Support resources for families dealing with cancer and other serious illnesses

My kid’s been on Noni lately, and honestly, I can't even tell if it's doing much. Some days they'll just polish off a spoonful of green honey, and other times they're sipping on those Supportan or Ensure shakes. It's becoming a bit of a chore, really—we try to build in a day of rest before and after the Noni treatment, plus more breaks with the green honey. I'm assuming there was a decent amount of breathing room between the chemo sessions and starting the Noni 🤷 Can you actually take Supportan while undergoing therapy? Right now, they're getting about three spoonfuls of Noni a day.

wiredcanyon39 said:My kid is taking Noni, and honestly, I can't tell if they'll take a spoonful of green honey for five days straight or just stick to those Supportan or Ensure shakes. It’s a struggle. We usually do a one-day break before and after the Noni treatment, plus more breaks with the green honey. There was a decent amount of time between the chemo and starting the Noni. 🤷Is it okay to use Supportan during therapy? They're currently doing three spoonfuls of Noni a day.

That should be fine, but you really have to watch out with Noni; you need to build in breaks every three months because it puts a lot of strain on the liver.

Hey everyone, sending out a heavy heart because I honestly hate that we even have to gather here to talk about stuff like this.
It’s just... devastating. My husband’s father was recently diagnosed with a liver tumor, and I’m reaching out to see if there’s anyone out there with enough patience to help walk us through some of this. We are currently wandering around in a total fog of confusion, mostly because getting any straight answers feels like trying to catch smoke with our bare hands.
He’s being treated over at a hospital outside of Chicago—it wasn't where he first got his diagnosis of cirrhosis, then Hepatitis C, and finally the tumor itself. The issue is that this specific facility doesn't actually have an oncologist on staff; the specialist travels in from the big city hospitals in downtown Chicago, and since none of us could be there during his consultations, we haven't been able to get a single word directly from the oncologist. When we try to ask how things were explained to him, the staff just brushes us off, insisting they can't account for his input because he's in this semi-conscious state and barely remembers the conversations. To make matters worse, the attending physician here basically gave us the bare minimum, dodging any deep questions by claiming he isn't an oncologist and therefore shouldn't be the one giving us the granular details. All we know is that the tumor has progressed to a point where surgery isn't an option anymore; it’s metastasized to the spleen and other organs (we aren't even sure which ones yet). He’s been prescribed chemotherapy, and he’s scheduled to start his first round this coming Monday.
We still haven't even received his official discharge papers; apparently, they aren't quite ready yet.
The biggest struggle right now is the fluid retention. He’s on these diuretics that, in our opinion, aren't doing a damn thing. The GP told us to just monitor his reactions—sometimes giving him the full dose, sometimes half—but after several days at home, there hasn't been any improvement whatsoever. His skin is cracking, and honestly, he just looks more swollen with every passing day. Is it normal for these meds to show zero effect, or should we be pushing for a different type of medication?
His immune system is also cratering; he gets visibly weaker by the hour. I realize that's part of the whole grim reality of this situation, but we asked the doctor for advice on how to bolster his immunity, and her brilliant suggestion was to take Silymarin supplements to support liver function, eat some fruits and veggies, and that's it! "Nothing else is needed!" she said. It’s incredibly frustrating because I see people here discussing all sorts of supplements and immune boosters, yet we’re left to scavenge for information on the internet because the doctors won't even bother suggesting anything helpful.
In the discharge instructions he was given, they mentioned a "hepatoprotective diet" (or whatever the technical term is, you guys probably know better), so if anyone could shed some light on what that actually entails, I’d appreciate it. According to our doctor, it’s basically a diet where you can eat almost anything as long as it isn't super greasy or involves alcohol.
The last bit of direction we got was that if we had more pressing questions, we should direct them to the oncologist administering the chemo. But until then, I am pleading with anyone who has any insight into this disease to chime in. Who else can we turn to? Do we have the right to seek a second opinion at a major medical center in a place like Chicago? Are there any other treatment avenues we haven't considered? I would be so incredibly grateful for any help you can give. Feel free to send me a private message if that's easier.

