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

Amanda Miller69 said:I’ve narrowed it down to two options: Dr. Janevski over in Jordan or Dr. Suarez at Vineyard. Both are supposedly top-tier surgeons. Does anyone have any intel on them?
The biggest headache right now is my stubborn, bullheaded in-laws. They're digging their heels in. At the Jordan facility, they could actually operate as early as next week—the doctor mentioned this should have been an emergency right after his gastroscopy, but the local hospital in Springfield is a total joke when it comes to wait times. For the Vineyard option, I can only try to talk them into it.
I keep trying to explain that we need to go where the earliest appointment is, but now they’re obsessing over Vineyard just because they think the Jordan place is "only a lung hospital"... it’s infuriating. You try to do the right thing and you just hit a brick wall.

If he doesn't get surgery immediately, he could end up stuck in that "lung-only hospital" indefinitely because of those lung metastases. 😢
Ugh, 🙂
Honestly, the best move might be to just give it to him straight: "Dad, you don't even have a week to waste. If those metastases spread, by this time next year you'll be staring at the ceiling in a hospice ward. These doctors are the best in the business and they handle this every single day."
If you hit another wall, let me know. I might have a few other angles we can use to convince him. 😉

Angela Wright said:If he doesn't go through with the surgery right away, he might end up stuck in some specialized pulmonary ward because those lung metastases won't wait. 😢
Good grief, 🙂
I honestly think the best approach is to just give it to him straight: "Dad, you don't even have a week to waste. If this spreads, by this time next year, you’ll be dealing with much heavier consequences at Saint Peter." Tell him the doctors there are top-tier and handle these exact cases every single day.
If you hit a wall, let me know; I have a few more angles we could try to help convince him. 😉

Thanks, 🙂
I was re-reading his medical reports today and noticed he was prescribed Ensure. I asked if he was actually taking it, and the answer was a resounding no. So, I called my sister-in-law and had her practically force him to take those reports down to the pharmacy. She told the pharmacist to grab it under his insurance and hinted that his doctor clearly failed to explain the prescription or even mention it properly. 😵
My sister-in-law is still in Sweden and won't be back until next week, but she already gave them a call to tell them they need to start listening to me—apparently, I'm the supreme authority in the house now (which isn't surprising, given they've spent years praising me as the world's best daughter-in-law 😁).

What exactly do those purple-to-dark blue blotches mean—the ones appearing on the upper arms and down toward the feet of a patient who's already in the terminal stage?

fadedcrane92 said:What do purple-blue blotches on the upper arms and down toward the feet mean for a patient who is in the terminal stage?

Unfortunately, it’s not a good sign. 😢

When those marks started showing up on my mom's legs, she passed away within about two hours...

Unfortunately, I have to back up what Sarah Chase7 is saying here... we're usually talking about a window of just a few hours, maybe even a single day. It’s like a slow shutdown; the heart and lungs start to fail, and then the organs just begin to give out one by one. 😢

So, how’s everyone doing? brisklynx51, Gary Thomas13, Zachary Howard2, little wine lover, Sarajevo-Alma, school... how are my favorite people holding up?

@Gary Thomas13/">@@Gary Thomas13 🙂 Man, your last post really hit me hard. Your dad is lucky he had a son like you by his side!

Over here, the main issue right now is the pain. After one round of Zantac, Dad’s kidneys were in such bad shape for over a month that he couldn't even stick to his treatment. That's when the pain started, and they prescribed him Tramal. Before that, he was taking Advil, which actually helped, but he had to stop because of his kidneys.

And let me tell you, Tramal was a total nightmare. Not only did the pain never fully go away, but it completely wrecked him. He started getting disoriented, lost control of his right hand, couldn't walk, and turned aggressive. He didn't get out of bed for three days. Once his kidney levels finally stabilized, we went back to the Advil. Within a day, Dad was back to himself. He’s stronger, eating better, walking a lot better, regained control of his hand, and stopped acting confused. But the problem is, the Advil (600mg granules) that used to keep him pain-free for 10 or 12 hours at a time just isn't cutting it anymore.

In the meantime, they put him on a Durogesic patch. Started at 25, then moved to 50. It works about as well as a Band-Aid. Zero points.

