Support resources for families dealing with cancer and other serious illnesses

Melissa Castillo said:It started out looking like breast cancer with metastatic axillary lymph nodes, but yesterday they confirmed liver metastases too. The main question I'm wrestling with is why surgery is being bypassed—does that mean it’s progressed too far to be operable? I'm assuming chemo is the move now. It's a heavy blow.

Look, you can only get a straight answer to that from a doctor. Ask them directly! And for heaven's sake, get a second opinion.
Where is the treatment happening, and what is the exact tumor type? We need specifics—is it HER2+, how invasive is it, etc.? Also, how big was the primary tumor originally?

Of course, all the official information will come directly from my doctors—various tests and consultations are currently underway. But honestly, I’m too far along to be left completely in the dark, just getting random bits of info over the phone that trigger nothing but anxiety. We should be meeting in person within the next few days, and frankly, I can't wait to have some real answers.

The procedures are being handled at the local hospital and sent to specialists in Boston if necessary. It’s hormonal, and it's invasive; I don't know the exact dimensions yet, but it has already necessitated a full mastectomy and the removal of a third of my lymph nodes.

Thanks, Angela Wright and brisksurfer, for the kind words... 🙂
I know the theory behind how I should be handling all this, really I do, but putting it into practice is a whole different story... I know I need to stop spiraling into these self-pitying moods, but somehow it feels like I’m just watching everything unfold from the sidelines, almost like a spectator in my own life instead of actually living through it...
The hardest part is that my husband just won't communicate with our daughter at all, and when it comes to me, he only talks if I practically force him to... It honestly feels like he’s just ignoring us, as if he views us as the enemy or maybe even thinks we’re the ones to blame for his condition, yet the moment someone drops by—especially his sister—he completely transforms, becomes chatty, even laughs.... man, I have no idea what she must think of it all, and whenever I try to ask him why he acts this way, he just hits me with some ironic remark.... 😢
A friend told me it's because he feels guilty toward us and that he loves us... honestly, he was never the type to wear his heart on his sleeve; he’s always kept everything bottled up inside, and now it’s just become so much more intense.... it feels like there's a literal stone sitting in the middle of our house...

Heh, I don't want to be overly dramatic about it, because I know people have their own struggles to deal with, but it helps just to vent a little bit like this, because I feel so abandoned and lonely, and I don't really have anyone else to talk to... people tend to steer clear of getting involved in situations like this... and I can't even blame them...

Melissa Castillo said:Of course all the official details will come from the doctors—they’re running a whole battery of tests and consultations right now. But I’m too far removed from the situation to be able to stick my nose fully into the middle of it. Right now, I’m just getting bits and pieces over the phone, which honestly just feeds the anxiety. We’re supposed to meet up in a few days, and I’m anxious to see her, obviously.

The work is being done at the local hospital, and if necessary, she’ll be transferred to a major medical center in a big city like Chicago or New York. It’s hormonal and invasive; I don't know the exact dimensions, but it required a full mastectomy and the removal of a third of the lymph nodes.

It surprises me that they didn't jump straight into chemo immediately following surgery for an invasive type... but then again, I'm just a layman.
In any case, if it were me, I would absolutely insist on getting a second opinion from an independent facility.

rustymaker5 said:Thanks to Angela Wright and brisksurfer for the support. 🙂
I know the theory behind how I should be handling this, but the execution is failing me... I need to stop spiraling into self-pity, but honestly, it feels like I’m just watching this play out from the sidelines, like it’s some movie happening to someone else rather than my actual life...
The hardest part is that my husband won't communicate with our daughter at all, and with me, it's only when I practically force him to speak... It feels like he’s just ignoring us, acting as if we’re the enemy or somehow responsible for why he's in this state. But then, the second someone drops by—especially his sister—he completely transforms. He's chatty, he's engaged, he's even laughing... man, I have no idea what's going through his head, and when I try to ask him why he acts this way, he just hits me with some sarcastic remark....😢
A friend told me it's because he feels guilty toward us and that he loves us.... please, he was never the type to wear his heart on his sleeve; he's always kept everything bottled up, and now it's just been amplified... it's like living with a stone in the house...

Look, I don't want to be overly dramatic—everyone has their own battles to fight—but it helps to vent like this. Otherwise, I just feel abandoned and isolated, and there isn't really anyone else I can talk to... people tend to steer clear of getting involved in situations like this... and I don't blame them.

Try to psych yourself up to sit down with him for a real, raw conversation. Make it clear that you are ready to turn a new leaf and leave the circumstances that led to this mess in the past. Tell him straight up that whether he likes it or not, he can't get through this without your support. Remind him that you are his wife and that these trials are the ultimate test of a marriage's strength. Let him know you are willing to fight for him, but he has to start fighting for himself. Shutting down and pushing the family away isn't a solution; it just makes life harder for everyone—him, you, and the kid—and there's no reason to make things more difficult than they already are.
Lay all your cards on the table and let him decide how he wants to move forward.
He needs to make a choice for himself.
Good luck.

