Support for families dealing with cancer and other serious illnesses (Part II)

Sandra Adams66 said:It’s the third morning without my mom.
I'm under anesthesia, just waiting for the pain to hit. I can feel it coming...

Just seeing this now. 😢 Honey, please accept my deepest condolences. 🙂 😘

Maria Gray45 said:When she was diagnosed back in December 2013, she went through gynecological surgery immediately. They told her if she needed chemo within two years, the nausea would be brutal. Well, here we are five years later and she’s still going strong. After that initial surgery, she underwent radiation treatments, though she actually turned down one round because the pain was just so unbearable she thought she wouldn't make it. Now that they've offered her chemo again, they mentioned they'll provide pain management medication and emphasized that she absolutely has to drink massive amounts of water—that part is critical.
What else should I be looking out for regarding chemo?

Generally speaking, the chemo itself doesn't usually cause direct physical pain. It’s more about how different people tolerate the side effects, which can vary wildly depending on whether you're dealing with intense vomiting or diarrhea. You really have to stay on top of hydration to protect the kidneys; the goal is to flush those toxins out of the system as quickly as possible. Most people struggle to hit those official targets—like 2 to 3 liters a day—but you really need to push it as much as you can. Just remember that everything counts toward that total fluid intake, including fruit, tea, soups, broths, juices, milk, and even watery foods. You also have to be extremely cautious about where you go and who you're around; you really ought to get the best quality face masks available. Chemo essentially wipes out your immune system by attacking all rapidly dividing cells, and that includes your white blood cells.

Raymond Smith53 said:Look, usually the chemo itself doesn't cause massive pain on its own. It’s more about how people handle it—some breeze through while others get absolutely wrecked by the nausea and diarrhea. You gotta chug water to protect your kidneys, too. The goal is basically to flush that stuff out of your system as fast as possible. Most people don't actually hit those target numbers they give you (like 2-3 liters a day), but you really need to push it as much as you can. And remember, that counts everything—fruit, tea, soup, juice, milk, whatever. You also have to be super careful about where you go; grab the best face masks you can find because chemo nukes your immune system. It wipes out anything that divides quickly, and that includes your white blood cells.

I honestly have no clue why she was hurting like that. Her bones were aching so bad it felt like her whole body was just falling apart. And for real, why didn't anyone tell her anything during the last visit?

You might deal with some moderate discomfort from the radiation itself—think things like bladder irritation, gut issues, or that stinging sensation when you're finishing up in the bathroom at the end of treatment. But man, if they have to put in a double J stent to protect your urethra from the radiation, that's a whole different ballgame. That can get pretty intense because those little tubes end up scraping against an already irritated bladder, which is just plain rough.

Maria Gray45 said:I have no idea why she was hurting that badly; it sounded like her bones were literally crumbling, which makes me wonder why nobody gave her any heads-up about what to expect last time.

I’ve dealt with those intense bone aches myself, though it wasn't actually the chemo itself doing the damage—it was the growth factors, those injections they give you to boost your white blood cell count.
To be fair, there are some solid pain pills and even transdermal patches out there that can really take the edge off, provided you have enough patience to cycle through them until you find the right dosage.

As far as survival tips go, just stick to the basics: wear a mask over your nose and mouth, wash your hands constantly, and try your best to steer clear of strangers or anyone who looks like they’re coming down with a cold. Eat as much as you can manage—get your fruits and veggies in, obviously, but honestly, just eat whatever sounds remotely palatable. And stay hydrated; drinking plenty of fluids, especially in the aftermath of a session, is huge.

Thanks for the input, everyone
So, roughly how long does the chemo grind actually last?

Maria Gray45 said:Thanks for the input, everyone.
Roughly how long does chemo actually last?

Well, you can't just lump all cancers together under one umbrella of "chemotherapy," so there isn't a single answer to that...

Raymond Smith53 said:Not all tumors respond to the same kind of "chemo," so...

Yeah, obviously.
Thanks for the input, I guess.
We'll know more once they sit down with the oncologist on the 26th.

Carol Reed19 said:My mom actually dealt with this. If you don't want to talk about it in public, just shoot me a DM and let me know what you need to know.

