Support resources for families dealing with cancer and other serious illnesses

Lisa Sullivan96 said:Mayo Clinic rarely issues internal referrals or handles orders on behalf of the patient. My mom has been going there for about five years, and that’s only happened maybe three or four times—and even then, it was only because she was practically begging and making a huge scene about it.
Besides, we've been told at the Mayo Clinic service counters several times that every floor operates completely independently; they aren't even coordinated by building. To quote one nurse I spoke to: "We have no clue what they're doing on the floor above us, let alone the floor below, much less in a different building."

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An internal referral can only be issued while the day hospital referral is still valid—basically, while the treatment is actively being carried out in the day unit. For my mom, her Oncologist arranged the day hospital stay specifically so she could get her labs and everything else handled all at once. It’s never been an issue.🤷

Looks like those referral forms for outpatient care are valid for a whole year starting this year, so we shouldn't have to deal with getting a new one every single month...

mistyjackal842 said:If you can afford it, just go private—maybe try somewhere like the Mayo Clinic—and then see if you can file for reimbursement, assuming they’ll even bother to pay you back. Not really related to the main point here, though. I was at Mount Sinai Hospital yesterday with my dad for an exam. It was packed, probably because of that hospital strike everyone's talking about; I'm not even sure if it's still going on. But honestly, the folks at Mount Sinai actually do their jobs—they aren't striking, at least—and they were a huge help to him. We're sticking with them. Just putting it out there for anyone who needs to know. My advice? Always get a second opinion and trust your gut when it comes to treatment. Even as a layman, I feel like I know more than people think. It just breaks my heart that I couldn't save my mother's life... she was denied therapy at Mount Sinai during a strike, and she lost her life because of it. I'm still waiting on the final word, but things are moving forward, and I really hope the people responsible for my mom's tragic death are held accountable.

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Back to the actual topic: not everyone has the cash to just go private whenever they want.
And besides, those doctors over at Mount Sinai? They're all connected, whether it's through private practice or the public system.

The people posting here are looking for advice, peace of mind, or whatever else helps them support their family members and deal with these damn diseases.

Anyway, regarding this thread, I think Angela Wright is right about the internal referrals and day hospitals, and that goes for the other hospitals too.

Angela Wright said:An internal referral is only valid while the outpatient treatment plan is active—essentially, as long as the patient is undergoing care at the day clinic. My mom's oncologist set her up through the day clinic so she could get all her labs and necessary tests done easily. We never ran into any issues with it.🤷

They ordered him internally for the puncture, but everyone else claimed they couldn't do it.
They suggested we try to get a C1 referral from his doctor so they can handle all the scheduling—though they did mention there's a chance they might push back on that, in which case he should just ask for a D1 instead.
Dad is heading to her place on Monday—we'll see how things unfold then.

Is there anyone here who receives treatment outside their home area—specifically away from their local hospital?
For instance—if you live in San Diego but would much rather receive treatment in Chicago—would you just go ahead and schedule your tests there? I'm curious how Medicare handles that kind of thing, and whether there's any actual chance they’d cover the travel expenses.

The referral needs to explicitly state "examination and testing," "processing," or "day hospital care"; otherwise, they'll use that paperwork to justify denying you everything.
Regarding seeking treatment outside your home area, Medicare can be a total nightmare when it comes to travel reimbursements if they decide you could have just gotten the same diagnostics and treatment right where you live. If they make that call, they won't give you a heads-up or a chance to appeal—they’ll just sit on their hands and refuse to reimburse the costs. You'll likely end up footing the bill for the trip yourself.

There isn't a hospital right here where I live—but even though Key West and San Diego are closer than Chicago—I'm assuming none of these costs will be covered by Medicare anyway.

driftingsurfer14 said:There isn't a hospital right here where I live, but even Key West or San Diego are closer than Chicago, so I'm guessing none of the travel costs will be covered.

Your best bet is to call Medicare and see if they'll cover the mileage to the specialist. Fight for every penny you can get—you’re absolutely entitled to it!

