Support resources for families dealing with cancer and other serious illnesses

crimsonwalker20 said:I never thought I’d be the one posting about this. No matter how much you try to bury your feelings or convince yourself that things like this happen to other people—not to you, not to your family—reality eventually hits. Four years ago, my little sister went in for what was supposed to be a routine, harmless mammogram checkup. That’s when they found the changes in her breasts. Before we could even process it, she was heading into surgery, then chemo. Things seemed to stabilize for a bit, but then came the heavy-duty stuff, the most aggressive form of treatment. Then, just last month, her attending physician sat her down and told her the chemo was doing more harm than good. It’s over. Since then, watching her has been nothing short of an agony. It’s the slow, agonizing decline of a young woman who has essentially been left at home to fade away. She is vanishing right before our eyes. Her little boys, ages 7 and 10, don't even have the words for it; when I ask them "how is Mom?", they just tell me "she has a cold." And there she is—this fragile woman, left entirely alone to face the end. I’ve tried everything I can to help, but honestly? It feels like a total failure. How am I supposed to ease her pain? I just don't know.

Have you guys looked into getting a second opinion elsewhere? There's a world-renowned expert in breast cancer treatment in Barcelona, Dr. Baselg. Have you considered seeing him?
There is always one more option to explore. Please reach out to the "All for Her" association.

Hello everyone.
I'm joining those of you fighting this, or those of us supporting family members who are. My father just had surgery. They removed most of his stomach, the duodenum, and the head of the pancreas. He’s dropped about 22 pounds, but he’s finally eating again—mostly soups, chicken, and turkey. He’s taking beta-glucan, some flaxseed oil, royal jelly, Megostat, and a little Ensure (though he claims it makes his stomach ache and refuses more). His bloodwork looks good. Everything showed up fine on the MSCT, but when they removed the diseased tissue, the biopsy revealed three infected lymph nodes from the pancreas and three from the stomach. What should we be expecting? Also, does anyone have experience with that much-hyped ImmunoAHCC? To make matters worse, during yesterday's oncology appointment, they told him he'll start a 5-day chemo round this Monday. After that, a month later, he moves into a 5-week stretch of combined chemo and radiation using the McDonald method. Since he lives far away, the doctor suggested he shouldn't stay in the hospital constantly to avoid being surrounded by other patients. I'm stuck on how to "relocate" him to Washington, D.C.; commuting daily isn't an option. We thought about renting an apartment near the hospital for him and my mother to stay in for those five weeks (except weekends), but my mother has heart issues and she's older, so I worry that won't work. If he starts feeling poorly from the treatment, it could be a disaster. I'm also wondering if the quality of care in our local area is comparable to Washington, D.C., or if we should just make the drive there every day for those five weeks. Looking for any experiences or advice. Best wishes to all.

Could someone please tell me what happens if a patient decides to refuse chemotherapy? Does their oncologist continue to manage their care, or does all medical supervision simply stop?

To give some context, after years of fighting this—dealing with three different carcinomas and undergoing 24 rounds of chemo plus months of radiation since 2004—my mother’s heart has started to fail, and she's dealing with fluid buildup in her lungs. She has become incredibly frail. She never fully recovered from her last round of chemo, yet her oncologist is still pushing for more treatment. When my mother voiced her opposition, the oncologist mentioned that the medical board would make the final call. Interestingly, after her last cycle ended, they didn't even bother following up with scans or tumor markers. My mother ended up hospitalized due to her heart condition, and her results show significant damage and shadows. Despite all of this, the medical board has still decided to proceed with the treatments.

Linda Baker51 said:Can someone please tell me what happens if a patient refuses chemotherapy? Does their oncologist continue to manage them, or does all medical care just stop?

Look, after years of battling illness—three different carcinomas and a total of 24 rounds of chemo plus months of radiation since 2004—my mom's heart has finally started failing, and fluid is building up in her lungs. She’s incredibly weak; she never fully recovered from that last round of chemo, yet her oncologist keeps pushing more treatments. When Mom stood her ground and refused, the oncologist basically said the medical board would decide her fate. After the last cycle finished, they didn't even bother checking her blood counts or tumor markers. Now, Mom is hospitalized because of her heart, and the scans show severe damage and shadows. Despite all this, the board still decided to push forward with more therapy.