Thanks. I don't mind keeping it out in the open. We're looking for details on the treatment process, the specific therapy used, where she went for care, and if there was any actual recovery...
It's my mom we're talking about. Symptoms started popping up around month 12, and by middle of month 2, we got the diagnosis: malignant pleural mesothelioma.
It went from "everything looks okay" to a total dead end where none of the doctors have any answers left.
She finished four rounds of chemo and was supposed to go under the knife here in San Francisco, but then a pulmonary embolism hit between round 3 and 4... just made everything way more complicated. The chemo didn't seem to do anything at all, and now they're refusing to operate.
She’s heading to New York City to see the specialists we were already talking to, but they won't touch her with a ten-foot pole right now because she's too weak. She needs to recover first, but time is definitely not on our side...
So yeah, we're basically looking for any shred of hope or anyone who's been through this.
Thanks again for the help.

melloworca6 said:I'm just seeing this now. 😢 Honey, please accept my deepest condolences. 🙂 😘

🙂 🙂
The little beast was gone before I could even catch my breath, let alone blink...
From the first time I heard about the trouble to the final outcome—it's only been 57 days. :neverica:

I think I’m officially ready for some psychoanalysis.
Starting with venting on an internet forum, anyway. Hopefully, that’ll be enough to keep me sane.

Kimberly Taylor92 said:Thanks. I don't mind being public about this. I'm mostly looking for details on how they treated her, what specific type of therapy was used, where she received care, and if she actually recovered?
It’s my mother we’re talking about. The first symptoms cropped up around December, and by mid-February, she had been diagnosed with malignant pleural mesothelioma.
It went from those initial, somewhat optimistic prognoses to a point where today, none of the doctors seem to have any real answers left.
She finished four rounds of chemo and was supposed to undergo surgery here in San Francisco, but between the third and fourth round, she suffered a pulmonary embolism, which just threw everything into total chaos. The chemotherapy hasn't yielded any meaningful results, and now they're refusing to operate.
She travels to New York City to see the specialists we've been in contact with, but they won't perform the surgery right now because she’s simply too weak; they want her to recover first, but time is a luxury we don't really have...
So, naturally, we are grasping at every remaining possibility and looking for anyone's lived experience.
Thanks again for the help.

The situation sounds incredibly grim. It seems they likely opted for chemo in an attempt to shrink the primary tumor enough to make surgery viable, but your mother's body just isn't responding to the treatment at all. Honestly, it’s highly unlikely any surgeon would even consider opening her up if she's this frail; the risk factor is just astronomical. She needs to regain some strength. You didn't mention if she's always been physically delicate or if this is a case of clinical cachexia. It might be worth asking the doctors to prescribe specific nutritional supplements designed specifically for cancer-related cachexia—things like Prosure or Forticare.

Kimberly Taylor92 said:Thanks. I don't mind if this stays public. I'm really looking for info on treatment methods, what kind of therapy was used, where she was treated, and if there's any chance of recovery?
It's about my mom. Symptoms started showing up in December, and by mid-February, she got diagnosed with malignant pleural mesothelioma.
It went from promising initial prognoses to a point where none of the doctors have any solutions left.
She finished four rounds of chemo and was supposed to have surgery here in San Francisco, but a pulmonary embolism hit between the third and fourth round, which just made everything so much worse. The chemo didn't seem to do anything, and now they're refusing to operate.
She’s traveling to New York City to see the specialists we've been in touch with, but they won't operate right now because she's too weak. She needs to recover, but time is definitely not on our side...
So yeah, we're looking for any possible options or anyone who's gone through this.
Thanks again for the help.

She was treated in a Small town, USA, and did chemo (not sure which specific type, sorry). Honestly? I'm scared to say there isn't a cure here. My mom passed away from a random infection that spiraled out of control because she was just too weak to fight it off. It wasn't even a year after her diagnosis (same diagnosis, btw). Surgery just wasn't an option; one doctor mentioned he might consider it, and we waited for her to get stronger, but it never happened. If you ask me, listen to your doctors, stick to the therapy, and try everything to boost her overall strength. I'm terrified because, at the end of the day, there might not be anything else you can do.