urbandrifter4 said:Sending my best to everyone, though I truly hate that we even have to gather on a thread like this.
It’s devastating, but my husband's father has been diagnosed with liver cancer. I’m reaching out here hoping someone with a bit of patience might be willing to help clear things up for us; we are completely lost right now and struggling to get any straight answers.
He’s being treated in the nephrology department at a hospital outside of New York City, where he first received diagnoses of cirrhosis, then Hepatitis C, and now the liver tumor. This facility doesn't actually have its own oncologist on staff—he travels in from New York City—so none of our family was present during the consultations between the patient and the specialist. We haven't even been able to get a hold of the oncologist to hear what was said or to understand how he explained everything to the patient. To make matters worse, when we tried to talk to the staff, they brushed us off, claiming the patient is in a semi-conscious state and barely remembers his discussions with the doctor. The attending physician gave us nothing but vague, minimal information, essentially distancing himself by saying he isn't an oncologist and therefore can't provide specifics. They told us the tumor has progressed to a stage where surgery isn't an option, and it has already metastasized to the spleen and other organs (we aren't sure which ones yet). He's scheduled to start his first round of chemotherapy this Monday.
We still haven't received his discharge papers; apparently, they aren't finished yet.
A massive issue we're facing is fluid retention. He's on some pills that, in our opinion, just aren't doing anything. His primary care doctor suggested monitoring his reactions—sometimes giving him the full dose, sometimes half—but in the few days he's been home, there hasn't been any improvement whatsoever. His skin is cracking, and he seems more bloated with water every single day. Is it normal for these meds to show zero effect, or should we be looking into different medications?
His immune system is failing him day by day; he looks visibly weaker. I realize these are the natural consequences of everything he's going through, but we asked for advice on how to boost his immunity. The doctor's response? Just take Silymarin supplements to support liver function, eat fruits and vegetables, and that’s it! Nothing else needed! I see people mentioning all sorts of supplements here to strengthen the immune system, so do we really have to hunt for this information ourselves online because doctors won't even offer suggestions?
In the discharge instructions he received, a "liver-protective diet" was recommended (or something to that effect, you probably know the drill). If anyone could elaborate on what that actually entails, I'd appreciate it. According to our doctor, it basically means he can eat anything as long as it isn't heavily greasy or contains alcohol.
The last thing the doctor told us was that if we had further questions, we should ask the specific doctor administering the chemo. Until then, I am pleading with anyone who has knowledge about this disease or knows who else we should contact. Do we have the right to seek a second opinion in New York City? Are there any other treatment avenues left? I would be incredibly grateful for any help. Feel free to PM me.

The situation is grim. The fluid is building up because the liver is failing. 😢
When you see fluid accumulation this aggressive that can no longer be managed with oral medication—I assume he's on Lasix—it usually calls for emergency hospitalization.
If you aren't satisfied with how the doctors are handling things at your current hospital, do everything in your power to get him transferred to a major center in New York City, like Mount Sinai or Mayo Clinic, which are fully equipped to handle oncology patients.

Thanks! We’re going to try to find somewhere else to get him treated.

urbandrifter4 said:Greetings to everyone, though I feel a deep sense of regret that we even have to gather on a thread like this.
To my great sorrow, my husband's father has been diagnosed with a liver tumor. I am reaching out here in hopes that someone patient might be willing to clarify a few things for us, as we are currently quite confused and finding it difficult to obtain any concrete information.
He is being treated in the nephrology department at a hospital outside of New York City, where he first received diagnoses of cirrhosis, then hepatitis C, and now the liver tumor. This particular hospital doesn't have its own oncologist; instead, the specialist travels in from New York City. Consequently, no one in the family was present during the consultations between the patient and the oncologist, nor have we been able to get in touch with the doctor to hear what was actually said. When we asked how the doctor explained things to the patient, they refused to listen to our concerns, claiming the patient is in a semi-conscious state and barely remembers the conversation. The attending physician gave us very vague information, distancing themselves by stating they aren't an oncologist and therefore cannot provide specifics. They told us the tumor has progressed to a stage where surgery is impossible; it has metastasized to the spleen and other organs (we aren't sure which ones). Chemotherapy has been prescribed, and he is set to receive his first dose this Monday.
We haven't even received the discharge papers from the hospital yet; apparently, they aren't ready.
A massive issue we are facing is fluid retention. He is on certain pills that, in our estimation, aren't doing anything. The general practitioner suggested monitoring his reactions—sometimes giving the full dose, sometimes half—but in the few days he's been home, there hasn't been any improvement whatsoever. His skin is cracking, and he seems more swollen with every passing day. Is it normal for there to be no effect at all, or should we perhaps try different medications?
His immunity is weakening by the day; he is visibly fading. I understand these are the natural consequences of everything happening, but when we sought medical advice on how to bolster his immune system, the doctor's only explanation was to take Silymarin tablets to improve liver function, eat fruits and vegetables, and that’s it! Nothing else is needed! I see various supplements being mentioned here for immune support—must we truly resort to scouring the internet for such information because doctors refuse to even offer suggestions on what might help?
In the discharge instructions he received, a "hepatoprotective diet" was recommended (perhaps that isn't the exact term, as you all likely know). If anyone could elaborate on what this diet entails, I would appreciate it. According to our doctor, it simply means eating anything except for very fatty foods and avoiding alcohol.
The last explanation we received from the doctor was that if we have further questions, we should ask the oncologist administering the chemotherapy. Until then, I am pleading with anyone who has knowledge regarding this disease to offer some insight. Who else should we turn to? Do we have the right to seek a second opinion in New York City? What other treatment options might still be available? I would be extremely grateful for any information. Feel free to PM me.