Angela Wright said:I find it baffling that they didn't jump straight to chemo immediately following the surgery for an invasive type... but then again, I'm just a layman.
In any case, if I were the patient, I would absolutely insist on getting a second opinion from an independent specialist.

I went through surgery, then chemo, and finally radiation. I think I phrased things poorly in my previous posts—when I mentioned the start and end of my treatment, I was implying that chemo happened right in the middle of those two stages.

Honestly, she handled everything like a total pro. We all did our absolute best to step up and provide as much support as possible to make things easier for her. She followed the protocol to the letter: just one week after that grim mammogram, she was already in surgery. Since then, she’s been sticking to her exercise routine, eating right, and powering through her chemo sessions without a single break—she didn't even get sick once. After spending two weeks in the oncology ward, everything went exactly according to the doctors' expectations. But just when things finally seemed to stabilize—which clearly was just an illusion—it’s all starting over from square one. She told me she had hoped that staying consistent with her medication would buy her at least four or five years of peace, not that everything would come crashing back this quickly.
The mere thought of the fear consuming her—and the way she tries so desperately to mask it—is driving me insane. It is far too early for me to be without her.

rustymaker5, I am sorry you’re dealing with this mess. Hitting a brick wall like this is the absolute worst, and his behavior is nothing short of reckless and irresponsible—especially when a child is involved. Ideally, you should confront him directly and demand some cooperation, but only you know if he’s actually capable of that or if it’s even worth your breath. Honestly, you have very little to lose here. Give it a shot.

Melissa Castillo said:She went through surgery, then chemo, then radiation. I think I phrased it poorly in a few posts above; I mentioned the start and end of treatment, implying chemo was happening in between.

Overall, she handled everything like a total champ, and we all did our absolute best to make things easier for her and provide maximum support. She followed the playbook to a T—she was in surgery just a week after that grim mammogram, stays active with regular exercise, eats right, went straight through her chemo sessions without any breaks, and didn't vomit once. She spent two weeks at the Mayo Clinic oncology ward, and everything went exactly according to the doctors' expectations... Right when things finally seemed to stabilize (clearly just an illusion), it’s all starting over again. She told me she was hoping for at least 4 or 5 years of peace—assuming she stayed consistent with her meds—rather than having everything come crashing back this fast.
Just the thought of the fear haunting her, even though she tries so hard to mask it, is driving me insane. It's far too early for me to lose her.

Are we talking chemotherapy or hormone therapy? People usually mix those two up.
What specifically was she taking? Can you double-check?
In our support group, we've seen cases where women with invasive tumors that were hormone-dependent—sometimes in both breasts—were treated with surgery alone, followed by hormone therapy and radiation, which, from what we know, isn't the standard protocol.
That's why I asked which hospital she's at, just in case they're at the same clinic.

Let's move this to a PM🙂

I would like to join this group. Reading through the posts, I felt heavyhearted seeing the loved ones you all have lost, yet I also found small glimmers of hope, though I must admit my own hope for my mother's recovery feels increasingly fragile...

My mother is 62 years old. Fifteen years ago, she was diagnosed with uterine fibroids, which led to a hysterectomy and removal of her ovaries. She was hospitalized at the time due to severe bleeding, where doctors discovered she was extremely anemic and found an enlarged left atrium caused by previously untreated high blood pressure.

As you might guess, she is one of those people who refuses to listen to the doctor until everything falls apart.

In 2004, she was diagnosed with left breast cancer (it started as a persistent skin ulcer on the breast that wouldn't heal). She underwent a mastectomy, chemotherapy, and radiation. Her follow-up treatment involved Nolvadex, which was recently switched to Aromasina tablets. She has maintained regular checkups, and everything seemed fine; her markers were always hovering around 7.

A few years back, she suffered heart failure and was admitted to the ER; after a couple of weeks in the hospital, she was discharged and recovered. However, she was also diagnosed with Type II diabetes at that time, for which she now takes Glucophage.

About nine months ago, she had a gallbladder attack that resolved relatively well through diet and antibiotics. The doctors decided not to surgically remove the stones.

Roughly three months ago, while preparing for a routine oncology appointment, she had standard tests done. Suddenly, her markers spiked to 538. We were so naive that we briefly wondered if the lab technicians had mixed up the samples... An ultrasound revealed a suspicious lesion on her liver.
When we met with the oncologist, she stated it was a recurrence, noting in the report that the abscess did not require evacuation. The medical board decided to put her on Taxol, consisting of 12 weekly chemotherapy sessions. She has tolerated the treatments well so far without excessive nausea; her hair fell out, and she dealt with uncontrolled nasal congestion for a few weeks, but that was it.
The oncologist noted in her charts that both subjectively and objectively she is improving and tolerating the therapy well, so she decided to proceed. She is currently on her 14th cycle.
During those twelve weeks, her markers were tested again at week six and had risen to 575, but they dropped to 350 just a couple of weeks ago.
Throughout the treatment, the doctor initially noted an abscess, then mentioned ascites, which is now receding. Her immune system is okay, though she is slightly anemic. Physically, she is visibly and gradually weakening, though she regains her strength quite well a few days after each chemo session.

