Support resources for families dealing with cancer and other serious illnesses

Andrew Cruz3 said:He’s ready for palliative care, but we aren't.
I might not fully grasp the technicalities of what that entails, but our priority is keeping Mom at home for as long as humanly possible.

That means your Mom is terminally ill, and we’re looking at a situation where things won't improve in terms of hitting remission. Think of palliative care as being on the same level as curative medicine—the kind that’s been treating her until now—and preventive medicine; it’s simply the branch of medicine dedicated to caring for people in terminal stages. Palliative care is essentially that specific layer of medical support provided to a patient within... Palliative care.

We were back at the clinic again for fluid drainage—only took twelve hours this time. 😠 I'm at the ER right now. They've already run a whole battery of tests.
But they didn't tell us anything last time either, and now we're in the same boat. All I have is the discharge summary.
I'm wondering if there's any way to pay for an evacuation upfront, rather than being stuck waiting 12+ hours in the ER every single time.
The fluid also tends to build back up within a day or two, even though they told us it would take much longer—days, maybe even weeks—to finally drain away.
Does anyone actually know how to stop or even just slow down this fluid buildup?

How can I make things easier for her?

I’ve already told you exactly how you need to handle this. You can't just sit around for twelve hours waiting for someone to show you mercy! You need an assertive approach. That means you have to fight tooth and nail for your Mom—honestly, sometimes you have to be right on the edge of being aggressive, but always keeping your cool. Basically, you need to be as annoying as hell.
Both Gerta and I have already reached out to you, and in my last post, I told you straight up: if you want to deal with that water issue once and for all, you need to stop patching it up and just install some proper drainage. But that would mean Mom has to be hospitalized. Track down her doctor, grab him by the collar, and demand it! If he refuses, make him put it in writing—demand a formal, written explanation as to why he thinks it’s unnecessary. Then, go find someone else who actually will do it. Look, when it comes to stuff like this, you sometimes have to grow a stomach and get aggressive with doctors. It might not always be 100% justified, but at the end of the day, you have to fight for your own rights if you want to get anywhere, if you know what I mean.

When it comes to palliative care, those who are savvy enough to coordinate effectively with their primary care physician usually manage to pull off a solid setup at home. However, most people ultimately decide that placing their loved one in a private facility is the way to go. It’s an incredibly individual and intimate decision, and honestly, nobody can tell you exactly what to do. You have to face your own reality—your own strengths, resources, and capabilities—and make the call that serves their best interests.
I want to wish you and everyone else in your family plenty of strength and determination.

Angela Wright said:That’s the catch—nobody’s going to volunteer information. You have to go out and hunt for it yourself. Honestly, the family doctor should have been the one to lay this all out.
Basically, anyone living more than 31 miles away from the treatment facility is entitled to medical transport to the hospital, covered by Medicare.

So does that mean my dad, who lives in San Diego but is getting treated over in Jordan, is eligible for transport from Los Angeles to San Diego? Specifically, once he finishes his tests in a couple of days, is there any guarantee he can get medical transport back home to San Diego?
I should probably mention, just in case it messes with the transport eligibility, that he chose to be treated in Los Angeles instead of Miami, even though apparently regulations suggest he should've gone to Miami.

Nancy Lee said:Does this mean my dad—who lives in San Diego but gets treated over at Jordan—is actually entitled to transport between Los Angeles and San Diego? Specifically, I’m wondering if he’ll be eligible for an ambulance or medical transport once his tests are wrapped up in a few days to get him back to LA.
I should probably point out, just in case it impacts his eligibility for medical transport, that he chose to seek treatment in Los Angeles instead of Miami, which is apparently what the regulations suggest he should have done.

Look, you really need to Ask Doctor or his primary care physician about this. Most of the time, if a diagnosis can be managed locally near where you live, insurance or Medicare won't foot the bill for traveling elsewhere. I have a bad feeling they're going to deny it. 😢

Angela Wright said:You probably need to check with a family doctor about that. Most of the time, they don't want to cover any diagnoses that can be treated locally. I have a feeling it won't go through. 😢

That’s what I was thinking, too. Thanks anyway!