I am so sorry, but unfortunately, the prognosis in this situation is not good. My grandmother passed away from metastatic liver cancer, and when she began retaining water in her legs, the hospital managed it slightly at first, but it didn't last long before it became uncontrollable and impossible to manage. Even in her stage, they didn't recommend any specific diet to her. In her case, she refused therapy immediately upon discovery; she was still doing okay back then, aside from weight loss, and she passed away a year after the metastases were found. The only solace is that she passed away without pain; she ate without trouble until her final day, and then she just drifted away within an hour one morning. Perhaps in these cases, the best course is to focus as much as possible on symptomatic relief to make the patient comfortable. Regardless, may God grant him ease, and strength to you as well.

Diana, I suspect Grandma wasn't feeling any pain because those high bilirubin levels from the liver failure likely just numbed her system. Most people end up suffocating because of the massive amount of ☕free fluid buildup in the lungs and chest cavity.

urbandrifter4 said:Sending my best wishes to everyone, though I truly regret that we even have to be discussing a topic like this.
It’s with a heavy heart that I share that my husband’s father has been diagnosed with liver cancer. I’m reaching out here hoping someone with enough patience might be willing to help clarify things for us; we are completely overwhelmed right now and having a hell of a time getting any straight answers.
He’s being treated in the nephrology department at a hospital outside of New York City where he first received his diagnosis—first cirrhosis, then Hepatitis C, and now the liver tumor. This hospital doesn't actually have its own oncologist on staff; the specialist travels in from New York City. Because of that, none of our family was present during the consultations between the patient and the oncologist. We haven't even been able to get in touch with the doctor to hear what was actually said. When we tried to explain that the patient is in a semi-conscious state and barely remembers the conversation, they just brushed us off, refusing to listen. The attending physician gave us nothing but vague, useless information, hiding behind the excuse that since he isn't an oncologist, he can't provide details. He told us the tumor has progressed to a stage where surgery isn't an option anymore; it has metastasized to the spleen and other organs (we aren't sure which ones yet). Chemotherapy has been prescribed, and he starts his first session this Monday.
We haven't even received his discharge papers yet because apparently, they aren't ready.
A massive issue we're facing is fluid retention. He’s on certain pills that, in our opinion, aren't doing a damn thing. His GP told us to just monitor his reactions—sometimes giving him the full dose, sometimes half—but in the few days he's been home, there has been absolutely zero improvement. His skin is cracking, and he seems more bloated with water every single day. Is it normal for the medication to have zero effect, or should we perhaps be looking into different tablets?
His immune system is failing him more and more every day; he looks visibly weaker. I understand these are the natural consequences of everything happening, but when we asked for advice on how to boost his immunity, the doctor's response was simply to take Silymarin supplements to support liver function and eat more fruits and vegetables. That's it! "Nothing else is needed!" I see people here mentioning all sorts of supplements to strengthen the immune system, so do we really have to scavenge the internet ourselves just to find information because doctors refuse to even offer suggestions?
In the discharge instructions he received, a "liver-protective diet" was suggested (it might not be called exactly that, you guys know the drill), so if anyone could elaborate on what that actually entails, I'd appreciate it. According to our doctor, it's a diet where you can eat almost anything as long as it isn't extremely fatty or involves alcohol.
The last explanation we got from the doctor was that if we have further questions, we should ask the oncologist administering the chemo. Until then, I am pleading with anyone who has knowledge about this disease or knows where else we should turn. Do we have the right to seek a second opinion in New York City? Are there any other possible treatment avenues left? I would be incredibly grateful for any help. Feel free to PM me.

