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

Hey everyone, my mom was recently diagnosed with Stage 4 lung adenocarcinoma. Based on her mutation profile, she doesn't qualify for any of those targeted therapies, so the doctors are pushing standard chemotherapy instead. My big fear is that she’s going to refuse it all because she lives in a different city, and honestly, even just making the trip out to Chicago is an exhausting ordeal for her. I know we aren't looking at a long road ahead here, but does anyone have any insight into how much time might actually be left if she chooses to skip the chemo? I'm asking based on the experiences of anyone who has dealt with a loved one deciding not to go through with treatment...

rustyowl52 said:Hey everyone, my mom was recently diagnosed with stage 4 lung adenocarcinoma. Based on her mutation profile, she isn't a candidate for targeted therapy, so they're recommending standard chemo instead. My big fear is that she’ll refuse it because she lives in a different city, and just making the trip to Chicago is exhausting for her. I know she doesn't have much time left, but how much time could she actually have...? I'm asking based on anyone's experience with loved ones who chose to skip chemo...

There is absolutely no way for anyone to give you a definitive answer. You might get a rough estimate from a doctor, but even then, there are zero guarantees. It all comes down to her immune system, her overall physical strength, and even her mental state—those variables change everything. Generally speaking, once the liver starts failing and the body begins retaining fluid, we're talking about a matter of weeks.

My dad is in the terminal stage of colon cancer. It’s not even the large intestine; he’s only got a few centimeters of small intestine left. For three days straight, he's been dealing with this brutal, non-stop diarrhea. He dropped a few pounds overnight, his vision is getting blurry, and he's feeling incredibly weak. His doctor just handed him some anti-diarrheal meds and sent him home. What can we actually do here? Is this diarrhea ever going to let up? And why is this happening all of a sudden now?

Dana Martin87 said:My dad is in the terminal stage of colon cancer. Technically, he doesn't have cancer in the large intestine, but the section involving his small intestine is only a few centimeters long. For three days now, he’s been dealing with incredibly intense diarrhea. He lost a couple of pounds overnight, he's seeing double, and he feels completely wiped out. The doctor just handed him some anti-diarrheal meds and sent him home. What can we actually do here? Is this diarrhea ever going to stop? And why on earth is it hitting him like this right now?

Who knows? That’s just the nature of this disease. Everything starts breaking down at once—his kidneys and liver are both starting to fail. That double vision could be anything from brain metastases to a sudden shift in electrolytes. At this point, the only thing that matters is keeping him hydrated and making sure he isn't in pain. In the terminal phase, providing comfort is the gold standard.
Most of the time, this doesn't last very long. Make the most of every single second you have left with him. Keep things calm, be his rock, and keep telling him that everything is going to be okay. Honestly, that’s what matters most—to people in his position, those words mean everything.
Hang in there.

Angela Wright said:(...) just tell them you're going to be okay. That’s the most important thing—it means everything to them. (... )

Oh man... I had no idea. 😳

Looking back now, I realize I should have said it. I did tell my mom, and I remember seeing this subtle shift in her expression (she was pretty non-responsive at the time). Not long after that, she passed away. 😢

Why does it matter so much to them?

Angela Wright said:Who knows? That's just how this disease works. Everything is breaking down; both his kidneys and liver are starting to fail. That double vision could be anything from brain metastases to an electrolyte imbalance. At this point, the only thing that matters is keeping him hydrated and making sure he isn't in pain. In the terminal phase, comfort is the gold standard.
Most of the time, it doesn't last long. Make the most of the time you have left with him and just hold onto some peace. Be his rock—tell him everything is going to be okay. Honestly, that’s what matters most, and it means the world to them.
Hang in there.

Unfortunately, there’s just no way I can be there by his side. I live in a different country, and between work and having two little kids at home, I don't exactly have the luxury of taking a bunch of time off.

They're driving him to the hospital tonight. He's throwing up green bile.
He was finally starting to gain some weight back, his appetite was actually decent, and he seemed to be getting his strength back. Then, out of nowhere, this happens...

