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

My parents are still at the hospital, and his legs have become incredibly swollen, showing signs of significant redness as well. The doctors insisted this isn't heart-related, but rather a reaction to the IV fluids. While the swelling itself seems to be subsiding slightly, fluid is actually weeping through the skin on his lower legs—so much so that his socks are becoming soaked. There aren't any open wounds, and the redness looks more like severe skin irritation. Has anyone dealt with this before? Is this considered a "normal" side effect of treatment, or should I just drive him straight to the ER?😕

feralridge3 said:That’s pretty much how I’m looking at it...
People keep asking me if I’ve finally "gotten my act together" or healed from everything. Honestly? I usually just tell them straight up—no chance.

What an incredible vibe! 🙂 I'm telling you right now—I don't ever want to see that shady guest around here again. Seriously. Just get them out of my sight. 😉

feralsurfer72 said:My dad is still stuck in the hospital, and his legs are absolutely swollen—like, insanely bloated—and now there’s this redness popping up too. The doctors are insisting it has nothing to do with his heart and that it’s just some reaction to the IV fluids. So, the swelling is finally starting to go down, but now fluid is literally leaking through the skin on his shins. It's gross. There's so much of it that his socks are getting soaked. He doesn't have any open sores or anything, and the redness just looks like really irritated skin. Has anyone dealt with this before? Is this just one of those "normal" things that happens, or should I be grabbing my keys and rushing him to the ER?😕

I haven't really dealt with this personally. My buddy’s got fluid building up in his abdomen because of the metastases, but it hasn't ever actually broken through the skin. So far, he's only had to have that ascites drained once—and that was right when he first got admitted to the hospital. Some doctor just jammed the needle in and the fluid just started pouring out.

I don’t know how things work where you live regarding family doctors, but for us, we always check in with our own first. She usually gives us some kind of guidance—like whether we actually need to drag someone to the ER, if there's something we can handle ourselves at home, or if she can just swing by for a house call or whatever. Honestly, maybe give that a shot? Either way, I’d definitely get some professional advice before doing anything else.

So, how’s your old man doing anyway?

feralsurfer72, I’d either call 911 or just ring the unit where my dad was staying. If things aren't critical yet, they can turn south fast. This whole situation isn't sitting right with me.

I drove him straight to the ER, where they administered Furosemide via IV before transferring him to emergency surgery for a popliteal artery bypass. His leg is currently bandaged, but fluid is already seeping through the dressings, and the surgeons at the hospital warned us they can't keep it wrapped like this for more than half an hour.

The discharge instructions say: symptomatic therapy and dressing changes at a local family clinic. Does this mean I’m going to be driving him back to the clinic every single day? Does anyone know if he qualifies for home health nursing services... He’s feeling quite poorly right now, so I’m rushing to finish this post; I might have to get him back in the car again soon. I'm also wondering if that dose of Furosemide has anything to do with how he's feeling currently.

feralsurfer72, as far as I know, he's eligible for home health nursing. Just tell him to call his primary care doctor at the clinic. Hopefully things settle down for his dad.

feralsurfer72 and I are on the exact same page—he really should be eligible for home health nursing. My dad actually has two nurses assigned to him. One is strictly for his ostomy care, and the other is supposed to handle everything else. But since Dad is still mobile and doing pretty well for himself, they only send the ostomy nurse right now. She handles his blood draws, bandages the surgical wound, and all that stuff. Honestly, it felt stupid having both of them coming out when he doesn't even need the extra help yet.

Back home, this whole process just happened automatically. He got discharged from the hospital, and without us even picking up the phone to ask for anything, a nurse showed up two days later because she was assigned to a new patient. It was like some little elves had handled everything behind the scenes. 🙂

Basically, you talk to the primary care physician, but I truly believe he ought to have the right to home health services.

I'm trying to track down where I can actually pick up some Paw Paw tablets... also, is there any truth to the idea that you can get pretty solid results if you pair them with a specific diet?

Carl Kern66 and John Foster38, my thanks to you both! We'll see what the afternoon brings with Dr. Miller. Our neighbor actually dropped off some adult diapers last night, so we ended up using those to wrap around his shins to try and stem the flow. The water just keeps coming. We’ve already moved on to wrapping him in a fresh set. Honestly, we're all just a bit shell-shocked.

feralsurfer72 said:Carl Kern66 and John Foster38, Thanks! We’ll see what the doctor says this afternoon. Last night, our neighbor brought over some adult diapers, so we used those to wrap around his shins. The water is still leaking through. We just wrapped him up in a fresh pair. We're all completely exhausted.