She absolutely has the right to refuse chemo. Even if she stops the aggressive stuff, the doctor is legally obligated to provide palliative care—things like managing pain and symptoms—because she is still an oncology patient. Honestly, next time you see the doctor, it’s worth politely reminding them that under American law, the patient has the final say in their own treatment. It is the doctor's and the board's job to suggest options and explain the reasoning, not to steamroll the patient!
I’d also suggest taking her to an emergency pulmonary clinic immediately. They need to evaluate her, and she’ll likely need to be admitted because that pleural effusion needs to be drained via puncture, and she probably needs oxygen therapy. Normally, the oncologist should be handling this, but you'll likely find yourself stuck waiting for some "board decision" 😳 to resolve it. It’s better to bypass that bureaucracy. Be assertive, be direct about what she needs, and don't back down even an inch!

Angela Wright said:I’d also suggest taking Mom straight to an emergency oncology clinic. They can evaluate her there and will likely hospitalize her, because that pleural effusion needs to be drained via puncture, and she really needs oxygen therapy. Normally, that would fall under the oncologist's purview, but you’ll probably end up waiting forever for some "multidisciplinary team" to reach a consensus at 😳, so it might be better to bypass the bureaucracy. Be assertive, be direct with what you need, and don't back down even an inch!

Thanks for the input. Mom has actually already gone through hospitalization, the puncture, and having the fluid measured. On top of the medications she’s been on for years to manage her cancer and diabetes, she’s now taking daily diuretics, heart medication, and blood pressure pills. It’s becoming painfully clear that every subsequent round of chemo seems to do more harm than good. I honestly don't understand a medical process where they deliberately compromise a patient's overall stability with treatments that aren't even effective anymore. Fortunately, she isn't in pain, and as long as we hold off on the treatments, she’s actually living a relatively "normal" life. Sometimes I get the feeling they're using her case as a research project.

Linda Baker51 said:Thanks for getting back to me. My mom has already dealt with being hospitalized, having fluid drained, and all those procedures. On top of the medications she’s been taking for years to manage her cancer and diabetes, she’s now on daily diuretics, heart meds, and blood pressure pills. It’s painfully obvious that every round of chemo does more harm than good at this point. I honestly don't get why there's a protocol where they intentionally tank a patient's overall health with treatments that aren't even working anymore. Luckily, she isn't in pain, and as long as she isn't undergoing treatment, she actually gets to live a "normal" life. Sometimes I can't help but feel like they're just using her as a test subject for research.

Go demand straight answers and clear explanations from the doctor. That is literally what she's paid to do.

I’m in the exact same boat as you, feeling incredibly overwhelmed. Honestly, I feel like this is the only place where I can find genuine support and some actual guidance on what our next move should be. Eight months ago, my mom was diagnosed with a poorly differentiated adenocarcinoma of the lung. She underwent surgery to remove part of one lung, followed by four rounds of chemotherapy. It absolutely wrecked her. She dealt with every single side effect imaginable—nausea, vomiting, loss of appetite, hair loss. She’s lost so much weight that she’s down to just 99 pounds now. For a while, things seemed stable, but we're back in the thick of it. She started experiencing intense pain in her lower abdomen and back, which led doctors to conclude there's a tumor on one kidney and the ovaries. Here’s the part that feels impossible to wrap my head around: everyone seems to agree that lung cancer doesn't metastasize to the ovaries. It’s supposed to be practically unheard of. They are proposing two more surgeries—first the kidney, then the ovaries—but we are terrified. Given how frail, exhausted, and thin she is, we just don't know if she can handle it. Still, she’s fighting hard, staying disciplined with all her medications, herbal teas, and supplements.

Right now, her daily regimen includes noni juice, nettle tea, apricot kernel oil (Vitamin B17), honey infused with medicinal herbs, and occasionally chamomile, nettle, and yarrow mixed with Swedish bitters. We also have her on various vitamins and supplements to help improve her blood counts. Please, if anyone has advice or insights, what should we do? Can she even survive two more surgeries, let alone more chemo? Thank you so much from our whole family. Wishing you all strength and health in your own battles.