He headed to the hospital the night before last and finally made it home yesterday. They pumped him full of five different IV drips, which actually helped enough for him to get some sleep last night. But now, the vomiting is back and he can't keep anything down. He says he’ll have to head back to the ER again.

How long can they actually keep him at the hospital on an IV? It clearly helps him, but it feels like since there isn't a real cure, they just don't have much interest in keeping him around.

Dana Martin87 said:He went into the hospital the night before last and came home yesterday. They gave him five IV drips and he felt better, so he actually managed to sleep last night. Now, the vomiting is back and he can't keep anything down. He says he’s heading back to the ER.

How long can they actually keep him in the hospital on an IV? It clearly helps him, but I assume since there isn't much else they can realistically do for him, they have no incentive to keep him admitted longer than necessary?

He really should be getting those IVs at home. His primary care physician should be arranging for a visiting nurse and home health services. Based on his diagnosis, he’s entitled to daily home visits lasting about 45 minutes. Since he’s a palliative patient, hospitals aren't technically designed for this level of ongoing care—they step in because hospice facilities are scarce, and how long they keep someone depends heavily on bed availability. Their priority is usually patients they can actually cure. Essentially, once they stabilize the situation slightly, they discharge him. There ought to be dedicated palliative teams within primary care that operate out of the field. Beyond that, there used to be—and I don't know if they still do—volunteer palliative teams through the American Hospice Association.
Basically, the family doctor needs to step up and get more involved. A relative of mine is a GP, and she makes it a point to regularly visit her terminal patients and administer IV fluids, so don't listen to anyone telling you that's not how it works.
EDIT:
http://www.palliativedirect.org/

Sandra Adams66 said:Oh my god... I had no idea. 😳

Thankfully I noticed it right then. I mentioned it to my mom—I can still vividly remember the slight shift in her expression (she was basically non-responsive at the time). Very shortly after that, she passed away. 😢

Why does it matter so much to them?

It’s because people don't want to be a burden or a constant source of pain and misery for those they love. It’s a sort of letting go; the person isn't fighting through cramps or intense anxiety anymore—they just peacefully surrender, trusting that everything will be alright. Having support and the reassurance that this is all natural and meant to be is vital. People who experience that kind of peaceful release often find the grieving process a little easier later on, because they've already begun the process of acceptance. Acceptance is truly the hardest part of the whole ordeal.

Angela Wright said:He really ought to be getting his IV fluids at home. His primary care doctor should be arranging for a visiting nurse and home health services. Based on his diagnosis, he’s entitled to daily home visits lasting about 45 minutes...

I suppose there should be palliative teams integrated within primary care that operate out in the field.

Actually, patients receiving palliative care have a right to home healthcare visits lasting up to 120 minutes. Generally, when a patient's condition is truly critical, a home health nurse can visit five times a week. She can also administer intravenous infusions and stay with the patient while the infusion is running. I should point out that infusions are administered based on the assessment of medical professionals, specifically in cases of dehydration or when oral intake isn't possible. An infusion isn't some miracle cure that "uplifts" a patient; it’s strictly for hydration (with the exception of glucose).

There are palliative teams in Chicago (just like in other parts of the US—there are currently 22 active ones total). Their role is symptom management—adjusting and titrating analgesics, easing nausea and vomiting, advising families on nutrition, changing urinary catheters for men, and setting up subcutaneous infusions. Those subcutaneous ones run for about 8 hours, and the family is trained on how to handle them—since they don't go into a vein, there's no fear of complications, so you don't necessarily need a nurse standing over the patient the whole time.

In Chicago, you have teams provided through local health centers. If you aren't quite sure which specific district you fall under, I guess you should check their websites and look up your street on the visiting nurse service lists. If, for example, the local health district covers your area, their mobile palliative team can come by. To get a palliative team involved, you don't even need a formal referral; you just call the number and coordinate a visit with them.

silentpanther32 said:Patients receiving palliative care are entitled to 120 minutes of home health nursing. Generally, when things get truly critical, a home health nurse can visit up to five times a week. They can also set up an IV drip and stay with the patient while it’s running. Just so we're clear, IV fluids are administered based on medical professionals' assessment in cases of dehydration or when a patient can't take fluids by mouth. An IV isn't some magic wand that "revives" a patient; its purpose is strictly hydration (unless glucose is involved).