Maybe that lovely Dr. Smith wants to swing by for a home visit and actually authorize some home health care and field nursing—that’s literally what she’s paid to do. Given this diagnosis, there’s a right to daily care sessions lasting up to 45 minutes. It’s possible she might scale that back since he can still move around a bit, but honestly, having someone pop in for ten minutes a day just to handle dressings and coming by once a week to help with bathing is more than enough.
The doctor can also write prescriptions for all the bandages, wraps, and any other medical supplies needed for home care.

Skip the diapers and just grab some cloth ones from Target instead. DM one podmetače za previjanje Look, you can use disposable diapers for kids, and honestly, the training pants work exactly the same way. But let’s be clear: you still need to put sterile gauze against the skin. These things are just a backup to stop leaks from making a mess everywhere.

Figured it was finally time to jump in here. Been lurking this thread for a while now. Last year, around April, Dad started having these intense pains in his legs and ribs. After a bunch of useless tests and some wrong diagnoses from a doctor who clearly didn't know what he was doing—we ended up getting a bone scan. That’s when they found the metastases. He was admitted to oncology via the rib area, and after more imaging, they confirmed a primary lung adenocarcinoma (about 2cm) with bone metastases, mostly right where the pain was hitting him hardest. He went through eight rounds of Carboplatin and Paclitaxel, plus some radiation, which actually looked promising at first—the pain subsided and the lung tumor showed slight regression. But then, things took a turn. The cancer spread to his liver (just a little bit for now) and to his brain (which is the bigger issue). He had a brain biopsy to confirm the spread, and after that, everything just spiraled. It started with speech issues, then weakness in his legs, and now he can barely move. Lately, he's been really disoriented most of the day and mobility is almost zero. Luckily, Mom works mornings, so I dropped out of college to stay by his side full-time, and my brother works from home so he can step in whenever. For the last few weeks, sleep has been non-existent... we're basically running shifts at night. One night it's me, one night Mom, one night my brother. We take turns staying awake. Food-wise, he still eats okay because we're feeding him ourselves—someone is with him 24/7. We do small meals throughout the day, fresh juices, and some supplements like Gravil, but nothing major. So, timeline: pain started in April, hit the ribs in August, brain involvement found in February... and here we are on May 12th. Just hanging on, fully aware of how bad it is, taking it one day at a time... Decided to post here just to share the weight of it all, especially knowing how much people get judged or blamed on this thread. It's brutal when you're in this spot because you know there's no going back—you can't undo any of this—but you still pour every last ounce of strength, every cent, and every sleepless night into it...

Forgot to mention—he doesn't eat at the rehab center unless we're there visiting. They have to tie him to the bed because he’s restless and keeps trying to get up, but he's too weak and would just collapse if he tried to stand... Typing this on my phone while sitting next to him watching over him since he didn't even sleep last night, so excuse the messy typing

Gary Thomas13, is the brain irradiated? Usually, smaller targets react pretty well to radiation.
Besides, even small liver lesions can be treated surgically if they're positioned correctly and there aren't more than two or three of them.

EDIT: I just realized this is my ten-thousandth post 😁 God bless me 😛

They operated on his head, which fixed some stuff—like his eyesight being better—but honestly? He’s still mostly out of it. Like, he'll be sweet and affectionate one minute, then totally spaced out like he's high. And when he really snaps... man, he just rolls out of bed to hit the bathroom, we help him there, and he wants to crawl right back in immediately. Does that loop like ten times in a row. There are flashes where he's actually lucid, but then he starts calling us by all the wrong names—calling me his brother's name, or calling his brother someone else entirely—and even when we tell him, "Hey, focus, it's us," he's hit or miss. We were actually at Mayo Clinic about ten days ago because they wanted to do a hip scan to check for changes in his hips and head, but he was so agitated they couldn't get a single shot. Six attempts over three days, nothing. They give him something to settle him down so he can sleep, but as soon as he gets downstairs for a CT, he's up and pacing again...

...even if he tries to fake it, his speech is such a mess that he can barely get a coherent sentence out...he’s gotta talk painfully slow just to make any sense at all

Honestly, it feels like they’ve leaned way too hard on sedatives here, probably because they simply don't have the staff or the bandwidth to actually manage the situation properly. I'm not entirely sure why Dad ended up in the hospital right now, but if there is any way at all to arrange for home care, that would be much better for him.

He's back home now. We actually begged the doctor to let him out about 10 days early just so he could recover—he was totally wiped out since he hadn't been eating at the hospital, plus he kept messing with his IV lines so his arms were all bruised up... He's home for now, so we'll see what the doctor says when we head back and try to get another scan

Angela Wright said:The lovely lady doctor from the local health clinic should really come by for a home visit to set up home health care and nursing services—that’s literally what she's there for. Given this diagnosis, he’s entitled to daily nursing care for up to 45 minutes. It might be a bit less since he can still move around, but having someone stop by for ten minutes a day just for dressing changes, plus once a week to help with washing, makes a world of difference.
Similarly, the doctor can write prescriptions for all the bandages and necessary medical supplies.