So, he isn't in the hospital right now?
You need to list the diagnosis and the therapy, along with whatever lab results they ran. The most important ones are Potassium, Sodium, Glucose, AST, ALT, GGT, ALP, CBC, and anything else.

Angela Wright said:That’s fine, I guess, though you really have to be careful with Noni. You should probably take a break every three months since it can be pretty hard on the liver.

Well, it actually marks exactly three months tomorrow... so how long of a break are we talking about here?

Discharge diagnosis: C22.0 Hepatocellular carcinoma
diagnosis: C22.0 Inoperable hepatocellular carcinoma
C77.2 Bilateral lymph node metastasis
C79.7 Bilateral adrenal gland metastasis
C78.0 Lung metastasis
C79.8 Spleen metastasis
B18.1 Hepatitis B
K74.6 Cirrhosis of the liver
I10 Hypertension
L08.9 Cellulitis of the right lower leg
doctor's recommendations: hepatoprotective diet, Augmentin, Lasix, Aldactone, Tarka, chemotherapy.
Blood work from two days ago, taken for chemo prep
Lactate 6.5, RBC 6.41, hemoglobin 147, hematocrit 0.499, MCV 77.8, MCH 22.9, MCHC 295, platelets 132, RDW 24.3, lymphocytes 14, creatinine 230, potassium 4.6, CRP 18.0
I’ve scribbled this down a bit messily—sorry about that—but if anyone happens to know anything based on these numbers, I would be incredibly grateful.

Well, unfortunately, I guess I’m joining this thread too, even though I really hoped I wouldn't have to.
Yesterday at the hematology department, they told me my grandfather has malignant lymphoma. They gave me the specific name, but honestly, I just blanked on the exact term—I've never heard of it before.

He deals with thrombocytopenia, megaloblastic anemia, and hypogammaglobulinemia. He ended up with all those diagnoses after being mistakenly treated for TB, which turned out he didn't even have; it was actually some kind of lung lesion that the specialists at the Mayo Clinic caught during detailed testing. He's been managing these conditions for nearly a decade now, and he's doing okay. He's 85, but pretty spry—his EKG is always steady, and his blood pressure stays right around 120/80.
Two months ago, during a routine checkup, everything still looked fine. Then, out of nowhere, this massive lump appeared on his neck, and a biopsy confirmed it was lymphoma. Along with that, he started running a fever—around 100.4—but there's no sign of infection or inflammation. The doctor said it's a fairly aggressive type, but they're looking at two paths. First, there's heavy chemo, though they aren't sure he could handle it given his age. The second is a milder chemo meant to keep the lymphoma under control, whatever that actually entails. Either way, they'd remove that lymph node and put him on corticosteroids to manage the fever, since it's wearing him down (they also mentioned steroids are helpful in cancer treatment).
On Monday, his main hematologist is coming by—she's the one we trust implicitly because she worked so hard to figure out what was going on with him. By then, the final pathology results should be in, though they're already pretty certain about the diagnosis. The hospital staff mentioned she'll be the one to break the news officially; she and my grandfather have built a real bond over the last 13 years of treating him.
On one hand, I get that he's in his twilight years, but when someone is still so full of life, it's hard to wrap your head around a diagnosis like this. I'm just hoping there's an option that lets him live a relatively normal life for a while longer.

I’m just quoting myself from another thread—maybe things will be a bit more visible over here. 😢

fadedsurfer58 said:Warm greetings to everyone following this thread—it's good to see you all here!

It’s funny how life works—you spend all this time convinced that bad luck is something reserved for everyone else, only to have reality step up and deliver a massive, unceremonious slap right to your face.
My husband's mother was rushed to the Mayo Clinic last week—it was pretty intense. She started dealing with these brutal headaches, sudden bouts of disorientation, and she just couldn't hold onto short-term memories anymore. After they ran the initial tests and a CT scan, they diagnosed her with a brain tumor. To make matters even more complicated, there was some massive medical convention happening at the same time, plus a holiday weekend, so everything was backed up. We ended up stuck waiting five whole days just to get the MRI results back.

The neurologist on call—Associate Professor Basich Kes—was actually incredibly kind to us while we were waiting on the MRI results. She sat down with us, went over the CT scans, and really took the time to talk things through. She encouraged us to stay optimistic, pointing out that there’s no sign of edema around the tumor, and it doesn't look like it has drifted deep into the brain—it seems to be positioned more toward the frontal lobe. Honestly, she mentioned she’s seen much, much worse cases than this, though of course, we won't have the full picture until the MRI results come back.

