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

Forgive me if this sounds like a total rookie question, but does radiotherapy involve taking something orally, or is it more about targeting specific areas of the body with some kind of machine designed to zap cancer cells?

There are two ways to handle radiation: external beams and internal sources. With the internal stuff, doctors surgically place the radioactive material right inside the body so they can hit that diseased tissue with pinpoint accuracy. Once the treatment course is done, they just take it out.

Treating someone with radioactive iodine usually means taking small doses orally as an outpatient, though larger doses require a hospital stay because isolation is non-negotiable. Since the patient is essentially emitting radiation themselves, they have to stay in a specialized room for a few days until the iodine is cleared from their system. It’s probably lined with lead or something similar to keep everyone else safe.

Does anyone experience nausea or vomiting? Are there any immediate side effects, and how exactly do they show up?

My dad is in the hospital, and things look really bad. I'm terrified he might not make it through this. It's just... it's so hard to witness, and I end up just breaking down and crying at home. They didn't even want to admit him right away, though they finally did. There was such a long wait, and they actually tried to send him home first. Now, I'm going by myself to see him struggling. I don't have anyone, literally no one, to stand by me through this. I honestly don't know how I'm going to get through this; it's just incredibly heavy. Parents are everything, truly everything.

loneskipper10 said:Is he feeling any nausea or vomiting? Any immediate side effects, and how are they showing up?

From what—the chemo or the radiation?

There are always side effects, but the intensity varies wildly. It’s all pretty individual; some bodies just take the hits better than others. There’s no rulebook.

mistyjackal842 said:Dad is in the hospital in really bad shape. I’m terrified he won’t make it. It’s so hard to watch; I just sit at home crying. They didn't even want to admit him right away—they kept trying to send him home first, but eventually, they let him stay. After waiting forever, they were going to discharge him, but he ended up back in. I go by myself to see Dad while he suffers through this. I don't have anyone to actually be there with me. I don't know how I'm going to get through this; it's just so incredibly hard. Parents are everything.

I am so sorry. Have you thought about talking to a professional? It might help to just verbalize everything you're thinking and feeling. Dad doesn't just need support—you do, too.

Eric Newman75 said:From what, chemo or radiation?

Radiation?

loneskipper10 said:Radiation therapy?

If they aren't irradiating the abdomen, you probably won't deal with much nausea. Fatigue is usually the big one. Skin changes happen too. As the radiation builds up, those side effects tend to ramp up as well.

mistyjackal842 said:My dad is in the hospital in really rough shape right now. I’m terrified he might not make it through this. It’s devastating to witness; I just sit at home and cry. They didn't even want to admit him right away—they kept trying to send him home first, though they finally relented. There was such a long wait, and they were pushing to discharge him initially. Now, I find myself going to the hospital alone just to watch him struggle. I don't have anyone to lean on, truly. I honestly don't know how I'm going to get through this; it's just incredibly heavy. Parents are everything in this world.

Look, you actually have a right to free "psychological" support as a family member. He probably should have reached out to someone right from the start, but sometimes people just hesitate or can't bring themselves to do it. In my case, I finally spoke to someone during the last cycle, and we both felt a bit awkward about it—it wasn't exactly easy to find the right words to say. I practically breezed through it, whereas she found it quite uncomfortable because things didn't go quite as planned when her timing was off.

Thank you everyone for all the advice. My dad has a nasogastric tube, he's struggling to breathe, he's on oxygen, and he's developed pressure sores. Since we live on our own, I guess I'm wondering if he would have the right to be placed in the palliative care unit at Rockefeller's Hospital. I'm currently unemployed and don't work in the medical field, so honestly, I have no idea how I'd manage to pay all the bills if I had to put him in an expensive private facility here in Chicago. From what I've heard from visitors, Rockefeller's is pretty full. Maybe there might be some space for my dad... because before this hospitalization, I was caring for my immobile father all by myself for six years. Now, I just can't do it anymore because his health has declined so much. So, I suppose I'm asking if there's any hope at all that he could be moved from Vinogradski to Rockefeller's. Does anyone happen to have any experience with this?

Dad is moving from the hospital back home to Sesvete. He’ll be staying in a care facility for about a month before we decide on the next steps, I guess. Honestly, dealing with this feeding tube is the hardest part, but I suppose it’s just what needs to happen right now. I can't quite wrap my head around why he can't swallow... maybe it's just old age? He didn't have a stroke or anything like that. If anyone out there has more info regarding feeding tubes, please let me know. The doctor has been so unpleasant—it feels like I'm not even allowed to ask questions. If he could just swallow and eat normally, I would have brought him straight home instead of sending him to these expensive facilities. Does anyone know if there's any kind of home health assistance available to help us learn how to manage the tube?