Instead of relying solely on diapers, try picking up those disposable underpads used for babies at Target. They work similarly to diapers in terms of absorption. Just make sure to use sterile gauze against the skin first; these are mainly to prevent leaks.

Mom went to see the doctor from the clinic since I used to work there, so she should be arriving either this evening or tomorrow morning. She just got back from vacation today, so we'll see how everything shakes out tomorrow. For now, I grabbed some sterile gauze and layered disposable diapers over them. Angela Wright, I honestly don't know how many times I've thanked you! I still find myself feeling helpless, terrified, and completely overwhelmed quite often, but everything feels different now that I have all of you.😘

Good day, everyone.

While I have been a regular reader of this forum for quite some time, circumstances have finally compelled me to join the conversation and reach out to you all for assistance, advice, and guidance...

My father (born in 1944) was diagnosed with renal cell carcinoma in early 2006. At the time, the tumor was about 4 cm, and the prognosis looked promising. He underwent surgery to remove the kidney, but no further therapy was administered. Two years later, the adrenal gland was affected and had to be removed—again, without additional treatment. Then, a year after that, five metastases appeared in his lungs, measuring up to 12mm. For two years, he was treated with Sutent, which successfully caused those metastases to recede. However, due to the side effects of that therapy, he suffered a stroke about a year and a half ago. We had to discontinue the Sutent. While his recovery from the stroke was quite good, his condition took a turn for the worse six months ago. Recent scans revealed metastases on both the left and right sides of the pelvic bone (measuring 4 cm and 8 cm respectively), a 3 cm metastasis in the brain, and approximately ten more in the lungs, reaching up to 2 cm. His head has since undergone surgery and radiation. Additionally, he has received two cycles of radiation on the right side of the pelvis and one cycle on the left. The lung metastases have not been treated yet. Since the brain surgery, we have had two brain MRIs—one before and one after radiation—which show the brain metastasis has stabilized at a diameter of 5 mm.

Throughout all these years, my father has been receiving treatment at Mayo Clinic. What has absolutely shocked me lately, however, is the inertia and, frankly, the poor approach regarding his ongoing care from his oncologist. Because of the brain involvement, the doctor insists that no chemotherapy can be administered. He suggested that the left side of the pelvis (where there is a visible fracture) could undergo another round of radiation, and that would be the end of it. As for the lungs, he isn't planning any treatment at all. When I heard this, I was left in total shock!

The neurosurgeon did mention that once the "effect" of the cranial radiation wears off—likely in about two months—it might be possible to perform Gamma Knife surgery, following any oncological treatments.

When I asked the oncologist if performing Gamma Knife would be a wise move to eliminate the brain metastasis so that he could then begin systemic chemotherapy with a targeted drug, he simply replied, "Well, you decide for yourselves"??!!

Currently, because of the metastases and the pelvic fracture, my father’s mobility is limited, and he relies on crutches to get around. We are managing his pain with medication. His blood work only indicates anemia.

I am at a loss as to what to do. Should I insist on the Gamma Knife sooner? Should I seek a second opinion? I am pleading for your help and advice—is any form of chemotherapy even possible in his current state, and is radiation for the lungs an option?

Please forgive the length of this post.

Thank you in advance.

Kenneth Wilson6

Listen, placiddrifter19, where exactly did you get the idea that Sutent should have been on the medication list when that first metastasis showed up? 😢
I’m honestly worried the oncologist might be right here. Since we're dealing with brain metastases, none of the standard therapies currently available are actually indicated. That said, I’ve heard whispers through the grapevine that doctors might take a massive risk if the patient specifically demands it. Personally, I’m skeptical about the lung radiation. Gamma Knife scares me, but by the time they go through with it, it might already be too late—if that tumor swells past the 2 cm mark, Gamma Knife won't be able to touch it.
Get a second opinion from a specialist overseas and seriously consider continuing treatment there. There might be some off-label drugs that could actually make a difference. You need to look into it.

Thank you so much for the advice.

I had been holding onto a glimmer of hope that perhaps Avastin might still be an option for him. However, the radiation oncologist informs me that radiotherapy isn't feasible because the metastases are too widely dispersed throughout the lungs. At this stage, my only remaining question is whether a Gamma Knife procedure could be performed in the near future to make chemotherapy a possibility. As for seeking treatment abroad, I honestly haven't had the chance to properly research those avenues yet. Part of me was desperately hoping we wouldn't have to go down that road, and truthfully, I'm at a complete loss as to even where I would begin looking.
I wonder, is there any precedent here in the States for accessing chemotherapy under one's own responsibility and expense, and would any local oncologist actually agree to prescribe it? To be perfectly honest, I knew nothing about "off-label" medications, let alone which specific ones might apply in a case like this....

Thank you,

Best regards,