Carol Reed19 said:She was getting treated in a Small town, USA, doing chemo (not sure which kind, sorry). Honestly, I’m scared there’s no cure here... my mom passed away from some random infection that just got out of hand because she was too weak to fight it off. It wasn't even a year after the diagnosis (same diagnosis, by the way). Surgery was totally off the table—one doctor mentioned he might operate if things looked better, but we were waiting for her to get stronger and... well, we never got there. If you ask me, listen to the doctors, stick to the therapy, and just try to keep her strength up as much as possible. I’m terrified there isn't anything else you can actually do.

I'm so sorry it ended like that... I think I get the gist of what you guys have been fighting through.
Same thing happened with my mom. They keep waiting for her to get strong enough, but it’s just not happening that easily. We actually just heard about this one doctor in a Small town, USA a few days ago, so we already reached out... hoping maybe he'll agree to do the surgery.

Raymond Smith53 said:The situation doesn't look great. They probably did chemo to try and shrink the primary tumor so they could operate, but your mom just isn't responding to it at all. It's unlikely anyone will want to cut her open if she's that frail. The risk is just way too high. She really needs to gain some strength now. You didn't mention if she's always been weak or if it's "cachexia"... maybe ask the doctors for specific nutritional supplements meant for tumor-related cachexia (like Prosure or Forticare...).

The weakness is just the chemo and the illness itself taking its toll. She was always healthy and tough before this. She’s already on Prosure, taking Beta-glucan C, Pradaxa to prevent clots, homemade juice, iron... and for a little while, we were doing Iscador injections that we order from Germany.
We found out about something new a couple of days ago, Merck immunotherapy, but you need a doctor's okay for that... so we're gonna try to get that approved at the clinic in our Small town, USA.

Kimberly Taylor92 said:I’m so sorry things turned out this way; I can pretty much picture what you guys have been fighting through.
It’s the exact same story with my mom—everyone’s just waiting for her to get strong enough, but it’s definitely not that easy. Just a few days ago, we heard about this specialist in a Small town, USA, and we already reached out. We’re really hoping he might be willing to step in for surgery.

The weakness is just what happens after chemo and dealing with the disease in general. She’s always been super healthy and tough, though. Right now, she’s on probiotics, taking beta-glucan C, Pradaxa to prevent clots, homemade aronia juice, iron, and we’ve even been doing short bursts of Iscador injections that we order from Germany.
We actually found out about something new a couple of days ago—immunotherapy with Merck—but you need a doctor's okay for that, so we’re definitely going to try to get that approved at the clinic in our Small town, USA.

Wishing you the best of luck!
Okay, tiny rant incoming. As someone who has lost way too many close people to cancer, primary care doctors drive me absolutely insane. In my experience, they’re always the last ones to even suspect cancer, brushing off all kinds of symptoms as something else entirely. By the time they finally land on a diagnosis, it’s usually way too late. Look, I get it—you can’t just send everyone for a CT scan, but shouldn't there be some level of awareness? Seriously. It is infuriating to see a non-smoker with lung issues for years being told it’s just lingering effects from some old bout of TB they never even had. And don't even get me started on how the national screening programs are basically nonexistent except for three specific types of cancer. What happened to those announcements about the lung cancer early detection program? People were talking about it! If there isn't a national program, it’s like it doesn't exist. It feels like our primary care docs have become terrible diagnosticians, and by the time you actually see a specialist, it’s often too late. And don't even get me started on the communication between specialists and patients—honestly, most of them seem to have zero social intelligence. Anyone who has ever tried to dig for actual info on a patient's condition knows exactly what I mean. Thank God for Google, otherwise, we wouldn't understand a single thing on these lab reports.
One more thing regarding those routine checkups my late parents used to go to—where everything always came back perfect. Honestly, it feels like just another way to squeeze money out of people. Shoutout to the exceptions who actually do their jobs and examine you properly, though. And what am I supposed to say about the internist who, when I asked if my lungs should be checked given my mom's diagnosis and my own risk, just replied, "Oh, well, you breathed what you breathed, what can you do?"
Rant over.