Since I’ve been getting my treatment over at Jordan, I’ve had the chance to chat with patients from all over the country. On my way to chemo sessions, I kept running into people from Miami, San Diego, Indianapolis, and pretty much everywhere else, all arriving via medical transport. I can't say for certain if it's some kind of unwritten rule, but it seemed like almost everyone was using an ambulance service. I honestly have no clue how they handle the follow-up checkups.

ruggedpuma47 said:Since I’ve been getting treated over at Jordan, I’ve had plenty of chances to chat with patients from all over the US. While heading in for chemo, I’d run into people coming from Miami, San Diego, Indianapolis, and everywhere else, mostly arriving via medical transport. I can't say for sure if it's a universal rule, but it seemed like almost everyone was using an ambulance or transport service. I have no idea how they handle the follow-up appointments, though.

See, my dad has been taking the bus from San Diego for a year now—for his check-ups, his chemo, his radiation... you name it. And nobody ever mentioned medical transport to us. Seriously. I suppose I'll have to look into it, but honestly, it feels pretty rude.
And today just pushed me over the edge. They have this new policy upstairs where they’re trying to get patients out as fast as possible. They want lab results done quicker and everything moving faster. I guess that sounds good on paper, but it feels like they’ve become a bit careless just to speed things up. Um, I actually wrote to Jane about it—they didn't prepare the paperwork for my dad like they originally promised. And now that he's been discharged, they've been calling him all morning. First, they want him to come pick up discharge papers, then they need to send a referral (since he's switching to oral chemo and needs a specific prescription), then he needs to go get a full blood panel done and fax the results back to them... Give me a break! They could have told him all of this while he was still in the hospital and just handled the blood work there instead of playing these games. I'm just so frustrated.

Look, I’m dealing with a tough situation here. A family member has been diagnosed with Stage 4 large cell lung adenocarcinoma, and it’s already spread to the lymph nodes somewhere behind the lungs. Since doctors usually dodge giving straight answers because they have to stick strictly to their protocols, I wanted to get some perspective. What are the actual odds that chemo will actually help, versus the risk of just destroying whatever quality of life she has left? We’re talking about a 63-year-old woman. She was supposed to start targeted therapy back in November, but they pushed it off because she had a fever and sent her over to Jordan instead. Word is, she's been "toughing it out" until recently. She hasn't made a final call yet, but she's haunted by what happened ten years ago when her husband passed away from various cancers. They gave him chemo for his lungs, and he basically crashed and died within a few days. He was still functioning somewhat before they started the treatment.

So, chemo—yes or no? I’m not looking for medical advice, just a breakdown of the "pros and cons." She’ll make her own decision eventually.

I would appreciate some advice regarding a few matters:

1. My third round of chemotherapy has been pushed back by seven days. The doctor decided I needed more rest, especially since my blood work isn't looking great. Erythrocytes at 4.0, leukocytes at 2.9, hematocrit at 0.4, platelets at 113, and lymphocytes at 47.5. While these numbers are technically below the threshold, it doesn't feel significant enough to warrant delaying the entire treatment. In your experience, what specific levels trigger an absolute requirement to postpone therapy?

2. Due to severe nausea and vomiting, my doctor recommended Emend. How much more effective is this compared to Zofran? According to the instructions, the first dose of Emend is taken before chemo, but the hospital also administers their own tablets right before the session begins. Am I permitted to take the Emend at home and then follow up with "their" medication once I arrive at the facility? The Emend comes in a three-tablet pack. Even after completing all three, is there still a risk of experiencing nausea and vomiting on the third, fourth, or fifth day?

Thank you in advance for any insights or recommendations. Greetings from Sarajevo!

Daniel Morales63 said:Unfortunately, a family member has been diagnosed with Stage 4 large cell lung adenocarcinoma, which has also spread to the lymph nodes behind the lungs. Since doctors have to stick strictly to protocols, they tend to avoid giving direct advice. I'm wondering about the odds: how much will chemotherapy actually help, and how much might it just ruin the quality of her remaining time? She is a 63-year-old woman. She was originally scheduled for radiation back in November, but they couldn't perform it due to a fever and sent her over to Jordan instead. Word is she’s been struggling quite a bit lately. She hasn't made a decision yet, but ten years ago, her husband passed away from various cancers. They gave him chemo for his lung issues, and he declined very rapidly—just within a few days. He was still somewhat functional before the treatment started.

So, chemo—yes or no? I'm not looking for medical advice, just some pros and cons to consider. She will make the final call herself.

If this were someone close to me, my answer would be no. 🙄

She passed away yesterday 🙂

We didn't take her to the hospital; we just stayed by her side until the very end.

Thanks for all the support here.

Andrew Cruz3 said:She passed away yesterday. 🙂

We didn't rush her to the hospital; we stayed right by her side until the very end.