I was relying on a nasogastric tube to get my nutrition while my mouth was still swollen shut after surgery. I had a tracheostomy tube in my neck to breathe through, too. My surgeon actually stitched up the tracheotomy hole right there in front of me. I was desperate to head home, but since the wound hadn't healed yet, I had to talk him into doing it. Because there was a risk he might puncture an artery with a needle—a gamble I didn't want to force him into—we did everything without any painkillers. A few days prior, once he was sure I’d mastered the swallowing reflex, he pulled the NG tube out through my nose. It wasn't painful, just... uncomfortable. If I couldn't eat, I would have insisted they put it back in.

So, the big question is whether your dad can swallow those things. If he can't, is it because of nerve damage or just because his mouth and throat are too sore? If that swallowing reflex is gone, the tube becomes permanent and unavoidable. Learning how to swallow again is incredibly hard when nerves are damaged. I've seen people practically popping their eyes out from coughing so hard after swallowing just a few drops of saline. I didn't struggle quite that much; I eventually figured out a trick. I used some Octenidol mouthwash to help me down the prescribed test bottle—that liquid was a lifesaver. I tried so hard to visualize the path saliva takes down my tongue, but everything felt totally normal. "Swallowing is just swallowing, no big deal," I thought. So, I decided to take a little sip of the Octenidol. It isn't meant to be swallowed—you're supposed to rinse and spit—but it had mint in it, which gives that warming sensation and then cools you down once you follow it with water. He showed me how to tilt my head and move my tongue to engage whatever part of my throat was still working. Armed with that knowledge, I managed to tackle a third of a spoonful of soup. Just to start. The nurse wasn't sharing my optimism—she set the plate down and immediately backed off about ten feet. But hey, it went fine. Bit by bit, I finished everything, even if it felt like an eternity. 😁

When it comes to syringes and tubes, there's no real secret to it. You have to hold it above the nose level because of the pressure. If you drop the tip of the syringe below that level, the liquid starts backing up and spilling everywhere. Feeding itself isn't painful, it's just painfully slow. The nurses were practically crossing themselves when they saw what I was doing—honestly, I would have mixed everything together into one bowl—soup, mush, juice—stirred it all up, and just fed it into myself. When you lose your sense of taste—and you do, because your mouth isn't really part of the equation—it doesn't matter how you do it. The key is to go slow and finish with some water. You need that for the heartburn and to flush out the tube and syringe. Also, keep in mind that besides my tongue, they basically took my arm, too, so trying to work the syringe was pretty nauseating and painful. If his nerves aren't damaged, your dad can probably feed himself. Offer it to him; let him take care of himself and find that will to live. I took over because I realized the nurses were completely overwhelmed; they just couldn't keep up with feeding everyone. So, I did it myself. Regardless, they were impressed. And, in a way, satisfied. They see a lot of things, but they really appreciate patients who refuse to give up. 🙂

Hello everyone, things are getting progressively worse on our end.
Both his surgeon and oncologist have essentially given up on my dad.
We are now dealing with the fact that he is completely immobile.

Does anyone know if palliative radiation to the cervical spine can cause spinal cord damage, and if so, how reversible is that?
He received 6 Gy, and following that, there was a decline that resulted in a total loss of sensation.
However, considering the tumor's location and his poor reaction to chemo (he underwent a third cycle just four days after the radiation),
we aren't entirely certain about the exact cause.
The doctors aren't providing any clear answers.
A year ago, he also received 6 Gy, and that treatment actually worked by reducing his pain.

Hello to everyone navigating this difficult topic. This whole situation started after some intense back pain I've been dealing with for the last two months—doctors kept insisting it was just shoulder arthritis, but it turned out to be this instead.

If anyone here has gone through something similar—or if you happen to know much about lung cancer—I would be incredibly grateful for any insight you could share. I just want to be as prepared as possible, because, honestly, this doesn't look good. And I'm not even talking about myself.

Thank you all.

https://ibb.co/98K8G3b

hello
I'm looking at your situation and seeing my own future playing out pretty soon. My mom had surgery two days ago at Chicago General—a total laryngectomy. From what I gather, they’re using some kind of tissue graft to replace her tongue, though they haven't really explained where it comes from. They aren't telling us much, and visitors are strictly off-limits. Mom is doing pretty poorly down in New Orleans; we can only call her, and that's about it.
So, if she manages to get her swallowing reflex back, will she be able to eat on her own? My understanding is that her trachea will stay open permanently for breathing, and I'm still a bit fuzzy on how the tube feeding works. Does anyone know what the recovery looks like or how long we'll need hospital support? Honestly, I have no clue where to even start looking for info on what happens once she's discharged, or who is going to teach us how to manage everything. Thanks.

Eric Newman75 said:I was on a nasogastric tube while my mouth was still swollen shut after my surgery. I had a tracheostomy tube in my neck to breathe. The surgeon actually stitched the hole closed right there on me. I wanted to head home, but since it hadn't healed yet, I had to talk him into doing it. There was a risk he might hit an artery with the needle, which was a gamble I didn't want to force on him, so we did the whole thing without any painkillers. He pulled the tube out through my nose a few days later once he was sure my swallowing reflex was back. It wasn't painful, just uncomfortable. If I hadn't been able to swallow, he would've put it right back in.