Last week, her sedimentation rate spiked, so the doctor decided to skip a weekly dose of Taxol. This week, her blood work looks better and it was time for the next round, but she wasn't even able to make it to the hospital due to pain in the liver/gallbladder area, similar to what she felt during her previous gallbladder attack. The doctor told us to give her pain relief and bring her in on Monday once she recovers. He also mentioned it might be shingles(?).

I heard from other women at the oncology clinic that they also experienced intermittent gallbladder or liver pain and found that drinking black tea helped.

Has anyone had similar experiences or seen a similar progression of illness?
What should I do?

Nathan Wilson86 said:I’m jumping in here to join this group. Reading through these posts, my heart goes out to everyone who has lost loved ones—it’s heavy stuff. At the same time, I’ve found little glimmers of hope in some of your stories, though I have to be honest: I’m holding onto hope for my mother, but that hope feels like it’s starting to flicker.

My mom is 62. About 15 years ago, she was diagnosed with uterine fibroids, which led to a hysterectomy and removal of her ovaries. She was hospitalized back then due to massive hemorrhaging, and that’s when they discovered she was severely anemic and had an enlarged heart caused by untreated high blood pressure.

If you know anyone who refuses to listen to a doctor until everything falls apart, she’s exactly that type.

Back in 2004, she was diagnosed with left breast cancer—it actually started as a persistent skin ulcer on the breast that just wouldn't heal. They performed a mastectomy, and she went through chemo and radiation. Since then, she’s been on Tamoxifen, though they recently switched her to Aromasin tablets. For the longest time, her checkups were routine and everything looked fine; her markers always hovered around 7.

A few years back, she suffered heart failure. She was rushed to the ER and spent a couple of weeks in the hospital before being cleared to go home. Around that same time, she was diagnosed with Type II diabetes, so she’s been taking Glucophage ever since.

About nine months ago, she had a gallbladder attack. It wasn't too bad, managed with diet and antibiotics, and the doctors decided against surgery to remove the stones.

Then, about three months ago, while prepping for a routine oncology appointment, we did the standard labs. Out of nowhere, her markers spiked to 538. We were so naive we actually thought there might have been a mix-up at the lab. Then an ultrasound picked up a "spot" on her liver.
When we saw the oncologist, she told us it was a recurrence. The report mentioned an abscess that didn't need evacuation. The medical board decided to put her on Taxol—twelve weekly sessions. So far, she’s handling the treatment reasonably well without massive nausea, though she lost her hair and dealt with some uncontrollable nasal drainage for a couple of weeks.
The oncologist noted that both subjectively and objectively she’s doing better and tolerating the drugs well, so they decided to push forward. She’s currently on her 14th cycle.
During those twelve weeks, we checked her markers again at week six, and they had climbed to 575. However, just a couple of weeks ago, they dropped down to 350.
Throughout the treatment, the doctor initially noted an abscess, then shifted to mentioning ascites, which seems to be receding. Her immune system is okay, though she’s slightly anemic. Physically, she is visibly and steadily weakening. After chemo, she hits a wall, but she usually bounces back after a few days.

Last week, her sedimentation rate shot up, so the doctor decided to skip a week of Taxol. This week, her blood work looks better and it was time for the next round, but she couldn't even make it to the hospital. She’s in significant pain in the liver/gallbladder area, similar to what she felt during her gallbladder attack. The doctor told us to give her pain management and bring her in on Monday once she’s stabilized. He also mentioned it might be shingles(?).

I heard from some other women at the oncology clinic that they’ve dealt with similar intermittent gallbladder/liver pain and that they drank black tea.

Has anyone gone through anything similar or seen a disease progression like this?
What should I do?

Dear Alice,
just speaking from a layperson's perspective based on what I know, I think they made a huge mistake by not removing those stones, especially after she already had an attack.
She was diagnosed with breast cancer, and from what I’ve personally heard from oncologists, those gallstones you’ve been dealing with for years—the ones causing constant, simmering inflammation—can absolutely spiral into something much more sinister, like cancer.
I’m dropping this link to an association forum where they are discussing this exact issue. Just scroll down to the last four posts on the page. You'll find people talking about it, including an oncologist's take (Dr. Jasna Radić at Washington, D.C. General Hospital).
And as for that bit about shingles from one doctor? Honestly, all I can say is that it’s incredibly moronic, especially since it’s common knowledge she has breast cancer (though it's still unclear if we're talking about carcinoma, melanoma, or what specifically?) and those long-standing gallstones.
Sometimes I truly feel like I picked the wrong profession, considering the sheer number of incompetent doctors I've encountered over the last five years.☕

I'll start by introducing myself as Alice, and hello everyone!!

I'm new to this forum in general, and specifically to this thread. My time is limited—I’m actually typing this while at work—but I’ve scrolled through some posts and I have to say, I'm impressed by what I've read. At the same time, I want to offer my sincere empathy and support to all the members here and their families.