Thank you all for the support you've provided here.

I am so sorry.😢 Hang in there. You did the right thing.

I have a few questions about my dad's latest discharge papers:
Heart and lung X-ray: Compared to the scans from March 5, 2013, there are more pronounced post-radiation fibrotic changes paramediastinally on the right, along with newly developed lamellar ventilation disturbances in the upper right field up to the lateral wall at . No new infiltration or congestion was found. There is no pleural effusion. The heart is compensated.
Fiberoptic bronchoscopy under local anesthesia: Transnasal approach. Paretic right vocal cord. Trachea is normal, tracheal carina is sharp. Both bronchial trees show moderate deformation; all openings were accessible for inspection and patent.

I think I get most of it, but I've highlighted the parts that probably need some explaining.

Also, what does "paretic vocal cord" actually mean? Does that mean it's permanently damaged, like, it won't recover?

Andrew Cruz3 said:She passed away yesterday. 🙂

We didn't rush her to the hospital; we just stayed right by her side until the end.

Thanks for all the help here.

My condolences.😢

Andrew Cruz3 said:She passed away yesterday 🙂

We didn't take her into the hospital, because I guess we just wanted to stay right by her side until the very end.

Thank you all so much for the support you've given us here.

I haven't been posting much in this thread, but I've been following everything closely. I am just so incredibly sorry, but I suppose at least she isn't suffering anymore. 😢

Kevin Bishop10 said:I was wondering if anyone could share some advice:

1. My third round of chemo got pushed back by about a week because my doctor thinks I just need a little more downtime, plus my blood work isn't looking the best right now. My red blood cell count is 4.0, white cells at 2.9, hematocrit is 0.4, platelets are 113, and lymphocytes are 47.5. Even though those numbers are all slightly under the limit, it doesn't feel like they're low enough to actually warrant delaying treatment, you know? Does anyone know what specific levels usually trigger an absolute MUST-DELAY for therapy?

2. Since the nausea and vomiting have been pretty intense, my doctor recommended Emend. I'm curious, how much better is it compared to Zofran? According to the instructions, I take the first Emend pill before the actual chemo, but then when I get to the hospital, they give me their own pills right before treatment starts. Is it okay if I take my Emend at home and then still take "their" pills once I'm at the clinic? Also, the Emend comes in a three-pill pack—once I've finished all of them, is there still a chance that the nausea and vomiting will kick in on the third, fourth, or fifth day?

Thanks so much in advance for any answers or suggestions! Sending love from Sarajevo!

From what I can tell, they won't proceed if anything is even slightly below the line. My Mom had her last session postponed because her white blood cell count was just barely under the threshold, so her doctor added five extra days to give her blood time to recover. I'm not totally sure about the other markers, but I do know she gets some kind of injection to protect her stomach from the harshness of the treatment, and honestly, I think that’s what’s saving her and helping her handle everything so well.

As for the blood counts, I definitely recommend green juices. I've been making them for Mom since her surgery, and everything except her white blood cell count has been looking great. On top of that, every oncologist we've talked to has confirmed that royal jelly and propolis are really helpful things to include.

Hang in there...

Could someone who has used Aloxi during chemotherapy share their experience? I'm wondering if it truly just helps with nausea, or if it actually provides some relief for other symptoms as well?

ruggedmarlin2 said:Can anyone who’s used Aloxi during chemo tell me how it actually works? Does it just help with nausea, or does it tone down other symptoms too?

Look, I’m on Aloxi right now for my 6th round of the FOLFOX protocol. Before this, I went through 49 rounds of FOLFIRI plus Avastin, and they had me on Emend back then. In both those cases, I never once threw up. But then, when I switched over to FOLFOX, nothing was working, and I basically lost my soul—about 32 bouts of vomiting on the first day of chemo. Once I told my oncologist, he put me on Aloxi and everything’s been fine... at least that's my take on it.
As far as blood counts go, the big thing is the neutrophil and leukocyte levels. That neutrophil number needs to be above 1.5. So, if you have, say, 0.4 times a leukocyte count of 5.0, that gives you a 2, and you’re good to get the chemo. That's some solid info for you regarding that part, anyway; I don't know about all the other parameters... hehe, I mean, I've only survived 55 rounds of chemo myself...