Laura Campbell said:... Please, I need advice, perspectives—what comes next? Will she be able to withstand two surgeries, not to mention the chemotherapy? Thank you all so much on behalf of our entire family!!! We wish you all the very best and plenty of health and strength in your own ongoing battles!!!

🙂 I’m certainly no doctor, but isn't it reasonable to assume this second cancer is the primary one? I mean, the one that didn't originate as a metastasis from the lungs. In my wife's case, during her third diagnosis, they identified a secondary cancer in the abdominal area and a primary one in the ovaries and bladder.

Oh goodness, dear ones, I honestly don't know what to tell you. I don't even know what I could say to myself anymore and still maintain my sanity. I've reached a point where I'm not even sure where to draw my energy from.

Regarding the surgery and chemo—I don't think anyone can give you a definitive answer. But truthfully, I find myself wrestling with the same questions: why do we take patients who are already so weakened and subject them to more cutting and then blast them with chemicals and radiation? 🤷

Hang in there...

Laura Campbell said:Just like you guys, I’m in an incredibly tough spot right now. I feel like this is the only place where I can find actual support and some useful info on what our next move should be... Basically, my mom was diagnosed with poorly differentiated adenocarcinoma of the lungs eight months ago. Since then, she's had surgery to remove part of one lung, followed by four rounds of chemo. She took those rounds hard—she dealt with almost every side effect imaginable, from nausea and vomiting to loss of appetite and hair loss. She’s lost so much weight that she’s down to just 99 pounds. Things seemed okay for a while, but the problems are resurfacing; she’s started feeling intense pain in her lower abdomen and back, which led doctors to conclude there's a tumor on one of her kidneys and ovaries. What’s strange, almost unbelievable, is that everyone seems to agree that LUNG CANCER DOESN'T METASTASIZE TO THE OVARIES—that it's practically impossible. They’re suggesting two more surgeries, first the kidney and then the ovaries, but we’re all terrified of how she'll handle them given how weak, exhausted, and frail she is... Still, she’s fighting and stays on top of all her meds, teas, honey, and everything else.

Right now, we're giving her noni juice every day, nettle tea, apricot kernel oil (vitamin B17), honey mixed with various medicinal herbs, sace, and sometimes chamomile, nettle, and yarrow tea along with Swedish bitters. On top of that, she’s taking various pills to boost her blood counts and vitamins. Please, I need advice, opinions—what do we do? Can she even survive two surgeries, let alone more chemo? Thank you so much from our whole family!!! Wishing you all the very best and lots of health and strength in your own battles!!!

It’s obvious Mom is in cachexia, and that absolutely has to be addressed with nutritional meal replacements like Prosure or Ensure. Once someone falls deep into cachexia, it is incredibly difficult to bounce back, and usually, things go downhill fast. Whether she’s actually fit for surgery right now is hard to say; it depends on her overall condition, which the surgeon has to evaluate. They weigh the risks and make the call.

I also have to point out that Mom is being overloaded with everything under the sun—from honeys and noni to those kernels that everyone clings to like a drowning man, even though they are nothing more than a heavy poison—cyanide! In that sense, she's doing her more harm than good because her liver has to process all of it, which just wears it down further. It’s no wonder she struggled so much with the chemo. Also, noni is notoriously hard on the liver, so you really should take a break from it. My strongest recommendation is to pick a maximum of three things from that entire list and definitely check with her doctor to see if any of them are causing harm or interacting with her prescribed medications. Once you settle on those three things, stick to them through the end of treatment and stop switching things up!

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And then you get some encapsulated 😳
Look, people, don't fall for these kinds of spikes. Vidatox is an unregistered supplement—it hasn't been properly studied and could be dangerous, especially when it's being pushed by some "well-meaning" anonymous user on a forum. There is absolutely no legal way to import or self-administer Vidatox here in the States.

