiting, diarrhea, rashes, you name it. The pneumonia cleared up fast, the rash vanished, and the fever broke, but now he’s battling colitis. The constant diarrhea is absolutely draining him—last night he went 36 times. His stem cells have started to take hold and his white blood cell count is finally climbing, but this diarrhea just won't quit. We finally got approval for a new medication from the United States, and he started it yesterday. The doctors are being incredibly blunt; they say it's dangerous because he's so weak. He lost 5 kg in just two days, which is devastating because he's usually a rock—mentally tough and physically in peak condition. Now, he doesn't even have the strength to speak. They say the drug should show results in two to three weeks, but how am I supposed to hold onto hope like that? I don't know if I can handle this. There are seven of us siblings, and I just can't wrap my head around the grief or any kind of negative outcome. I'm seriously considering seeing a psychiatrist or a psychologist just to process this reality.
🙂

Look, there is no way to predict the future. Your dad is critically ill and in a very rough spot, and you've known that for a while now. You have to find a way to pull yourself together and focus strictly on the here and now. Everything happening right now is brutal, but honestly, this level of volatility is common with this type of treatment. When doctors talk about risks, they are laying out possibilities, not issuing a prophecy of doom. The fact that the stem cells are working is a massive win! He's fought this far, and he'll have to fight through this next phase too. You have every right to hold onto hope. If there wasn't hope, they wouldn't be putting him through all of this in the first place; they would have given up on him already.
If you feel like you need help, go get it. It feels like finding a decent psychologist who actually knows how to handle these specific crises is like finding a needle in a haystack around here, but in my experience, what people really need is one solid, professional conversation to help straighten out the chaos in their heads and find a way to focus again.

Sandra Bennett22, you absolutely have to insist that an anesthesiologist reviews his case. You need someone to fine-tune those medication dosages and walk you through how to adjust the patch dosage once you're back home. Honestly, when you're using a patch, you can combine it with things like Voltaren or Tylenol. Sometimes Tylenol works wonders because it covers a massive spectrum of the pain a person is enduring. You really need an expert here. I highly recommend seeking out Jane Doe over at Draskovic Memorial Hospital. She runs a specialized pain management clinic there and could be a lifesaver for you. Just Google her name along with the hospital, and you should be able to find a direct phone number. Sorry for any typos, typing this on my phone quickly.

shadowhound82 said:So... I ended up at the neuro ER today. Long story short, the left side of my body just isn't responding as well as the right.
I have to get an MRI of my spine and my arms and legs too.
A lot of this medical jargon in the report is flying over my head, so if anyone could break it down, I'd appreciate it.

-isocoric pupils
-patellar reflexes weakened
-positive Lasègue sign at 45 degrees
-slight ataxia during Romberg

I understood some of it, but not all of this... :/

Look, I’m not exactly a medical expert here, so I’m banking on one of the doctors in this thread stepping up to explain things. From what I gather, the Romberg test checks your balance, and "ataxia" refers to those unsteady movements or tremors. As for your pupils being isocoric, that actually means they're the same size, which is a good thing.
Did you get an EEG done yet?

From what I’ve seen:
When my mom was diagnosed with cancer, it acted like a massive filter for everyone in my life. It stripped away the masks. People I actually expected to show some empathy offered nothing but empty pats on the back, while folks I barely even considered part of my inner circle turned out to be incredible pillars of support.
In America, a cancer diagnosis is treated like this huge, terrifying taboo—it’s as if you or someone close to you suddenly became an alien. Most people just don't want to, can't handle, or simply don't know how to deal with it, so they end up spouting total nonsense, even when they think they're being helpful.

Jesse Ward45 said:My father passed away this past Thursday. Thanks for the advice everyone. Wishing you all strength in your own fights.

😢 Please accept my deepest condolences. Hang in there.

Angela Nelson51 said:My dear friends, it breaks my heart to tell you all that my dearest friend passed away yesterday on Friday the 13th after an incredibly brutal battle with cancer... she went through so much pain and suffering. I honestly can't put into words the massive void left in my heart and soul. I saw her just days ago, and she was so swollen from the fluid—it had literally reached her head... my angel is gone now, and I have no idea how I'm going to move forward without her. But thank you all for the support; it truly meant the world to me... heaven gained a beautiful angel today, while I'm left here behind... it’s going to take me a lifetime to wrap my head around this... but I live for the hope that we'll meet again... at least her struggle and agony are over... even if mine is only just beginning.

I am so sorry. Please accept my deepest condolences, dear. 😢

Gregory Lopez7 said:Thanks. I checked the local pharmacies, but they don't stock it and couldn't even order it. I saw some at Miller, but buying it in small packets is pretty inefficient if you need a decent amount. Currently, I'm doing one triathlon a week, plus track and field throughout the year and some boxing on the side. There's endless science out there regarding all these supplements, but I personally lean toward a more natural approach—fruits, veggies, and so on. I was thinking about using dextrose powder in my water for hydration while cycling. Would an Isostar drink be a better bet? Or maybe just replacing the dextrose with dried raisins would be enough? Anyway, thanks for the practical advice and tips.

Usually, you can grab those kinds of supplements much cheaper and easier through the sports clubs you train with. At least, that’s how it’s always worked for me.

shadowhound82 said:And now my temperature is at 98.6...

That’s not exactly a fever. But if it starts spiking significantly, you need to get to a doctor immediately.