Dear fellow members, I’m logging on for the very first time today, and I am reaching out because I desperately need some guidance. I’ve been reading through the threads and noticed several users mentioning that they sought chemotherapy treatments at specialized clinics abroad. My father is currently battling esophageal and stomach cancer, and the situation here at Johns Hopkins Hospital has become incredibly disheartening. They initially decided against surgery because of his heart condition—apparently, an operation of that magnitude on the esophagus is far too risky; the surgeons would have to manage his heart throughout the entire procedure, which carries a massive risk of dangerous arrhythmias. So, the plan was to proceed with chemotherapy first to shrink the tumor, hopefully making surgery viable down the road. However, after waiting a grueling month and a half for our first follow-up at the Mayo Clinic, we were hit with another wall. They’ve now ruled out chemotherapy as well—again, citing the cardiac risks—and are suggesting we move straight to palliative radiation. It feels like we're being told there's nothing left to do but manage the decline. I’ve come across many stories of people traveling to international clinics where, despite underlying heart issues, doctors actually fought to provide treatment rather than just letting a patient slowly slip away. I am feeling quite desperate. If you have any information on where you went or which specialists you contacted, please, I beg of you... I know deep down that sometimes these efforts feel futile, but I simply could not live with myself if we didn't try everything. Thank you in advance for any help you can offer.
Best regards,

Grandpa's headed in for surgery this Tuesday or Wednesday, depending on how backed up the hospital is. They haven't given us any kind of prognosis yet.

Just wanted to check in briefly. Dad hasn't started chemotherapy yet—we're still waiting on a CT scan that was ordered back in mid-February—so we should have a clearer picture once that's done. For now, he's handling the preliminary tests quite well and isn't showing any obvious symptoms of Non-Hodgkin lymphoma, which is a positive sign; we're hopeful that catching this early will make the recovery process much smoother.

Sending strength to everyone out there fighting these tough illnesses—I'm sure many of you are winning those battles too! ~~~~~~~~~~~~~~~~~~~~~~~~~

We have INCREDIBLE NEWS!!!!! Mom’s lung cancer is officially in regression. Everything has finally stopped! It means the chemo is actually working. Her Oncologist was absolutely floored because the very first cycle already showed such massive results!!!! I am sending nothing but good vibes and great news to everyone out there. Hang in there.

Olivia Cook48 said:We have some INCREDIBLE NEWS!!!!! Mom's lung tumor is actually regressing. It's actually happening!!!! That means the chemo is working. Her oncologist was totally floored because the very first cycle already showed results!!!! Sending nothing but good vibes and great news to everyone else out there. Hang in there.

That's amazing!!! 👋
Whatever you guys have been doing, don't stop now! Keep it up!🙂

Olivia Cook48 said:We have some AMAZING NEWS!!!!! Mom’s lungs are actually going into regression. It’s finally happening! It means the chemo is actually working. Even her doctor was totally shocked because we were seeing results after just the very first cycle!!!! I am sending so much love and hoping everyone else gets tons of good news soon. Hang in there.

Oh man, that is just wonderful, I am seriously so happy to hear that...

James King61
I can't really offer you any concrete advice since I haven't dealt with that exact situation myself. What I do know is that at those facilities—especially where my mom was treated—they seem to write patients off way too easily. I still can't wrap my head around how they just gave up on my mother like that when she was 68. She was dealing with significant disabilities; she had even lost her other leg. But she didn't have cancer. I was fully capable of continuing to care for her. My mom never lost her will to live, either. I kept hoping she’d pull through, so I made sure to feed her in the hospital and bring her all her favorite foods. But in the end, they just... they just wrote her off and withheld the therapy she actually needed. I really hope you find someone who can give you some guidance on where to take your loved one for proper treatment.

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@driftingsurfer14/">@@driftingsurfer14

Drink tons of water during that first chemo session. You don't want all those colorful drugs just sitting in your bladder after they've done their job... hopefully there's a bathroom nearby, and the nurses will unhook the IV whenever you need to go, as often as necessary. That’s how it worked for me in outpatient, and honestly, anyone doing chemo as an inpatient is a total pushover for choosing that. Grab some bigger bottles—like more than a pint—so you aren't messing around with tiny cups and crap; it makes it easier to stay hydrated.

Regarding why Chicago if it's such a trek? Well, if everything goes perfectly, you’re looking at six round trips to Chicago every three weeks. It feels easy enough at first, but as things progress, you just get weaker. If you aren't careful, you might end up being forced to stay in the hospital toward the end of treatment because you simply can't handle the travel anymore. And let's be real, staying in a hospital isn't for everyone. Personally, I lost weight just doing outpatient, and the sleep schedule totally wrecks you because they're checking your temp at 6 AM. Plus, you can't stand the food every day, and you don't always have someone there to grab you something else. You’re lucky if visitors bring you something decent; most days you're alone, and your freedom is basically limited to the hallway or maybe some stairs if you're feeling up to it...