We were all basically patting each other on the back, clinging to this shared sense of optimism—trying to stay positive, you know?—only to be hit by a total state of shock once those MRI results finally came in. Even the neurosurgeon was staring at us, genuinely baffled as to how we hadn't noticed anything sooner.
My husband's mother is honestly such a vibrant, bubbly, and energetic woman—the kind of real firecracker who’s always on the move. She’s a scientist with a high-stress career, yet she almost never complained about headaches, and even when she did, they were nothing more than minor, seemingly benign nuisances. Her vision was perfect, her mood was incredibly stable, and she didn't deal with any memory lapses... there was absolutely nothing to suggest that anything at all was actually going on inside her system.

The tumor is substantial—it’s actually spreading across both hemispheres of the brain—and because it's positioned so centrally, there's a strong suspicion that we're looking at a glioblastoma. We won't have any real certainty, though, until we get the results back from the biopsy this coming Tuesday.

It’s funny how that works—when it’s someone you care about who ends up in this kind of situation, suddenly you feel like you have to mobilize the entire world just to make sense of it. You start calling everyone you know, scouring your contact list for friends or anyone with a single connection to a hospital system. It’s that desperate attempt to find an edge, really. Because honestly, there’s nothing quite as paralyzing as that sheer sense of helplessness.
And it feels like we’re stuck—completely and utterly hamstrung in this whole situation.

I’m reaching out to all of you because I could really use some advice.
I’d love to get some more input here—specifically, does anyone have a solid recommendation for a good neurosurgeon? I was at the Mayo Clinic recently, and they told me that Dr. Paladino isn't taking patients anymore and that getting an appointment with him is basically impossible now. (Honestly, what?? That’s news to me. Even though I’m not exactly a medical professional, I still make an effort to keep track of the big names in the field, and from everything I’ve heard, he’s still very much active.)
I’ve got an appointment this Monday with my neurologist, Dr. Demarin—to finally get her take on everything and see if she has any specific neurosurgeons she’d recommend. Though, honestly, it feels like everyone else in the medical field is already singing from the same songbook when it comes to the prognosis.

I’m also considering heading over to the Cleveland Clinic to go over my test results. I honestly don't know what I'm hoping to achieve by going—it feels a bit like sitting there just waiting to surrender to the inevitable. I've been reading up on some experimental procedures involving injecting radioactive iodine directly into the center of a tumor, but I'm at a total loss as to where or from whom I can actually get more concrete information on that.

I honestly don't know what to do anymore—we are completely lost. My wife has been at the Mayo Clinic for a week now, and she’s actually cheerful and in great spirits. She has no idea what's happening to her, nor does she realize how long she’s actually been hospitalized... which, as terrible as it sounds, is a blessing in disguise. Even though her short-term memory is shot—she’ll forget we were just out for a walk thirty minutes ago, for instance—she’s still *her*. That same bubbly, energetic spirit she's always had.
They’ve got her on Mannitol and Versed—one to help draw the fluid out of the cells and the other just to keep her asleep. As for headaches... she isn't complaining about those.

Sorry for the long-winded post, but I think you all get where I’m coming from. It’s gut-wrenching to feel like there’s absolutely nothing left to be done—it just sits heavy in my chest. I keep spiraling, wondering what the most humane path actually looks like for her. Is it better to just bring her home, stay by her side, and essentially sit there helplessly waiting for the end?
Or do we opt for the radiation route and potentially drag out the suffering... for how long... maybe two or three months? 😢

I’m just not ready to throw in the towel, and I refuse to just sit on my hands waiting for nature to take its course. I want to try everything—experimental drugs, clinical trials, whatever else is out there... we just have to know for ourselves. 😢

Thanks. If anyone has any advice or perspective, I’m all ears. Wishing everyone the best of luck in your own battles. 🙂

urbandrifter4 said:Discharge diagnosis: C22.0 Hepatocellular carcinoma
diagnosis: C22.0 Inoperable hepatocellular carcinoma
C77.2 Bilateral lymph node metastasis
C79.7 Bilateral adrenal gland metastasis
C78.0 Lung metastasis
C79.8 Spleen metastasis
B18.1 Hepatitis B
K74.6 Cirrhotic hepatitis
I10 Hypertension
L08.9 Cellulitis of the right lower leg
Doctor's recommendations: liver-protective diet, Augmentin, Lasix, Aldactone, Tarka, chemotherapy.
Blood work from two days ago, taken for chemotherapy:
Lkc 6.5. erythrocytes 6.41, hemoglobin 147, hematocrit 0.499, MCV 77.8, MCH 22.9, MCHC 295, platelets 132, RDW 24.3, lymphocytes 14, creatinine 230, potassium 4.6, CRP 18.0
The handwriting is a bit messy, my apologies, but if anyone happens to know anything based on this, I would be grateful.