I stumbled upon this forum by accident while searching for information about cancer, hoping to find some way to help my loved ones.
To be blunt, about six months ago, I found out my cousin, Brady, has cancer. Using that word feels heavy, and honestly, the disease itself is even heavier. I don't have a medical background and I'm still trying to wrap my head around the differences between various tumors and melanomas, so please forgive me if I get the terminology wrong. He’s 29, the same age as me; we've been close since we were kids. Now that he needs help more than ever, I'm trying to provide it in any way I can, which is why I'm posting this.

I don't have a full picture of his illness yet, but I know this: he had a mole on his leg that accidentally got scraped off during a soccer game. Even though it bled periodically, he didn't see a doctor, thinking it was pointless—a hellish mistake that turned out to be the root of everything. Eventually, things took a turn for the worse. After his immune system crashed and his blood work showed something was seriously wrong, he was rushed from the hospital in Indianapolis to Washington, D.C., to the MD Anderson Cancer Center, where they diagnosed him with a malignant tumor that has spread to his stomach and lungs. After his first round of chemo (I don't know the specifics, just that it was five infusions over five days), it reportedly receded from his lungs, but stayed in his stomach and spread to his head. To make matters worse, he contracted hepatitis while at the hospital in Indianapolis, and he suffered paralysis on the right side of his body because he was given an IV in a hallway due to massive negligence, which only devastated him further.

I didn't think I needed to go through his entire medical history, but I'll find out more and update you. Mostly, I wanted to ask about anyone's experience with that hospital or the institute, since I haven't seen much mention of them here. Also, are there any specific supplements he should be taking to boost his immune system? He lost 20 pounds in three months, and the oncologists haven't prescribed anything for weight or immunity. On his own, he's been taking pills to try and stimulate his appetite.

One more thing I haven't seen discussed: he has swollen lymph nodes all over his body, some as large as a fist, and nobody seems to be doing anything about it. Shouldn't they be surgically removed if they can't be managed otherwise?

I don't know how clear this description makes his situation, but I'm looking for some guidance on what the best next steps might be.
Thanks in advance for any help!!

Gary King2 said:I’ll start by introducing myself as Alice, so first off, hey everyone!!

I’m new here, both to this forum in general and specifically to this thread. I don't have much free time—honestly, I'm typing this while at work—but I've scrolled through some posts and I have to say, I'm impressed by what I've read. At the same time, I want to offer my sincere sympathy and support to all the members and their families.

I stumbled upon this forum by accident while searching for information about cancer, hoping to find some way to help my loved ones.
Basically, out of nowhere about six months ago, I found out my cousin has cancer. Even though saying "cancer" sounds incredibly heavy, along with the disease itself, I'm not an expert and I'm still learning the differences between various tumors and melanoma, so please forgive me if I miss the mark on any terminology. He's 29, the same age as me; we've been close since we were kids, and now that he needs help more than ever, I'm trying to provide it in the best way possible, which is why I decided to post this inquiry.

I have limited information on his illness right now. All I know is that he had a mole on his leg that accidentally got ripped off during a soccer game. Even though it kept bleeding slightly, he didn't bother seeing a doctor, thinking it was pointless—a hellish mistake that turned out to be the root of everything. After some time, things took a turn for the worse; once his immune system dropped and his bloodwork showed something was wrong, he was rushed from the hospital in Indianapolis to Washington, D.C., to the MD Anderson Cancer Center, where they diagnosed him with a malignant tumor that has spread to his stomach and lungs. After finishing his first round of chemo (I don't know which kind, just that it was five IV bags over five days), it supposedly receded from his lungs, but stayed in his stomach and spread to his head. In the meantime, he contracted hepatitis at the hospital in Indianapolis, and he suffered paralysis on the right side of his body because he was given an IV in the hallway due to massive negligence, which only made his condition worse.

I didn't think it was necessary to go into his entire medical history, but I'll find out more and report back. Primarily, I wanted to ask about people's experiences with that specific hospital or institute, as I haven't noticed anyone mentioning them here. Also, what kind of supplements should he be taking to boost his immune system? He lost 20 pounds in three months, and the oncologists haven't prescribed anything for it. On his own initiative, he's taking pills to try and stimulate his appetite.

And one more thing I haven't seen mentioned anywhere: he has swollen lymph nodes all over his body, some as large as a fist, and nobody is doing anything about it. Shouldn't they be surgically removed if they can't be managed otherwise?

I don't know how clear this description makes his situation, but I'm just looking for a general idea of the best next steps.
Thanks in advance for the help!!