Palliative teams exist in Chicago (just like in other parts of the US—there are currently 22 active teams nationwide). Their job is symptom management: adjusting and titrating pain meds, easing nausea and vomiting, advising families on nutrition, changing urinary catheters for men, and setting up subcutaneous infusions. Those infusions run for about 8 hours, and the family is trained on how to manage them—since it's not going into a vein, there's no fear of major complications, so you don't need a nurse sitting bedside the whole time.

In Chicago, you have teams provided through local health centers. If you aren't sure which district you fall under, check their websites and match your street against the service area lists provided by the visiting nurses. If, for example, the East District covers your street, their mobile palliative team can visit you. You don't need a formal referral to get a palliative team involved; just call the number and coordinate a visit with them.

Wow, that's a massive shift compared to back when we were in the thick of it. For my mom, the maximum we ever got was a field nurse seven times a week for 45 minutes at a time, though she’d stay longer if I wasn't solo with her over the weekend.

silentpanther32 said:Palliative patients are entitled to 120 minutes of home health care. Generally, when things get really bad, a visiting nurse can come by five times a week. They can also set up an IV drip and stay with the patient while it's running. Just to be clear, IVs are administered based on a medical professional's assessment if there's dehydration or if the patient can't take fluids orally. An IV isn't some miracle cure that "revives" a patient; it’s strictly for hydration (unless glucose is involved).

There are palliative teams in Chicago (just like other parts of the US—there are currently 22 active ones). Their job is symptom management: adjusting and titrating painkillers, easing nausea and vomiting, advising families on nutrition, changing urinary catheters for men, and setting up subcutaneous infusions. Those subcutaneous drips run for about 8 hours, and the family is trained on how to manage them—since it doesn't go into a vein, there's no risk of major complications, so you don't need a nurse standing over the patient the whole time.

In Chicago, you have teams through local health centers. If you aren't sure which district you fall under, check their websites and look up your street on the visiting nurse lists. For instance, if the local health district covers your street, their mobile palliative team can visit you. You don't need a formal referral to get a palliative team involved; just call the number and coordinate a visit with them.

Thanks, we'll definitely need this info eventually. Just not yet, not today. 😊

He was going to Merkur every single day for his IV. In Samobor, they probably can't do it through the port he has near his collarbone. His blood pressure was down to 80 over 60. Klnac and I managed to make it here for the holidays. Psychologically, that gave him a boost. His blood pressure improved, his appetite is great, and he's not vomiting or having diarrhea... He’s even climbing the stairs to the 4th floor on his own. Of course, he looks like a skeleton. But hey, he's fighting.

We're waiting for his Lonsurf to get approved. I haven't read anything great about that drug. Supposedly, it's only marginally better than a placebo. If anyone has experience with it, please let me know.

Has anyone here had any experience seeing Dr. Kristina Krpin, the pulmonologist over in Jordanica?

I’ve been reading through some of the posts here, and if anyone is already in the terminal stage, maybe give these things a shot... there really isn't anything to lose by trying. I dealt with testicular cancer myself, though I didn't try this specific approach because I’ve been strictly avoiding sugar for four years now—well, maybe the occasional square of chocolate here and there—but I managed to avoid any lymph node metastases and have been doing great since 2015 after three cycles.
By the way, they say baking soda neutralizes stomach acid and helps with weight loss. I tried mixing baking soda with lemon juice, but that didn't do anything for me at all. Some people claim that combining sugar with baking soda works, but personally, I never tested that since I wasn't at that stage yet.

http://2.bp.blogspot.com/-3KKcZ8R1b1...maplesyrup.jpg
Using honey or molasses might work instead.
Maybe a CBD oil with >50% concentration could help too. It's perfectly legal in the States, and I'd suggest looking for the darker colored oils.