Also, it’s standard practice—it’s actually written in the paperwork—that if you run a fever over 100.4 between chemo sessions, you have to head straight to the ER. Hopefully, it doesn't come to that, but better safe than sorry. Things change fast. I remember this guy from a small town who was discharged after chemo feeling fine, only to have to pull over halfway between his home and San Diego because his fever spiked to 104 and he had to hit the emergency room.

I get the sentiment that everything is just on a higher level in Chicago. I actually thought the same thing, and Dr. Nemet at Mayo Clinic told me straight up: "If the protocol for this type of cancer is standardized—not just in Chicago or St. Louis, but globally—then we know exactly what we're doing and why. I have nothing against staying local, but it would be stupid to force the body through the stress of traveling 249 miles in one direction every three weeks." He also mentioned that if things don't go according to plan, we'd have to see him in Chicago anyway. I actually ended up seeing him because a colleague and friend recommended him, so I doubt he was just saying that to get me off his back. The real difference might just be the staff—whether one doctor insists more on certain chemo doses or white blood cell counts, whether they run every possible test the second a fever hits to leave zero doubt, or just their overall bedside manner and communication style.

There was also this lady in San Diego who did her chemo in the outpatient clinic there but went to Mayo Clinic for her checkups and sent them her results (can't remember which specific doctor it was). So, that kind of setup is possible. Just ask the doctors at Mayo while you still have time and decide what works best for you.

One more thing for anyone who needs it later: the hematology ward and the outpatient clinic are pretty well-run compared to other departments (I saw this while watching games or going to tests in other areas). Hygiene is solid, and they even have a few sterile units for people prepping for transplants. There are plenty of IV poles (they're old, but they work), though they're always short on beds. It would be great if they could run blood work right there on the unit instead of sending it over to the main lab at Mount Sinai (though you usually get results within a couple of hours regardless). I also read some older articles about plans to start bone marrow transplants in San Diego, saying they just needed the staff, but that never actually happened. As for the staff, I'm happy with them. You'll always find some people more chill than others, but everyone tries given how busy it is, the different patient temperaments, and the lack of space... I've also formed my own little impressions (not that they're perfect) of every doctor and nurse in hematology, so if anyone needs a heads-up later, just shoot me a message.

Sadly, my grandfather passed away the day before yesterday. He fought leukemia for three months, but he had been such a constant part of our lives for sixteen years—ever since I was ten. From the moment we first got the diagnosis, we kept holding onto this glimmer of hope that he’d pull through. It’s strange, though... during his entire stay at the hospital, he wasn't even in pain. He was actually set to be discharged five different times, but every single time, he'd catch a fever just a day too early and have to stay put. We were even getting his room ready the day before he left us; we expected him home around 10:00 AM the next morning, but he just didn't make it. We spent every single day by his side at the hospital, and honestly? I don't quite feel like he's gone. It feels more like he's still there in the hospital, just waiting for us to come pick him up.

I feel for 😢melps
you did everything within your power.

copperbison4 said:driftingsurfer14

Drink plenty of water during that first chemo session—there's really no reason to let all those colorful drugs sit in your bladder once they've finished their job. You'll likely have a restroom nearby, and the nurses will disconnect the IV whenever you need a break; at least, that was my experience in outpatient care, though anyone trying to stay hooked up while on the ward is just being difficult. Grab some larger water bottles instead of those tiny half-liter ones—it saves you the hassle of dealing with cups and other nonsense, and honestly, it just makes staying hydrated much easier.

Regarding the trips to Chicago—why choose Chicago if it’s that far away? If everything goes according to plan, there will be six round trips every three weeks. It feels manageable at first—but as things progress, you only get weaker. You might actually end up forcing them to admit him to the hospital toward the end of treatment—if he simply can't handle the travel anymore. And honestly, hospital stays aren't for everyone. Personally, I was losing weight daily—between the sleep schedule being ruined by those 6:00 AM temperature checks, the food being subpar every single day, and not having anyone constantly there to grab or cook something else... you're lucky if visitors bring you something different during their visits. Most days you're alone, and your freedom is basically limited to the hallway—or maybe the stairs, if you're feeling up to it.

It is standard protocol—as clearly stated in the discharge papers following chemo—that if you develop a fever over 100.4°F at any point between treatments, you must report to the emergency department immediately. I doubt it will come to that, but it’s better to be prepared for everything. These situations can change incredibly fast. I remember a man from a small town outside of Phoenix who was discharged after his session feeling perfectly fine, only to have his temperature spike to 104°F halfway through the drive back home, forcing him to pull over and seek urgent care mid-trip.