Personally, I haven't heard great things about the cancer institute except when dealing with these kinds of recurring tumors.
It sounds like your cousin has malignant melanoma that has metastasized throughout his body and into his lymph nodes. Unfortunately, it doesn't look good. 😢
Based on my experience dealing with my mother's illness, and the experiences of members in my advocacy group, you really have to know your own disease inside and out and stay on top of every detail. Our healthcare system functions catastrophically; instead of cases being handled by interdisciplinary teams, everything falls onto the shoulders of a single oncologist. Because of the sheer pressure and volume of patients, they don't have the time to deeply investigate every individual case. They just stick to protocols blindly, and if those don't work, they usually won't bother looking for alternative protocols that have shown success in studies or searching for clinical trials he could join.
That’s why it is absolutely vital for the patient—provided they have the strength—to start digging into this research themselves. Ideally, they should have a close friend or a family member stepping up to do the heavy lifting for them. You need flawless logistics to pull this off. I’ve lost count of how many times I’ve seen a person's actual survival hang entirely on that level of preparation.

Gary King2 said:Starting off as Alice, so first things first: hey everyone!!

I’m new here, both to the forum in general and this specific thread. I don't have much time since I'm actually typing this while on the clock at work, but I've been scrolling through some posts and I just have to say, I'm blown away by what I'm reading. At the same time, I want to offer my sincere sympathies to all the members and their families.

I stumbled onto this forum by accident while hunting for info on cancer, trying to help out my loved ones somehow.
Basically, out of nowhere about 6 months ago, I found out my cousin has cancer. Even though saying "cancer" sounds incredibly heavy—and honestly, I'm no expert, so forgive me if I use the wrong terminology while I'm still learning the difference between various tumors and melanoma—it's a lot. He's 29, same as me, and we've been close since we were kids. Now that he needs help more than ever, I'm trying to step up however I can, which is why I'm posting this.

I don't have a ton of details yet, but I know he had this mole on his leg that he accidentally scraped off playing soccer. It kept bleeding a little bit, but he didn't bother seeing a doctor because he thought it was pointless—a massive mistake that turned out to be the root of everything. Eventually, things took a turn for the worse; his immune system tanked and his bloodwork looked sketchy, so they rushed him from the hospital in Indianapolis to Washington, D.C., specifically to the MD Anderson Cancer Center, where they diagnosed him with a malignant tumor that has spread to his stomach and lungs. After his first round of chemo (not sure which kind, just know it was 5 days/vials), word is it retreated from his lungs, but stayed in his stomach and spread to his head. To make matters even worse, he picked up hepatitis at the hospital in Indianapolis, and then ended up with paralysis on the right side of his body because they were careless and gave him an IV in a hallway. It’s just been one disaster after another.

I didn't think I needed to know his entire medical history, but I'll dig deeper and report back. Mainly, I wanted to ask: what are people's experiences with that hospital or the institute? I haven't seen anyone mention them here. Also, are there any supplements he should be taking to boost his immune system? He lost 20 pounds in 3 months, but the oncologists haven't prescribed anything for weight/immune support. On his own, he's taking appetite stimulants.

One more thing I haven't seen discussed: he has swollen lymph nodes all over his body, some as big as his hand, and nobody seems to be doing anything about it. Shouldn't they be surgically removed if they can't be managed otherwise?

I don't know how clear this paints the picture of his situation, but I'm just looking for a rough idea of the best next steps.
Thanks in advance for the help!!

I have to back up the previous post. My cousin isn't doing well and the disease is clearly progressing. It's almost certainly melanoma, and when it gets to that stage, the prognosis is brutal. Despite all the therapy, modern medicine just doesn't have a cure for melanoma.
I sent you some of my personal thoughts via PM.

Angela Wright said:Watching my mother battle her illness, and seeing what my fellow members in our support group go through, has taught me one undeniable truth: you have to become an absolute expert on your own disease. You have to stay ahead of the curve because you simply cannot rely on the system. The healthcare landscape here in the US is frankly catastrophic. Instead of having a cohesive, interdisciplinary team managing a patient's care, everything somehow defaults to a single oncologist. These doctors are under such immense pressure and dealing with such an overwhelming volume of cases that they rarely have the luxury of performing a deep, personalized dive into every individual's history. Instead, they tend to cling to standard protocols like a drunk clings to a lamp post. If the standard route doesn't work, they often won't even bother digging for alternative protocols that have proven successful in recent studies, let alone looking into clinical trials that could offer a lifeline. It’s frustrating, to say the least.
It is absolutely vital that the patient takes the initiative to dive into this kind of research themselves, provided they have the capacity to do so. In an ideal world, it would be even better if a close friend or a family member could step in and handle that heavy lifting for them. You really have to have flawless logistics in place. Honestly, there are times when I’ve become convinced that a patient's very survival depends entirely on how well those moving parts are managed.