We've also tried "regular" painkillers like Tylenol, Analgin, Kafetin... everything provides a tiny bit of relief, but he's still hurting.

Does anyone have any ideas, since the doctors are clueless? Maybe try Voltaren?

We're heading to see the oncologist today for a checkup, so we'll see what she says. We're just hoping Dad can get back on some kind of therapy soon if things keep going this way.

Just taking it one day at a time....

Just taking it one day at a time... hang in there everyone

Amanda Anderson87 said:So, how is everything going on your end? And how are you doing, Zachary Howard2, Michelle Kelly4, Lawrence Turner43, and school folks... how are my favorites?

I was out with my father-in-law in Springfield today. He’s scheduled to be admitted to the hospital for surgery on June 23rd. Honestly, having it handled now is much better than waiting until July 4th at Oakland General.
Even though both doctors gave us the exact same assessment—that while the procedure is doable, we really need to get it over with as soon as possible—it's still a relief.
Now, we just have to wait for the surgery and then see what the results show.

Zachary Howard2, everything's gonna be just fine. They'll bounce back and be back on their feet in no time...

....thanks.

Zachary Howard2, it all worked out perfectly in the end. Everything is going to be just fine.

Just wanted to jump in here and share our experience.🙂
My mother-in-law—I just call her Mom—is wrapping up her third week of radiation, and honestly, so far, she’s doing okay. She dealt with some nasty vomiting on the first day, but they put her on three pills morning and night to handle the stomach issues, and now she’s down to just taking them in the morning. She’s also on 140mg of Temodal every morning. I’ll be honest, I’m almost afraid to count how many sessions of radiation and chemo she actually has left. She’s scheduled for 42 radiation treatments in total.
While she’s staying at the hospital, she’s mostly sticking to honey with ginger, royal jelly, and plenty of fresh fruits and veggies. We haven't introduced any artificial immune boosters or supplements; from what I’ve read, those can actually be pretty counterproductive during this kind of treatment. This weekend, we’re taking her out of the city to the mountains to visit her grandfather. She says being up there helps her relax and, in her own words, "mentally renews" her. My father-in-law does his best to keep her mind off the negative stuff. At the oncology ward, the care is "fine," and she has "fine" roommates, though being surrounded by other patients with those "terrible" illnesses definitely changes her perspective on her own situation. She mentioned that the waiting room for radiology is absolutely packed every single morning with people waiting for their turns.😢😢
I’ve really taken to heart the advice about living one day at a time and just thanking God for every single day we are given.
I just really hope this current stability lasts, at least for the duration of her treatment. She’s constantly anxious, which is completely understandable, and she’s always overthinking everything—if she feels even a tiny bit of pain or a sudden twinge, her mind immediately jumps to the fear that the tumor has come back.😢

Amanda Anderson87 said:so, how are things going on your end? and, well, Zachary Howard2, Michelle Kelly4, Lawrence Turner43, how are your favorites doing?

@juka 🙂 your last post really touched me. I'm sure your dad is so proud to have had a son like you by his side!

The main issue for us right now is the pain. After one cycle of Xeloda, Dad’s kidneys were in really bad shape for over a month, so he couldn't continue the treatment. That’s when the pain started, and he was prescribed Tramal. Up until then, he was taking Advil, which helped, but he had to stop because of his kidney issues.

Tramal turned out to be an absolute nightmare. Not only did the pain never fully subside, but it completely wrecked him. He started getting disoriented, lost control of his right hand, couldn't walk, and became aggressive. He didn't get out of bed for three days. Once his kidney levels stabilized, we went back to the Advil. Within a day, Dad seemed almost back to himself. He’s stronger, eating better, walking much better, regained control of his hand, and stopped feeling so lost. However, the Advil (600mg granules) that used to keep him pain-free for 10-12 hours just doesn't work nearly as well anymore.

In the meantime, he was put on a Durogesic patch—started at 25, then moved to 50. It works about as well as a Band-Aid for him. Zero effect.

We’ve also tried the "standard" painkillers like Tylenol, Analgin, Kafetin... they take the edge off a little bit, but he’s still hurting.

Does anyone have any ideas, since the doctors seem stumped? Maybe try Voltaren?

We’re heading to see the oncologist for a check-up today, so we’ll see what she thinks. We’re just hoping Dad might be able to resume some form of therapy soon if things keep improving like this.