Unfortunately, what you have shared here is quite grim. From what I can gather, there is a liver tumor with extensive metastases in the lymph nodes and lungs, compounded by hepatitis and cirrhosis. As I have mentioned before, anyone attempting to offer "well-meaning" advice at this stage would merely be suggesting symptomatic therapy. One must eliminate fluid intake as much as possible (personally, I have observed a woman with failing liver function where they had to drain entire buckets of fluid from her abdomen); something for pain management; and, looking at these blood results, the kidneys are in very poor condition. Truly, what could one possibly hope to achieve with chemotherapy here? More importantly, would the patient even be able to endure such treatment given the current state of the liver? I sincerely wish this patient nothing but the most peaceful days possible.

wiredcanyon39 said:It's actually been three months tomorrow, so how long is this break?

At least one full month, definitely, just to give the liver some breathing room.

urbandrifter4 said:Discharge diagnosis: C22.0 Hepatocellular carcinoma
diagnosis: C22.0 Inoperable hepatocellular carcinoma
C77.2 Bilateral lymph node metastasis
C79.7 Bilateral adrenal gland metastasis
C78.0 Lung metastasis
C79.8 Spleen metastasis
B18.1 Hepatitis B
K74.6 Cirrhosis
I10 Hypertension
L08.9 Cellulitis of the right lower leg
Medical recommendations: liver-protective diet, Augmentin, Lasix, Aldactone, Tarka, chemotherapy.
Blood work from two days ago, taken for chemo prep:
RBC 6.5, hemoglobin 147, hematocrit 0.499, MCV 77.8, MCH 22.9, MCHC 295, platelets 132, RDW 24.3, lymphocytes 14, creatinine 230, potassium 4.6, CRP 18.0
The handwriting was a bit sloppy—my apologies—but if anyone can make sense of this, I would be so grateful.

Dear urbandrifter4, I’m no doctor, but looking at this through the lens of someone with a fair amount of experience, it seems blindingly obvious that what you’ve shared here, combined with your previous posts, points toward your dad being in the terminal stage of this illness. On top of a malignancy that has spread aggressively, he’s battling two other major liver issues plus high blood pressure. From my perspective, pushing chemotherapy at this point feels like a fundamentally flawed approach. It’s going to completely tank his quality of life, and you’ll end up losing those precious, meaningful moments left with him. What he needs right now is palliative care.
I am in complete agreement with graniteorca42
I'm so sorry. 😢

fadedsurfer58 said:Hey there, everyone hanging out in this thread!

It’s the same old story, isn't it? You go through life thinking the train wrecks only happen to other people, until reality decides to step up and slap you right in the face.
My husband's mother was rushed to the Mayo Clinic last week because she started dealing with these massive headaches, sudden disorientation, and total short-term memory loss. After they ran some tests and a CT scan, they diagnosed her with a brain tumor. To make matters even more frustrating, there was some medical conference going on at the same time, plus it was a holiday weekend, so everything slowed down. We ended up stuck waiting five whole days just to get the MRI results back.

The neurologist on duty, Professor Basich Kes, was actually really kind to us. While we were still waiting on the MRI results, she sat down with us and walked through the CT scans. She tried to keep us optimistic, pointing out that there’s no sign of edema around the tumor, and it doesn't look like it's deep-seated—it seems to be positioned more toward the frontal lobe. She mentioned she’s seen much worse cases, though obviously, we won't know the full story until the MRI comes back.

We were all basically patting each other on the back, clinging to this desperate sense of hope, trying to keep each other's spirits up—until that MRI came back. It was a total gut punch. We just sat there in complete shock. Even the neurosurgeon looked at us like we were crazy, wondering how on earth we hadn't noticed anything sooner.
My husband's mother is honestly such a light—she’s this incredibly vibrant, bubbly, and spirited woman. She’s a total firecracker, too. She works as a scientist in a high-pressure field, yet she almost never complained about headaches; if she did, they were nothing more than minor, trivial things. Her vision was perfect, her mood stayed steady, and she never dealt with memory lapses... there was absolutely nothing to suggest that anything was actually going wrong inside her body.