It’s quite clear to me that everything in Chicago operates at a higher level—I actually thought the same thing myself until Dr. Nemet over at the Mayo Clinic told me straight up: if the treatment protocol for this specific type were standardized not just here in Chicago or San Diego, but across most countries, we would actually understand the "how" and "why" behind the dosing. He doesn't have anything against the current method, per se, but he pointed out it would be sheer stupidity to force an organism undergoing chemotherapy to cycle through it every three weeks. 249 miles It’s a one-way street—and if things don't go according to plan, we'll just have to meet up in Chicago. I actually connected with him at the request of his colleague and friend, so I'm assuming he isn't just saying this to get me off his back. Any potential difference would really come down to the staff—whether a specific doctor decides to push harder for chemo based on white blood cell counts, how thorough they are with testing when a fever pops up to ensure there's zero doubt, and ultimately, their bedside manner and communication with the patient.

There was also a lady in San Diego who received her therapy at a local outpatient clinic—though she still traveled to Mayo Clinic for her checkups and sent all her test results there (I can't quite recall which specific doctor was handling her case). It just goes to show that this kind of arrangement is definitely possible—so please, do ask your doctor at Mayo Clinic while you still have the chance, and then decide for yourselves what works best.

Regarding future needs—the hematology department and the outpatient clinic are quite well-organized compared to other units (based on my observations while watching games or visiting different departments)—and hygiene is kept tidy. They even have several sterile units for those preparing for transplants. There are enough IV poles—they’re older, but they get the job done—though they always seem short on beds. It would be ideal if they could run bloodwork right there in the unit instead of sending it over to Mount Sinai (though results still arrive within a few hours regardless). I also came across some older articles discussing the introduction of bone marrow transplant procedures in San Diego, noting that they just needed more staff, but that never actually materialized. As for the staff, I am satisfied. You’ll always find a mix of personalities, but everyone tries their best despite the crowds, various patient temperaments, and the lack of space. I’ve also formed some personal impressions—not necessarily definitive—of each doctor and nurse in hematology during my treatment; if anyone needs insight, feel free to send me a private message.

Thank you for reaching out and sharing your advice 🙂
We are hoping to finally begin chemotherapy during February—but first, we have to address that ulcer, which looks quite unpleasant and has changed significantly over the last year.
Regarding the choice of facility, his LOM specialist is suggesting Key West, but since we had some rather uncomfortable experiences with the staff at that hospital, we decided that Chicago is really where he should be treated—it’s where we will all feel more confident in the doctors, which is such a vital factor for recovery. We didn't consider San Diego because, unlike Chicago, there isn't any reliable lodging available, whereas in Chicago, there is guaranteed housing where he can stay as long as necessary until he stabilizes after chemo and before heading toward Metković. He has handled all the tests so far quite well—last week they gave him corticosteroids (I believe it was Medrol), which finally reduced the swelling in his neck, though it did make him lose his voice. We bought Beta-glucan, which he takes once a day, along with plenty of beet, carrot, and apple juice. We haven't even received the bone marrow biopsy results yet, but we are just staying hopeful.

Angela Grant22 said:My grandfather sadly passed away the day before yesterday—after fighting leukemia for three months. He lived with us for sixteen years, since I was ten. From the moment we got the diagnosis, we held onto hope that he would pull through. He wasn't in any pain during his entire hospital stay; he was actually cleared to be discharged five different times, but he’d always develop a fever just a day early and have to stay. The day before he passed, we even prepared his room for his arrival because he was finally supposed to come home around 10 a.m. the next morning. He didn't make it. We were at the hospital by his side every single day, and honestly—it doesn't even feel like he's gone. It feels more like he's still at the hospital, just waiting for us to come pick him up.

😢 I am so incredibly sorry. 😢

Angela Grant22 said:My grandfather passed away the other day after fighting leukemia for three months. He’d been living with us for 16 years—ever since I was 10. From the moment we got the diagnosis, we really thought he could pull through. He wasn't even in pain while he was at the hospital. They were supposed to discharge him five different times, but he'd always catch a fever right before and have to stay. The day before he died, we actually got his room ready for him to come home because he was finally scheduled to leave around 10 AM the next morning. He just didn't make it. We were at the hospital by his side every single day, and honestly, it doesn't even feel like he's gone. It feels more like he's still stuck at the hospital just waiting for us to come pick him up.

I'm so sorry for your loss.😢

My granddad is heading in for surgery this Monday, and I'm really crossing my fingers that everything goes smoothly.