Just taking it one day at a time....

Some friends of ours were buying this specific pain medication intended for terminal patients; I don't recall the exact name. I think it costs around 106 miles for a pack of 10 patches. They kept buying them until a relative mentioned you could actually get them for free through a palliative care center if you had the right order/diagnosis and a signature from your oncologist. Boston is such a strange city; everyone knows everything, yet nobody will tell you anything. 🙂
Those doctors and oncologists strike me as odd; it feels like they'd rather line the pockets of certain pharmacies—since those patches can only be bought at one specific place in town—rather than just referring people to the right associations or institutions.
The man had surgery for a tumor (I'm not exactly sure what kind) and now has metastases in his bones, liver, and wherever else. He's suffering terribly, but the hospital won't admit him because they feel they've done their part, so they basically just sent him home to die.

Elizabeth Fisher13 said:...The man had surgery for a tumor (I’m not sure exactly what kind) and now he’s dealing with metastases in his bones, liver, and wherever else, suffering through unbearable pain. They won't even admit him back to the hospital because they feel they've already done their part—they basically just sent him home to die.

That’s the grim reality of it. My own mother was sent home to die too, at a stage where she was terminal, immobile, incontinent, and barely lucid. Since I wasn't in a position to provide that level of care myself, I placed her in a hospice facility where she passed away after a week. At least there, she was cared for, kept clean, and given pain management—though, truthfully, I spent months afterward beating myself up with guilt over the decision.

Amanda Miller69 said:That’s just how it goes, I guess. My mother was sent home to die too—terminal, immobile, incontinent, and barely lucid. Since there was no way I could manage her care on my own, I placed her in a hospice facility. She passed away there after a week, but at least she was looked after; she was clean, comfortable, and kept on pain medication. Even so, I felt absolutely terrible about it—the kind of guilt that eats at you for months afterward.

I suppose they’re just a necessary evil, unfortunately.🙂
Doctors. We can’t survive without them, yet when we're actually under their care, I guess we just end up feeling completely lost.
Back when I was working at KPMG, we used to hear the same thing almost every single night. We’d be shuttling her back and forth between the ER and the main hospital, and they’d just give us this same old line: "Look, now that she's actually dying on us, we can't find a single bed in any clinic. Why don't you just find a placement somewhere else? You've been driving her back and forth like this for months anyway—just keep the cycle going: home, ER, hospital."
When did we finally wrap things up at the neuropsychiatrist? She actually became completely lucid for a moment—she handed over a dementia diagnosis and recommended an immediate brain MRI.
From September 2013 through January 2014, they were basically just discharging us from the hospital and sending us home. Then, in January, they’d put in the order for August... and now it's only June, and we're still waiting to get an MRI done. I guess that's just how it works.
Thanks to "Stella," we finally wrapped up the imaging, and I should have the results in my hands within two days. As for the rest of the situation, well, I think everyone already knows how that goes. So many people have already navigated this, and plenty more are just beginning to deal with it.
It’s honestly terrifying to even think about how many people have passed away simply because there wasn't an available bed in the hospital, or because someone just brushed it off. You know the type—people who tell you, "Oh, it's nothing, just take some Advil and your headache will go away," or "It’s probably just your blood pressure, don't worry about it." It’s infuriating how easily serious symptoms are dismissed as nothing at all.🙂
Glioblastoma is just one of those things where, even if we had found out back in September, the diagnosis would have ended up being exactly the same. I guess it doesn't matter. For many people—and honestly, for plenty of others too—there aren't even enough signs to warrant an early discovery, let alone a single day's difference.

Amanda Anderson87 said:so, how's everyone doing? iiiii, kco, Zachary Howard2, little birdy, Lawrence Turner43, school stuff... how are all your favorites?
...

over here, the main issue right now is the pain. ....

inra, unlike you guys—we aren't dealing with much pain, at least :/
dad is getting calmer by the day... we got one of those anti-decubitus mattresses, so we just pet him and watch him 24/7, and that's basically it.
he's been on a nasogastric tube since last Friday—it was pretty scary at first, I guess, but you get used to anything eventually.
still, there are these "awake" moments. and then I'm his best 😬. I ask, "did they let you smoke?" he waves no, so we end up smoking together. well, he can't do anything on his own anymore, so I just hold the cigarette to his mouth, he takes a drag, makes this sweet little sound, and smiles. so there you go—at the end of the day, we're finding joy in cigarettes, which are probably the reason this whole mess started (though, who knows, even non-smokers get hit). I guess it's just our way of coping...