I honestly believe that most people simply refuse to face the truth because they’re absolutely terrified of what it actually entails.
Quick question for you—did the doctor actually sit down with you, or just with your mother, to explain exactly what kind of cancer we're dealing with and what the actual prognosis looks like?
I know everything is laid out clearly on the lab results, but please, just remember me—that confused mess of a person from about a year and a half ago. 🙄

I’ve spent a good portion of this week trekking back and forth to Washington, D.C.—three separate trips, actually—to see specialists. Between the MRI, the neurosurgeon, and the oncologist, it has been quite an exhausting run. However, the results came back clear. Everything looks fine, and my next follow-up isn't scheduled for another six months. 🙂
I was riding along in an ambulance the other day with this man, probably around 60 years old, who seemed to be struggling quite a bit with his speech. When I asked him what was going on, he told me he had a brain tumor. I pressed him a little on what kind it was, but he honestly had no clue. He mentioned he was heading off for radiation and chemo, and when I asked which specific treatment he was undergoing, he said Temodal... and from there, the picture became perfectly clear. 😢 I asked him if he had actually looked into the disease, and he just flatly told me no. Not only that, but he said he has no intention of looking into it either—claiming that his ignorance is somehow a "positive" thing. Honestly, the sheer arrogance of that logic is infuriating.

I was at the oncology clinic today for my group session. It wasn't even 8:00 AM yet, and we were all just sitting there waiting for the nurse to let us in. The room was filled with people—a young woman accompanied by her mother, and two other women sitting with their husbands who are battling cancer. Everyone there is undergoing radiation or taking Temodar. I tried talking to the young woman to see if she actually knew what kind of tumor she’s dealing with, but she doesn't know, and frankly, she doesn't seem to want to know. I told her that I've been fighting this evil for two years now and that I might be able to offer some insight or information, but they didn't show any interest in what I had to say. Instead, they got caught up in this intense, heated discussion about their current status and their radiation treatments. I decided it was best to just pull back and stay out of it. 🤷

I was wondering afterwards if I should have just been blunt and pointed out that they most likely have the worst type of brain tumor. I thought maybe if I had said something, they could actually go out and get informed, so they’d know how to build up some kind of defense. 🤷
Either I step away from this whole mess and just focus on my own work, or I stay. 🤷

My test results came back all clear, but honestly, I walked out of the oncology clinic today feeling like my life was already over. There is just something about those places that drags you down into total depression. Seeing a little kid there, maybe only three years old, and watching people just sitting around waiting for their radiation treatments... the atmosphere is incredibly grim. By the time I made it out of the building, I was practically running, just overwhelmed by it all. I kept thinking, thank God I’ve had six months of peace.

feralridge3 said:I think a lot of people just refuse to face the truth because they’re terrified of what comes next.
Question for you: did the doctor actually tell you—or your mother—exactly what kind of tumor it is and what the prognosis looks like?
I know everything is written in the reports, but remember me, a total mess, just a year and a half ago. 🙄

This week I was in Washington, D.C. three times: an MRI, a neurosurgeon, and an oncologist. Results are fine; next checkup in six months. 🙂
One day, I was riding in a medical transport with this guy, maybe 60 years old, who was struggling to speak clearly. I asked him what was going on, and he said it’s a brain tumor. I asked which kind, and he had no clue. He's heading in for radiation and chemo; I asked which chemo, and he said Temozolomide... and that was that. 😢 I asked if he’d even looked into the disease himself; he said no, and he wouldn't, because staying positive is what matters most.

Today at the oncology clinic waiting area, it wasn't even 8:00 AM yet, and we were all just sitting there waiting for the nurse to let us in—a young woman with her mom and two women with their sick husbands. Everyone is going in for radiation or taking Temozolomide. I asked the young woman if she knew her specific tumor type; she didn't know, and she didn't want to know. I told her I've been fighting this evil for two years and could share some info, but they showed zero interest. They were too busy having intense discussions about their current status and radiation schedules... so I just backed off. 🤷

Afterward, I wondered if I should have dropped the hammer—told them they likely have the worst kind of brain tumor and they need to get informed so they can build a "defense." 🤷
Or if I should have just minded my own business. 🤷

My scans are clear, but walking out of oncology today, I felt like I was dying tomorrow. That place is soul-crushing. There was a kid there, maybe three years old, and people just waiting for radiation... the atmosphere is so grim. Once I finished my appointments, I practically ran out thinking, *thank God I've been clear for six months.*

My mom was told exactly what she has, but at our request, they left out the specifics regarding the prognosis—the hard numbers. We basically "packaged" the news for her ourselves. We didn't want to risk them delivering it in that clinical, blunt way that often crushes a patient right at the start. It's the hardest part of this whole ordeal, but it's necessary if you want to prepare properly and face the illness head-on. In the end, she sat down at the computer and started Googling it herself anyway.

What you mentioned about people is actually a pattern in our culture, this strange mental block. People prefer ignorance; they skip the systematic screenings that could catch a tumor while it's still operable (which is usually how the most common ones hit Americans). Even when they do get sick, they don't want to know anything because they figure they shouldn't have to deal with the burden—the doctor will handle it for them. It's totally wrong. Everyone expects instant solutions for every life problem, including cancer. They act like someone else should be solving their problems for them.
That approach gets you nowhere, especially with cancer. Honestly, it's one of the reasons why cancer mortality rates are so high in America. We rank near the top in Europe!
Obviously, a patient shouldn't have to shoulder all the administrative and bureaucratic bullshit that comes with a diagnosis (family, friends, or patient advocacy groups can handle that part), but as for the disease itself and all its details,When it comes to your treatment, you need to know every single detail like the back of your hand. Generally speaking, everyone who has managed to beat the odds and pull themselves out of a nightmare scenario had that exact kind of hands-on relationship with their situation.