Terry Ruiz23, I hear your frustration, and while I see where you're coming from, I view things through a slightly different lens. In my experience, if my mother’s primary care physician hadn't been so relentless, she probably would have never received a diagnosis at all. She was bounced from one specialist to another, sent on a wild goose chase through endless clinics, and after several years (!) of running in circles, it was obviously too late to change the outcome. To make matters worse, two doctors at a pulmonary clinic—one of whom actually held a director position!—tried to convince her she had scarring from tuberculosis she never even had, only for it to turn out to be lung cancer. Then, on the other hand, specialists at a rib clinic were insisting those lumps on her neck were just fatty deposits, when they actually turned out to be metastases fused to her nerves. How does a situation spiral so far out of control? My poor mother suffered so much after the diagnosis; she endured three and a half agonizing years before she finally passed. 🕺

The way routine checkups work in this country, they’re basically designed to catch the standard stuff—blood pressure, cholesterol, heart issues—rather than actual tumors. It’s frustrating because just two weeks before my surgery, I had everything come back perfectly clean. My heart, lungs, bloodwork, blood pressure—literally every single thing a standard physical covers was fine. Yet, there I was, already at Stage 3, unknowingly dragging that thing around for years, or so the doctors told me. If they had actually bothered to run specific tumor markers, they probably would have caught it much sooner, but that’s just not what happens during a regular annual exam. What I’ve learned is that you really have to listen to that tiny grain of doubt, that gut instinct that creeps in. We all get it—that subconscious feeling where you realize you just don't feel quite right, maybe your back aches more than usual, or you find yourself catching your breath unexpectedly, or you're just feeling weaker without any obvious reason. If I had just gone out and paid the extra couple hundred bucks to get those specific markers checked at a private clinic... but unfortunately, that’s how we think. We convince ourselves that $67 is too much to spend, when in reality, it could prevent so much devastation.
The real issue here is that our entire healthcare system seems to operate exactly how you described. Instead of catching things early when they're manageable, the focus shifts entirely to damage control once the crisis hits. I suppose I have some luck on my side, as I have one of those rare types of tumors where chemo can actually wipe out the metastases, so there is still hope for me, though even that isn't a guaranteed win.

Maria Allen6, I wish you nothing but strength and courage as you continue this fight. We honestly need more stories like yours on this thread—and frankly, more positive news in general. 🎉

Kimberly Taylor92 said:Thanks. I don't mind if this stays public. I'm looking for info on treatment methods, types of therapy, where she received care, and if there's any hope for recovery.
It's my mother we're talking about. Symptoms first showed up in month 12, and by mid-month 2, she was diagnosed with malignant pleural mesothelioma.
We went from being told the prognosis was positive to a point where none of the doctors have any real solutions left.
She finished four rounds of chemo and was supposed to undergo surgery here in San Francisco, but a pulmonary embolism hit between months 3 and 4, making everything much more complicated. The chemotherapy hasn't yielded any results, and now they're refusing to operate.
She’s traveling to New York City to see the specialists we were previously in contact with, but they won't perform the surgery right now because she's too weak while waiting to recover—and time is definitely not on our side...
Naturally, we're looking into every possible remaining option and seeking out anyone's lived experiences.
Thanks again for the help.

Pleural mesothelioma is a rare and very specific malignancy that typically affects people who've had years of exposure to asbestos dust.
It's an incredibly aggressive disease that tends to be highly resistant to standard oncological treatments.
That's basically the extent of my knowledge.

If she isn't aware of any past asbestos exposure, you really need to scrutinize her living environment and the construction materials used in her home. It's entirely possible she's surrounded by dangerous asbestos-containing tiles that need to be removed immediately to protect everyone else.

Sent from my SM-J510FN using Reddit

Hey there,
it’s been about three years since I last checked in, and yeah, I’m still hanging in there 🙂. Just wanted to wish everyone the best of luck and some serious grit in the fight ahead—and a huge thanks to Angela Wright.

It has been four months since my mother passed, and I am just three weeks away from giving birth. To make matters worse, we found out yesterday that my aunt—my mom's sister—has been diagnosed with lymphoma... 🕺