Can someone hit me up who’s been on Oxaliplatin? How much can you actually take before it breaks you? I’ve heard—and seen—that this stuff is BRUTAL, and people say you shouldn't go over six months. Well, I’m currently on my second line of chemo, which is the last stretch before they let me head home, and this is number six. Has anyone out there actually finished 30 cycles or something?? I met some guy from Sweden who went way past 40... seems pretty wild to me. Cheers.

wiredotter75 said:I’m currently taking Aloxi during my FOLFOX protocol—this is my 6th round—but before this, I went through 49 rounds of FOLFIRI plus Avastin, where I was also on Emend. In both of those previous cases, I never once threw up. However, when I made the switch over to FOLFOX, nothing was prescribed, and I ended up losing my soul—about 32 bouts of vomiting on the very first day of chemo. Once I mentioned it to my oncologist, they put me on Aloxi, and everything has been fine since... at least, that’s my experience.
Regarding the blood work, the crucial part is the neutrophil and white blood cell count; that neutrophil number needs to stay above 1.5. For example, if your neutrophils are 0.4 and your white cell count is 5.0, that gives you a 2, which means you're cleared for chemo. That’s the one solid piece of information I can give you regarding the labs; as for the other parameters, who knows? Heh, after all, I've survived 55 rounds of chemo myself...

Thanks for the reply, but what about the other side effects? The exhaustion, the loss of appetite, the tingling sensations...

ruggedmarlin2 said:Thanks for the reply, but what about other side effects? Weakness, loss of appetite, tingling...

OF COURSE I have them, but I don't think it's the Aloxi. Honestly, I think it's the oxaliplatin from the FOLFOX. It’s this crazy sensation with hot and cold—like, if my hands get even slightly chilly, they tingle all the way up to my elbows. Same thing if I accidentally touch ice. I also deal with brutal digestive issues. Ever since my surgery 41 months ago (with 39 months of constant chemo), my stomach is a mess. In those first few days, I'm hitting the bathroom maybe 20 times a day. After that, it "normalizes" to like 5 or 7 times. I guess I've just become an animal and gotten used to it, but my gut is constantly hurting. Appetite? Yeah, non-existent. I force myself to eat at set times. For the first 3-5 days, everything tastes disgusting—water tastes sweet, food tastes weird—but I force it down. Usually something bland like boiled rice or light soup, nothing with a heavy smell. Lately, strawberries actually worked, so I've been eating those. Weight loss is its own nightmare. Post-surgery, I dropped from 175 lbs to 130 lbs. When I started chemo, it took six months just to hit 137, and then it went up from there. I managed to reach 165, but now I'm fighting to stay above 160. I'm heading in for my 56th round this Wednesday, and I only just felt okay again 3 or 4 days ago. This round feels like it might be a bit tougher. Anything else? Chest pains, too. And sometimes I feel short of breath. Nothing major, I guess, but I definitely feel it. My doctor says it could just be anxiety. As for mood swings... I won't even go there. Other stuff? I don't really feel much else, even though their websites list a million things. I won't get into details, but my blood counts usually look okay after 18-20 days. I don't take anything special. I just mix some beta-glucan, some TPA lava, green spirulina, propolis, or maybe some aloe vera. I make sure to eat at least one banana or two pieces of fruit every day. I try to get grains in once a day too, even though I'm not exactly a health nut. Yesterday I had some sea bass with potatoes and a little red wine—of course I did. I'm basically a traveling zombie. I was born to die soon, I know that. Dukes C is incurable. But hey, miracles happen. People live, especially those with liver mets if they can get surgery. My peritoneum is a different story—billions of metastases just waiting to mutate and resist the second line of chemo. Maybe I have 3, 6, or 12 months left. Who knows. My big goal is the World Cup in Brazil. They told me after surgery I'd have 6 months, and here I am at month 41. SO YEAH, you can live forever. You can't give up. I get why older people might feel differently—if I were 70, I probably wouldn't bother with chemo because it's so much harder, even if cancer moves slower in them. But I got sick when I was 39, I'm 42 now, and yeah, I'm gonna fight until my last drop of blood. Everyone fights. We ALL love life, even if it's just for one day.
I don't take much for the meds. Just Tramal or something similar for 3 or 4 days after chemo just so I can get a little high, you know? Smalltown for the diarrhea for a couple of days. Normabel for sleep three times a week, and that's pretty much it. If anyone has questions, just ask. I'll tell you straight as a layman and a patient who's survived 41 months and 55 rounds of chemo. Cheers everyone...
Thank God I don't need a diaper or anything. Now I'm just waiting for warmer weather so I can soak up the ocean and enjoy life!