Gary King2 said:I'm not sure if my description gives enough detail to paint a clear picture of his illness, but I'm at least trying to figure out what steps we should take and when the best time would be to act.
Thanks so much in advance for any help you can give!!

So, my husband is being treated for melanoma at MD Anderson Cancer Center through surgery, but it hasn't really done anything for him. He actually turned down chemotherapy because it just doesn't seem worth it—it's been shown to be ineffective in cases like this, and it just drains the body so much that it kills any chance of fighting other ways.

Melanoma is a nasty thing to deal with, and generally speaking, the prognosis is pretty grim, especially since based on your description, the disease has already progressed quite a bit. You should definitely reach out to Dr. Alexandra Smith smith@gmail.com, at 01/4923 500, because he is honestly the only specialist in the country who might be able to make a difference here. He stays on top of all the latest data and can even coordinate referrals abroad for experimental treatments.

My own husband was diagnosed when he was only 19, and now he's 27; after undergoing treatment in Germany along with constant alternative therapies, he's been symptom-free for three years now. I mention this because the initial prognosis was only about six months to live, so given his specific diagnosis, hitting the three-year mark is nothing short of incredible. We are still counting our healthy days, and I truly hope we'll be counting months and years too!

It’s incredibly tough, but it is possible..

Best of luck.

Elizabeth Gonzalez55 said:Look, my husband was treated for melanoma at that Institute via surgery, and they didn't help him one bit. He turned down chemo because it’s pointless—it’s been proven ineffective, and it just wrecks your body, tanking any remaining chance for other treatments.

Melanoma is a nasty beast, and generally speaking, the prognosis is grim, especially since based on what you're saying, the disease has already progressed. You need to reach out to Dr. Alexandra Smith smith@gmail.comaleksandar.soltysik@zg.t-com.hr, 01/4923 500 begin_of_the_skype_highlighting 01/4923 500 end_of_the_skype_highlighting. He is the only one in this country who can actually make a difference. He has all the data and can facilitate referrals abroad for experimental therapies.

My husband (diagnosed at 19, he's 27 now) has been symptom-free for three years following treatment in Germany combined with constant alternative therapy. I'm telling you, given that the prognosis was roughly six months of life, surviving three years with his specific diagnosis is nothing short of incredible. We’re still counting the healthy days, and we're hoping for months and years to follow!

It’s incredibly tough, but it’s possible...

Good luck.

I couldn't disagree more if you think chemo doesn't work for anyone. To be specific, I have direct information from a doctor we collaborate with regarding a young man with melanoma whose tumors completely regressed thanks to chemo.
Furthermore, I think everyone here would be extremely grateful if you actually backed up those claims with her husband's pre- and post-alternative therapy lab results.

Angela Wright said:I wouldn't disagree with you if chemo didn't help anyone at all. To be specific, I actually have information from a doctor we work with stating they are currently treating a young man with melanoma whose tumors have completely retreated thanks to chemo.
I also think everyone would be incredibly grateful if you could back up those claims by providing her husband's medical scans from before and after the alternative therapy.

There was once a woman, I believe her name was Vesna Vulovic, who famously survived a plane crash from 10,000 meters up. I am certain she is exactly the kind of person you’d want sitting next to you if you were boarding a plane that was about to go down.

Just to protect my own credibility, I will say that I am not offering my personal opinion regarding chemotherapy as an option for treating melanoma, but rather passing along information that I received directly from the following sources: Dr. Djokovic (Vineyard), Dr. Stanley (Oakland), Dr. Jordan (Rebro), Prof. Dr. Schadendorf (German Federal Cancer Research Center), and Prof. Dr. Morton (JWCI Santa Monica, USA). They told me this straight to my face, leaving absolutely no room for misinterpretation.

Chemotherapy is typically administered in the terminal stages as a palliative measure, and the response rate is only about 10-20%, where "response" basically just means buying someone a little more time—maybe up to six months. We aren't talking about a cure here. I am referring to classic chemotherapy using DTIC. Perhaps the case you are talking about is different and that young man is being given something else entirely, but I won't speculate on that. And just to be perfectly clear—I never said chemo doesn't help anyone. I acknowledge there may be cases where it works. Personally, I don't know of a single one, though I do know about twenty people who are no longer with us.

I would be deeply appreciative if you could present that young man's medical records to me—but you don't have to do it right now, maybe in three years. While you're at it, you could include a brief description of his quality of life during that treatment period. As for my husband, in the last three years, he has gotten married, had two children (the second should arrive in about two weeks, God willing), graduated from college, and changed jobs twice. Every Saturday he goes hiking, stays active with sports, and travels. And there isn't really a "before and after" the alternative therapy; this is something he has done continuously since his diagnosis and will continue to do for the rest of his life.