I forgot to mention this part...
Boosting your immune system is absolutely critical when you're dealing with this. Generally speaking, tablets are best, and higher dosages tend to be more effective... things like beta-glucans, AHCC, Vitamin C... I remember watching some Japanese video on YouTube about AHCC that showed people experiencing fewer side effects (personally, I didn't deal with any vomiting, just occasional nausea). I can't seem to find that specific video right now; I don't recall the exact terms, maybe "AHCC mushroom extract" mycelia... or perhaps Reishi? I used to mix the powder with water because it’s quite bitter, but I did it that way so I wouldn't have to swallow a ton of capsules just to get a full dose...
Also, it's vital to cleanse the liver through detoxification so that alternative treatments can actually work. I didn't even consider this back then because everyone was pushing me so hard and I just didn't have the headspace to research everything—I hadn't even had chemo for two or three months at that point... The most intense detox involves coffee enemas, though you really need to flush with water first to prevent bacteria from traveling from the gut to the liver (or so I read somewhere)... I was actually thinking about trying a cleanse myself soon. It felt a bit awkward to even think about at first, but you get used to it... And honestly, everyone’s capacity is different; some people might only be able to hold the liquid for 10 or 20 minutes to let it work...
That's all part of the Gerson therapy, which also incorporates natural juices.
But if you ask me, that method seems to have far too much sugar. I mean, nobody is actually going to eat eight oranges just to make a single liter of juice. Plus, I suspect sugar weakens the immune system by saturating the very cells meant to defend us against tumor cells every single day.

Hey everyone, does anyone have a moment and the headspace to walk me through how cancer clinical trials actually work? What’s the deal with them, really? How do they operate under the hood? And when is the right time to start digging into the search? Thanks a million!

What kind of cancer are we talking about, and which specific type?

Sean Barrett35 said:What kind of cancer are we talking about?

It's lung cancer. Honestly, I don't know the specific type, the stage, or any of the concrete details yet. There are metastases in the lungs, the adrenal glands are involved, and they think the liver might be suspicious too. We're waiting on the scintigraphy results, which should come in about ten days. I'll have more answers this Monday. I was just curious about how the whole process works—what actually happens and what the treatment plan looks like for patients?

I’ll try to keep this brief.

Ten years ago, my mom passed away from lung adenocarcinoma when she was 60.
Now, I just found out my 68-year-old dad has small cell lung cancer.
Both were pretty heavy smokers for decades. Both quit before the diagnosis—mom a few years prior, dad almost 20 years ago.

My relationship with my dad hasn't been great these last few years—lots of emotional baggage and communication breakdowns. I kept him at a distance, but secretly, I was just glad he was healthy. He’s one of those high-energy, active guys, and I honestly convinced myself he’d live to be a hundred. It gave me some peace of mind. Until now.

Right now, I can't tell if knowing I've been through this once makes it easier or harder. On one hand, there's that "not this again" feeling, but on the other, I'm in a bigger shock than I was when my mom got sick. Back then, I didn't even realize the gravity of what we were dealing with. Now? I've been crying for days and just can't pull myself together. The only silver lining is that I’ve been seeing my psychiatrist for seven years, so I have someone who can prescribe whatever meds I need to stay level.

The worst part is that this overwhelming grief and hopelessness is the absolute worst thing I could do to myself, my dad, and the rest of the family. I know I should be stepping up, being strong, and staying positive, but at the same time, I am terrified of facing this all over again. Of course, I’m going to do everything in my power to be a rock for him because I know how this plays out, but I'm scared for myself. How am I supposed to function? How am I going to run my business? I was actually planning on having a kid soon and maybe moving abroad (my husband works overseas), and I have no clue how to balance any of that right now. I'm falling apart. I'm dying inside. No matter how old you get, you're never truly ready for stuff like this.

Anyway, thanks for listening.

Does anyone have a recommendation for a solid private oncologist? I was looking for Dr. Cepulic, but it looks like he closed his clinic. Any leads would be appreciated. Thanks!