The real question is whether your dad can swallow. If he can't, is it because the nerves are trashed or just because his mouth and throat are too sore? If that reflex is gone, the tube becomes a permanent fixture. That's incredibly hard to relearn when nerve damage is involved. I've seen people whose eyes practically popped out from coughing violently just after swallowing a few drops of saline. I didn't have it quite that bad, though; I figured out a workaround. I used Octenidol—it's a rinse—to sip from the trial bottle they gave me. That liquid was a lifesaver. I tried to mentally track the path of saliva down my tongue, but everything felt normal. "Swallowing is just swallowing," I thought. No big deal. So, I decided to take a little sip of the Octenidol. It isn't meant for drinking—you're supposed to spit it out after rinsing—but it had mint in it, which burns a bit and then cools everything down when you follow it with water. It actually helped me figure out how to tilt my head and move my tongue to find which part of my throat was still working. Armed with that little bit of intel, I could tackle a third of a spoonful of soup. Just to start. The nurse wasn't exactly sharing my optimism; she dropped the plate in front of me and backed off about ten feet immediately. But hey, it went okay. Bit by bit, I finished it all, even if it felt like an eternity. 😁

As for the syringes and tubes, there’s no secret trick to it. You have to keep the syringe above the nose level because of the pressure. If you drop the tip of the syringe below that line, the fluid is just going to back up and spill everywhere. Feeding itself isn't painful, it's just agonizingly slow. The nurses were practically crossing themselves when they saw my technique—honestly, I would have mixed the soup, the puree, and the juice into one big mess, stirred it up, and just shoveled it in. When you lose your sense of taste—which you do, because your mouth isn't really part of the equation anymore—it doesn't matter how it looks. The key is eating slowly and finishing with water. It helps with heartburn and flushes out the tube and syringe. Keep in mind, they didn't just take my tongue; they basically took my arm too, so maneuvering the syringe was a massive pain. If his nerves are intact, your dad will probably be able to feed himself. Give him the chance; let him take charge of himself and find that will to live. I stepped up because I realized the nurses were totally overwhelmed; they couldn't keep up with everyone's feeding. So, I just did it myself. Whatever, they were impressed. And honestly, a little relieved. They see a lot of things, but they really appreciate patients who don't just give up.🙂

My father passed away today, five months after his diagnosis. There wasn't much suffering; he simply fell asleep..

Karen Cruz said:I honestly have no idea where to even start looking for info once Mom gets discharged. Who’s actually going to help us learn how to manage all this? Thanks

The hospital staff will give you some pointers, but let's be real—you're going to have to do a lot of the legwork yourselves. A local non-profit support group for laryngectomy patients would probably be your best first stop for actual guidance.

Rachel Garcia said:My Dad passed away today. It's been five months since the diagnosis. He didn't suffer much... he just fell asleep..

I am so incredibly sorry for your loss. Hang in there.

Maria Baker41 said:Thanks, everyone! It looks like his genetic testing was completed, but nobody actually told us what the goal was—specifically, if he’s now considered a candidate for any advanced treatments.
I suppose that's something you'd need to ask his oncologist, right?

If the testing is done, you should definitely check in with the oncologist who ordered it to see if the results are officially in!

loneskipper10 said:Is chemotherapy radioactive? Are radioactive substances being put into the body?

No, it isn't. No radioactive substances are being introduced during chemo.
What people often get mixed up with this is things like radioactive iodine therapy. That’s actually categorized as radioisotope therapy, which is a completely different ballpark from standard chemotherapy.

Rachel Garcia said:My dad passed away today. It’s been five months since his diagnosis. He didn't suffer too much; he just drifted off to sleep...

I am so incredibly sorry for your loss.

I’m back on this thread after more than six months.
To get straight to the point: a year ago, my dad (59) was diagnosed with Stage 4 lung cancer.
He went through six rounds of chemo at the Mayo Clinic, followed by some maintenance therapy. Last November, he also underwent palliative radiation on his brain.
After the maintenance treatment wrapped up, the cancer flared back up—so now he’s been sent to Johns Hopkins for immunotherapy, where he’s completed two cycles.
His general condition might not seem all that bad if it weren't for the agonizing pain he's dealing with in one hip and knee.
The pain is triggered by movement, so he spends almost all his time lying down just to avoid the necessity of moving or even turning over.
What can we do?! Where can we find effective analgesics—because Ibuprofen 800 isn't doing a damn thing—or should we be looking at alternative ways to manage the pain?
Please, I need help or advice!
The pain is horrific; neither he nor my mom can sleep at night.
The GP prescribed some patches, but those aren't helping with the hip pain either. As for the specialists, they haven't recommended anything concrete.
This has been going on for over a month and a half now.
Who should my parents reach out to?