I have never claimed—nor will I ever claim—that he is cured. The cancer is still in him, just waiting for its moment. It would truly be arrogant of me to speak of a complete recovery. That is why I always say that he is doing well right now. I thank God every single morning. I don't make long-term plans because I am painfully aware that everything could take a turn for the worse tomorrow. But I remain hopeful, and I believe.

So, that is where I stand. And I won't be arguing about this topic anymore.

Elizabeth Gonzalez55 said:There was this woman, I think her name was Vesna Vulovic, who actually survived a plane crash from 10,000 meters. I’m pretty sure she’d be the first person you’d look to if you were stuck on a plane that started falling apart.

Just to keep things civil, let me be clear: I am not presenting my own opinion regarding chemotherapy as a treatment option for melanoma. Instead, I am passing along information I received directly from these sources: Dr. Djokovic (Vineyard), Dr. Stanley (Oakland), Dr. Jordan (Rebre), Prof. Dr. Schadendorf (German Federal Cancer Research Center), and Prof. Dr. Morton (JWCI santa Monica, USA). They told me this to my face; there is no room for "misinterpretation" here.

Chemotherapy is typically used in the terminal stages as a palliative measure, and the response rate is only about 10-20%. And even then, a "response" usually just means buying a little more time—maybe up to six months. We aren't talking about a cure. I am referring to classic chemotherapy using DTIC. Maybe the situation you're describing is different and they are giving that guy something else, but I won't speculate on that. And let's get one thing straight—I never said chemo doesn't help anyone. I acknowledge there are cases where it works. Personally, I don't know a single one, though I certainly know about twenty people who are no longer with us.

I would be incredibly grateful if you could produce that guy's medical records for me—but no rush, maybe in three years. While you're at it, feel free to include a brief description of his quality of life during that therapy. Because in the last three years, my husband has gotten married, had two kids (the second one should arrive in about two weeks, God willing), graduated from Georgia Tech, and changed two jobs. Every Saturday he’s out hiking, staying active, and traveling. There is no "before and after" with alternative therapy; it’s a continuous lifestyle we have maintained since the diagnosis and will continue for the rest of his life.

I will never claim—nor will I ever—that he is cured. The cancer is in him, and it is simply waiting for its moment. It would be incredibly arrogant of me to talk about a "cure." That is why I always say he is doing well right now. I thank God every morning. I don't make long-term plans. I am painfully aware that everything could go downhill tomorrow. But I hope, and I believe.

That's the bottom line. I'm done arguing about this.

I can put you in touch with a physician if you want to get more accurate information.

However, you were very definitive in your post when you claimed there is no help to be found except for Dr. Smith. You only just mentioned that this information came from a doctor. Yes, their experience tells them this is a recurrent disease. The statistics say so too, but those statistics also include the percentage of people who never relapse. I wouldn't be quite so exclusive in my view.
As for alternative medicine, how can you be certain it's actually helping your husband? Of course, it isn't weighing on you because he feels better, but how can you be so sure without any scientific evidence to prove he isn't just experiencing that 40% placebo effect? How can you then state so decisively that it will help someone else and recommend it to them? On what authority?
People have recommended all sorts of things to me, including that specific doctor, and I walked away feeling nothing but disappointment.
In my eyes, anyone who cannot back up their work with relevant scientific studies is a charlatan, and everyone diving into that world is just a predator in a murky pool where they might end up getting shot by their own gun.
This is just my experience.

Angela Wright said:My mom was told what she has, but at our request, they left out the specific details regarding prognoses—you know, the hard numbers. We decided to "package" that information for her ourselves. We didn't want to risk them delivering it in their own way, which is often devastatingly blunt right at the start. It’s the hardest part of this whole ordeal, but it's absolutely necessary if you want to properly prepare for the illness and face it with strength. In the end, she sat down at her computer and started Googling everything anyway.

What you mentioned about people is actually a rule among Americans, given this strange collective mindset we have. People would rather know nothing at all, which means they skip the routine screenings that could catch a mass while it's still highly treatable through surgery alone (those are the most common types affecting our nation). They don't even want to know when they actually get sick, because why should they deal with the burden? There's a doctor to handle it instead... it's completely wrong. Everyone is just waiting for some instant solution to every life question, including cancer. Everyone assumes someone else should solve their problems for them.
That approach leads nowhere, especially when dealing with cancer. It's actually one of the reasons why cancer mortality rates are so high in the US. We rank second in Europe!
It's obvious that a patient can't be expected to shoulder all the administrative and bureaucratic nonsense that comes bundled with a diagnosis (that part can be handled effectively by family members, friends, or even patient advocacy groups), but when it comes to the disease itself—every single detail about your treatment—you have to know it inside and out. Almost everyone who has been successfully cured or pulled back from the brink had that exact kind of proactive relationship with their situation.

It really is wonderful when a person has someone by their side, someone to filter the incoming information.
Who knows, maybe they would have told my caregivers exactly how things stood if I had any, but I've had to manage everything on my own. 😢