The tumor is massive, spreading across both hemispheres of the brain, and positioned way too centrally. We’re looking at a suspected glioblastoma right now, but we won't have any real certainty until Tuesday after the biopsy results come back.

It’s the same old story: when someone you care about is stuck in a crisis like this, suddenly you feel like you have to go to war for them. You find yourself ready to shake the entire world just to get some answers. You start calling every contact you have, hunting down friends, or pulling every string possible to get a foot in the door at a hospital. It’s driven by that crushing sense of helplessness—that feeling that if you aren't fighting, you aren't doing enough.
It feels like we’re stuck between a rock and a hard place here, completely hamstrung.

I’m turning to all of you because I could really use some advice.
I’d love to get some more input here—does anyone have a solid recommendation for a neurosurgeon? I was at the Mayo Clinic, and they told me that Dr. Paladino isn't even practicing anymore. Apparently, he's completely stopped taking patients, and getting an appointment with him is basically impossible now. (Wait, what? That's news to me. Even though I'm not exactly a medical pro, you still pick up names and follow certain specialists, so this caught me totally off guard.)
I’m heading in to see my neurologist, Dr. Demarin, this Monday to get her take on things and see if she has any neurosurgeons she’d recommend. Honestly, though, it feels like everyone is singing from the same songbook when it comes to the prognosis.

I’m also thinking about heading over to the Cleveland Clinic to go over my results. I honestly don't know what I'm trying to achieve here, but sitting around and just surrendering to the situation feels impossible. I’ve been reading up on those experimental procedures involving radioactive iodine targeting the core of a tumor, but I have no clue where to turn or who to talk to if I want to actually get some real information on it.

I honestly don't know what to do anymore; we’re completely lost. My wife has been at the Mayo Clinic for a week now, and she’s actually cheerful and in great spirits. She has absolutely no clue about her condition or how long she’s even been hospitalized. It sounds twisted to say, but in a way, it’s a blessing. Even though her short-term memory is gone—she’ll forget we were just out for a walk thirty minutes ago—she’s still herself. That same bubbly, energetic spirit is still right there.
They’ve got her on Mannitol and Versed—one to pull the fluid out of her cells and the other just to keep her asleep. She isn't even complaining about headaches...

Sorry if this is getting a bit long-winded, but I think you guys get where I'm coming from. It’s gut-wrenching to sit here knowing there isn't a single thing we can actually do. It honestly hurts to think about what would be more humane for that woman—to just bring her home, look after her, and then spend the rest of the time helplessly waiting for the inevitable.
Should you just bite the bullet and go with the radiation option, knowing it’s going to be a grueling two or three months of pure misery? 😢

I’m not about to just roll over and take this lying down, and I sure as hell refuse to sit around twiddling my thumbs waiting for some miracle to happen on its own. I want to fight back. If that means trying experimental drugs or going after every single option on the table—whatever it takes—then that's exactly what I'm going to do. You know how it is. 😢

Thanks. If anyone has any advice, I’m all ears. Good luck to everyone out there fighting their own battles. 🙂

This is the first I’ve heard about Dr. Paladino being out of the picture. He was still seeing patients just this past summer. Regardless, Dr. Heinrich and Mrak are more than capable replacements. Based on my own experience, I wouldn't hesitate for a single second about where to go if heaven forbid something like that happened to me or someone I know again—it's the Mayo Clinic.
My advice? Get yourself over to the Mayo Clinic first. Don't start making any grand plans until you've actually sat down with them and seen exactly what kind of mess you're dealing with.
I know how heavy this feels, but honestly, everything that’s unfolding right now was bound to happen. Don't you dare give up on her treatment. Even if—God forbid—this turns out to be the worst-case scenario like a glioblastoma, the actual regimen isn't even the hardest part; dealing with radiation and Temodar is often much more manageable than some of the brutal chemo protocols used for other diagnoses. It’s about buying her more quality time. Besides, you can never truly rule anything out—who knows, there might be a breakthrough drug or a more effective treatment hitting the market just when it's needed most.
Just take it one day at a time. Deal with things as they come and don't let her get bogged down by the diagnosis. If she can perceive what's happening through her own senses, that's enough. Your description of her really hit home for me—it reminded me so much of my mother, who was just as spunky and full of life, completely oblivious to her own condition. Maybe it’s actually better that way, regardless of everything else.
Hang in there.