Hey everyone, checking in after getting back from yet another surgery. The tumor came back for the third time, just above where the second one was. The first two sites are totally clear now, which is honestly just confusing my doctors and neurologists... I guess because this kind of metastasis isn't even how brain tumors usually behave.
I’m sitting here with seven different diagnoses (PhD level stuff) now, including the latest one from Memorial Sloan Kettering in New York, where we paid $4,000 just for the consultation.
The tumor is aggressive—terrifyingly so. It grows incredibly fast, doubling in size in just a month. This time, it hit the dura mater too, which they removed during the procedure. Luckily, my neurosurgeon is incredible; he always comes up with a plan and manages to get the whole thing out. I feel fine right now, but there's full-body radiation and a mountain of chemo ahead. Honestly, I'm used to the chemo by now, so that's not the hard part. The real issue is the recurrence—having to go under the knife again so soon. My second surgery was in January, the third in April... I don't know how much more my body can take, even if I am young. My doctor promised to keep operating as long as it takes, and I'm just so grateful for that.
The bureaucracy makes everything harder. The waiting lists for MRIs are insane, the staff is completely burnt out, and you can really feel the budget cuts in the healthcare system. It feels like if you aren't persistent enough, or if you don't have the money, you might not stand a chance. Let's be real—who can actually afford $8333 for a second opinion or $1167 for a cervical MRI? It's a grim situation for patients.
On a brighter note, the neurosurgeons and nurses at the hospital in Washington, D.C. are amazing. They are probably the only light in all of this. I haven't met so many dedicated people who clearly view their work as a calling rather than just a job.
The hospital just got a new linear accelerator, which should help cut down the wait times for radiation at the local clinics and the major cancer institutes, so that's a plus.

Anyway, I still love life. I'm happy every morning I wake up. I'm surrounded by people who love and support me, and I think everyone fighting this knows how much that matters. Sometimes, people just need love.

One more thing—preparing for radiation, I started taking two new supplements from Solgar, the V formula (basically massive doses of vitamins and minerals that give me energy) and an antioxidant formula. They're pretty pricey for a month's supply, but they seem to be working. Maybe it's the high vitamin intake, but my appetite is good, and the antioxidants seem to be flushing toxins out.

Best to you all, hang in there.😍

fadedtrucker5, you really ought to look into getting into a clinical trial out there. Honestly, given the nature of what you're dealing with, I think you’d be a solid candidate. Start hitting Google hard and start bugging the Americans until they point you toward an open study. Hang in there!

Angela Wright said:fadedtrucker5, maybe try getting into a clinical trial over there. I guess you’d be a solid candidate given how this disease works. Just Google it and pester some Americans until they point you toward a study. Hang in there!

I don't really follow... just tell me what I'm supposed to get out of it?
Thanks 🙂

Been quiet lately. Family stuff and my dad’s health have taken up everything. He just got back a week ago from a five-day chemo stint at the Memorial Sloan Kettering hospital. It hit him hard. He can barely keep food or liquids down. He’s dropped another 2kg, leaving him at 61kg after starting at 80kg pre-surgery. His lips look like a famous fashion critic's—cracked and burned. He’s being difficult, too. Honestly, I’m frustrated he isn't trying harder to stay hydrated. He's been on an IV for two days now. He had a bit of a meltdown. Now he's started drinking raw pigeon eggs.
He needs to finalize the details for a 35-day radiation treatment at Dr. Smith's radiology center by late May. Does anyone know if that’s located near the hospital or somewhere else? Also, I'm stuck figuring out where to house him and my mother in New York City for those 35 days. He refuses to go to a place like Philadelphia, which is what I suggested. I need to find them a place near the hospital for the month. Anyone know of any rentals nearby? I'm mostly worried about how he'll handle both radiation and chemo for a full month. I'm afraid they might send him home after just a few days. Any advice? Thanks. Hang in there...