I’m reaching out because I could really use some guidance here... my grandmother has developed a growth about the size of a woman's hand right over her sternum. The doctors are currently suspecting a primary tumor—potentially lung cancer. I would truly appreciate any insights you might have... despite all the tests they've run, including biopsies and the removal of an enlarged node, we are still stuck in limbo waiting for the final results. Our next appointment isn't until July 21st... if anyone has any advice or recommendations on how to navigate this, please, let me know.

Could someone please share their perspective on this: does having enlarged lymph nodes near the left side of the sternum following a needle biopsy typically point toward malignancy? Her doctor is leaning towards lung cancer, even though her X-ray came back completely clear...

I honestly don't get what you mean by "left rib bone"... because if I look over at your other thread, you're mentioning a diagnosis of "metastatic cancer of the neck and chest." This means the primary source could be practically anywhere—we're talking from the ear, through the salivary glands, nose, face, larynx, pharynx, tongue, thyroid, lungs, stomach, breast, or even the bones themselves, and honestly, it could stem from just about any organ depending on the circumstances. And as for the type? It could be melanoma, lymphoma, carcinoma, or sarcoma... so, to answer your question, NOBODY can give you a straight answer based solely on the data you've provided here. You really need to go over the full medical documentation and figure out what additional testing is required to pinpoint the origin. The best move is to take everything to a decent oncologist—and let’s be clear, I am definitely not one—so they can weigh in with a professional opinion. But if you're asking me for my personal take on the prognosis? It's grim... A mass the size of a fist is never a good sign, regardless of where it started or what kind of cancer it actually is...

Robin Johnson26 said:I’m asking for some help here... my grandmother has a growth about the size of a woman's hand right over her sternum. The doctors are suspecting a primary tumor, possibly lung cancer. I’d really appreciate any thoughts... we’ve gone through all the tests, biopsies, and they even removed an enlarged node, but we’re still stuck waiting for results. Her next appointment isn't until July 21st... if anyone has advice or recommendations, please let me know....

Until you have the pathology report in hand, there is absolutely nothing anyone can advise or recommend. It’s just speculation at this point. My only suggestion is this: if you don't have those pathology results within ten days, demand the tissue samples and biopsy slides on a formal release. Take them elsewhere for a second opinion—send them to New York City if the testing wasn't done there, or if it's required, send them out of state. You need a fresh set of eyes.

Kevin Garcia12 said:I don't quite get what you mean by "left rib." On another thread, I saw you mention a diagnosis of "metastatic cancer of the neck and chest," which means the primary site could be anywhere—from the ear, parotid glands, nose, face, larynx, pharynx, tongue, thyroid, lungs, stomach, breast, or even the bones themselves, plus dozens of other organs depending on the situation. As for the type, it could be melanoma, lymphoma, carcinoma, or sarcoma. So, to answer your question: NOBODY can give you a definitive answer based solely on this data. You need to look at the full documentation and figure out what else needs to be done to pinpoint the origin. It’s best to show all of this to a decent oncologist (which I am not) so they can give their opinion. But if you want my personal take on the prognosis? It's grim... A mass the size of a fist is never a good sign, regardless of where it started or what kind of tumor it is.

I agree with everything said here except for that last sentence... the physical size of a metastasis doesn't tell you anything concrete about whether the outlook is good or bad. Without specific pathology results, it is impossible to determine the exact tumor type, its grade, or the stage of the disease. There are tiny tumors that can kill a person within a month, and then there are massive tumors where people have more favorable prognoses and can undergo successful treatment until the very end... it all hinges on exactly what we are dealing with.

I have a hunch it's a sarcoma, especially given how vague the descriptions are. Sarcomas are rare, and pathologists often struggle to identify them because some types might not even cross their desks once in an entire career. Like I mentioned on another thread, if the diagnosis remains this non-specific, you need to seek a second opinion immediately—specifically, getting the pathology re-analyzed at a different center.