graniteorca42 and Angela Wright, thanks for weighing in. Honestly, we’re fully aware of all the risks here, but it feels like no matter how much everyone knows chemotherapy might be a terrible option, they still treat it like this ultimate last ditch effort—like it's the one final miracle left to grab onto. I guess I'm just terrified that if we pass on this treatment, we’ll spend the rest of our lives haunted by the "what ifs," constantly wondering if we could have bought him more time if we had just taken the leap. And then there's the other side of the coin, which nobody seems to be addressing: what if he simply can't handle it? No one has really brought up the possibility that his body might just break under the strain; instead, every single doctor we talk to just gives us the same rehearsed line: "you have to try." I'm at a total loss, honestly. I don't even know what to think anymore.

urbandrifter4 said:graniteorca42 and Angela Wright, thank you both for your responses. Unfortunately, we are fully aware of all these factors. However, no matter how questionable chemotherapy might be as a solution, it seems people view it as a final straw—as if it were the only remaining option left to pursue. I fear that if we don't proceed with this therapy, we will spend the rest of our lives haunted by the question of whether we could have achieved something more through it. Furthermore, there is the issue of whether he can even tolerate it; no one has bothered to mention that to us yet. Every doctor simply says, "just try it." I honestly don't know what to think anymore.

Greetings again. Everything I have shared with you is based strictly on the experiences of those close to me. My grandmother passed away two years ago from metastatic liver cancer; she received no treatment whatsoever, and as I mentioned, she lived for only a year after the metastases were discovered. My mother is currently battling the same thing. When she was supposed to begin chemo just over a year ago, her doctor expressed uncertainty about whether she would survive the treatment itself, given that she had just finished treating a severe pulmonary thromboembolism and required intensive care. Yet, she is still here, having endured everything, starting her first round of therapy just ten days after being discharged from the pulmonary ward. What I told you earlier is merely my own opinion, and of course, it may not be correct. It is best that you discuss this directly with him, and then I can only hope that whatever decision you make proves to be the right one. Is it true that when a person has nothing left to lose, they should perhaps take the risk, much like my mother did? In her case, it paid off. Then again, one must consider the outcome—specifically, the patient's quality of life. My hesitation stems from his current, truly dire liver condition, but who knows? Miracles do happen. Regardless, I wish you luck; I hope a miracle occurs for you just as it did for us.

Like I mentioned before, my dad was diagnosed with small cell lung cancer. He’s already finished two rounds of chemo and he's currently undergoing radiation. They’re looking at 35 sessions total. Is it actually normal to go through that many radiation treatments all at once? Right now, he's heading in every single day, and then they'll decide if he needs another round of chemo depending on how he holds up.
It just feels like a massive amount of radiation to me, so I guess I'm wondering if this is standard practice. What usually happens after a stretch like this—more chemo, or something else? I know everything depends on his specific condition, but I'm curious if anyone here has dealt with something similar.
And is it even possible that they might put him through another full course of radiation after this one finishes?

One more thing. I know you aren't supposed to take immune boosters while doing chemo, but does anyone know how they affect radiation?

Nancy Lee said:As I’ve mentioned here before, my dad is battling small cell lung cancer. He’s already gone through two rounds of chemo and is now starting radiation. They’re looking at a total of 35 sessions. Is it actually standard procedure to go through that many radiation treatments in one stretch? Right now, he’s heading in for treatment every single day, and once that’s wrapped up, they’ll decide if he needs another round of chemo based on how he's holding up.
That amount of radiation seems pretty intense to me, so I’m wondering if that's actually standard procedure. What usually comes next after a heavy round of radiation—are we talking chemo, or something else entirely? I realize the whole roadmap depends heavily on the specific diagnosis, but I'm curious if anyone here has navigated a similar situation.
Is it actually possible that they're going to hit me with another round of radiation just like this one?

It’s not about the radiation number itself; it’s about the actual dose someone absorbs over that period. Because of that, there's a real possibility they might need multiple rounds of radiation if the situation calls for it. If I recall correctly from one of my lectures, the absolute maximum cumulative dose a person can handle is around 70 Gy.

Nancy Lee said:And one more thing. I know that taking immune boosters isn't exactly recommended while you're undergoing chemo, but what about their effect on radiation therapy?

Radiation works through an entirely different mechanism than chemo, so I don't see any reason why you couldn't use both.