Jesse Roberts79 said:I haven't checked in here for a while... been tied up with family stuff and, naturally, my dad's condition. He got back a week ago after five days of chemo at the Memorial Sloan Kettering hospital. It went poorly, obviously. He’s struggling to keep food and fluids down. He dropped another 2kg, so he’s sitting at 61kg now, down from 80kg before surgery. His lips look like those of some famous fashion critic—all cracked and burned. He’s being a bit difficult, too. Stubbornness is part of the illness, I suppose. I'm frustrated because he hasn't even tried to stay hydrated. He's been on an IV drip for two days now. He’s acting a bit erratic. He even started drinking raw eggs!
By late May, he needs to go see the doctor about a 35-day treatment plan at the radiology center near Dr. Peđa's clinic. Does anyone know if that's located at Memorial Sloan Kettering or somewhere else? Also, I have no idea how to handle housing for 35 days in New York City. He refuses to go to a place like Osijek, which is what I suggested. So, I need to find a place for him and my mother near the hospital for that month. Does anyone have leads on rentals in that area? Honestly, I'm just worried about how he'll manage both radiation and chemo for a full month. I'm afraid they might just send him home after a few days. Any advice? Thanks... hang in there and fight...

I think we might cross paths since I should be undergoing radiation around that time. There should be plenty of rentals nearby; maybe check Zillow for listings. Radiation doesn't hurt, so that shouldn't be an issue, though everyone reacts to chemo differently. If he can't eat, he really ought to try protein shakes to get his nutrients and calories up. Good luck!

I’ve got a quick question... I mentioned earlier that my mom passed away three weeks ago from lung cancer with metastases... and I haven't received any discharge papers yet. Am I actually entitled to get them? Who am I supposed to reach out to about this? Or do they just send everything out later on down the road? Thanks in advance...

fadedtrucker5 said:I don't really follow, so just tell me straight—what's the actual payoff here?
Thanks, 🙂

You’ll get access to cutting-edge treatments, and if you end up needing medication for the rest of your life, the pharmaceutical company running the study picks up the tab—even after the trial itself wraps up. You're dealing with a rare tumor, and because they're so uncommon, clinical trials for them are hard to come by. When they do happen, the whole goal is to recruit as many patients as possible to ensure the data actually means something.
In the US and across the globe, signing up for these studies is standard practice. I know plenty of people facing aggressive tumors with terrible prognoses who have lived for years upon years specifically because of these trials. For some, it's essentially living from one study to the next, and it works remarkably well.
If you want to see what's out there, this site lists pretty much every active study worldwide: http://clinicaltrials.gov/

dustybadger81 said:I have a question... I mentioned earlier that my mom passed away three weeks ago from lung cancer with metastases... I haven't received any discharge papers yet. Am I entitled to them? Who should I contact? Or do they just send them out later? Thanks in advance...

You’re absolutely entitled to them, and honestly, you should have had them by now. Go straight to the department head at the hospital where your mother was being treated and demand that they mail those discharge papers to your address within two days. Tell them you will "take legal action to enforce this right if they don't comply." Literally write it down exactly like that and act on it if they give you any attitude. Look, hospitals can make a killing by withholding medical records, and believe me, playing games with paperwork isn't in their best interest.

Angela Wright said:You might actually get access to cutting-edge treatments. If you end up needing lifelong medication, the pharmaceutical company running the study usually picks up the tab, even after the trial wraps up. Since you're dealing with a rare tumor, finding studies is tough—there just aren't many patients. When they do run them, the whole goal is to recruit enough people to make the data actually mean something.
In the US, signing up for clinical trials is pretty standard. I know plenty of people with aggressive tumors and terrible prognoses who have managed to live for years because of these trials. They practically live from one study to the next, and honestly, it works.
Here is the site where you can find basically every active study out there: http://clinicaltrials.gov/

Oh, thanks. I had absolutely no idea about any of this. 🙂
Unfortunately, since everything started falling apart, my husband and I have had to basically teach ourselves everything about medical jargon and tumor types just to hold a coherent conversation with doctors, ask the right questions, and try to grasp what they're telling us. In all that chaos, I never stumbled upon what you mentioned. Our only focus was just surviving and trying to figure out what was happening. I suppose I'll look into it, since my case seems to be such a curiosity, though nobody can give me a straight answer on what I actually have. The diagnoses have been all over the place—everything from PNET and kidney carcinoma to astroblastoma and choroid plexus carcinoma, until the final word from the specialists in New York that it's an anaplastic ependymoma with a proliferation index north of 70%.

I find myself reading through these posts every single day... and every time, I’m genuinely struck by the sheer strength and resilience that people carry within them. I just wanted to stop by and say hello to 🙂