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

I’m not entirely sure I’d call a PET scan "good luck." It’s straight-up heavy radiation being pumped directly into your system. You aren't even supposed to be near pregnant women or kids for at least 24 hours afterward, which says a lot about the intensity of it. I’ve been through it twice myself, and trust me, it isn't some wonderful experience. Both times, the scan showed significant activity over a large area, yet my oncologist eventually decided she wouldn't send me for that much radiation anymore because my markers had stabilized. It’s been four years since then, and there hasn't been a single sign of the tumor. My MRI shows everything is fine. Usually, a PET scan happens later in the process—it's meant to show the success following the therapy. A PET scan reacts to the smallest details; it's incredibly sensitive, and because the radiation levels are so high, I don't see much point in using it right at the beginning. As for Cisplatin? Honestly, the biggest issue there is losing your hair, but hair grows back. The real concern is that platinum can cause long-term peripheral neuropathy. How anyone handles chemo is strictly down to the individual. Some people lose their appetite entirely, some eat a bit less, and others eat just fine. Some don't even need anti-nausea pills, while others rely on them heavily; then you have those who won't eat anything at all because they're trying to avoid the vomiting and diarrhea. If your hemoglobin drops, you'll get a transfusion. You might feel like insisting you don't need one, but it's really not in your best interest to delay chemotherapy while waiting for your blood counts to improve. They'll also give you an injection to boost your white blood cell count. Ultimately, you'll just have to see for yourself. Every one of us reacts to this stuff differently.

hello,
I have an excess of supplies on hand—ileostomy bags, discs, and other consumables, along with nephrostomy bags and Prosure. If anyone could use them, feel free to shoot me a private message; I'm happy to give them away.
I also have a few unopened bottles of Mykosan mushrooms (three 500ml bottles of Agarikon Plus, expiring 5/2021, and eight 500ml bottles of Lentifom, expiring 2/14/2021) that I’d be willing to sell at a negotiated price. It’s probably best suited for someone already using them or who knows exactly what dosage they need given their diagnosis.

Hello everyone. I was wondering if anyone here has been dissatisfied with their treatment and actually managed to successfully switch oncologists.

My father has been receiving treatment at Johns Hopkins Hospital for three years now.
The oncologist seems completely disinterested. During regular check-ups, he ignores my father's reports about neuropathy and the increasing pain at the primary carcinoma site. He just recites the MRI findings regarding a new tumor without offering any actual reaction or commentary to the patient—just a dismissive remark that since the surgeon requested the MRI rather than him, it’s apparently not his concern. On top of that, he’s decided to extend the chemo despite being informed about the initial neuropathy.
The last check on the metastatic tumor was over eight months ago.
We are honestly at a loss for what to do next.

Hello everyone, I really hope those of you dealing with illness are starting to feel a bit better. 🙂>

I’ve got a CT scan scheduled this Tuesday for my oral cavity and neck. Honestly? I’m not sweating the scan itself—I have a gut feeling the results will be fine. Once they come back, the next step is a physical exam with the ENT specialists. What actually gives me peace of mind is that the crew over at the Cancer Clinic mentioned that most tumors are caught through manual palpation, so I actually find it reassuring when they do a hands-on check.

I spent the whole week down a rabbit hole of online research, and let me tell you, the next week isn't looking any brighter. One thing I've noticed while out and about, just living life, is that things are finally getting back to "normal." The streets are packed with cars again, and waiting rooms are absolutely slammed. Sure, they're still checking temperatures and screening people at the entrances, which feels a little strange for hospitals and local clinics—especially since I make sure to stay far away from the infectious disease wards. Still, the doctors here are efficient; I rarely end up stuck there for more than an hour or ninety minutes. The only problem is that by the time I get home, I'm completely wiped out. It just drains me. My blood and urine tests are also suggesting I need to pay a lot more attention to my liver and kidney health. And my stamina? Not great. I'm just ready for this pandemic to settle down so I can actually focus on all the work I have piled up. 😁>

Morgan Kern61 said:Hello everyone, I was wondering if anyone else here has felt dissatisfied with their treatment and actually managed to successfully switch oncologists.

My father has been undergoing treatment at Johns Hopkins Hospital for three years now.
The oncologist seems completely checked out; during regular check-ups, he just brushes off any mention of neuropathy or the increasing pain at the primary carcinoma site. He’ll go over the MRI findings showing a new tumor without offering any actual reaction or commentary to my father—just a dismissive remark that since the surgeon requested the scan and not him, it’s apparently not his concern... then he decides to push ahead with more chemo despite being told about the initial neuropathy.
The last check on the metastatic tumor was over eight months ago.
We are honestly at our wits' end and don't know what move to make next.

Look, neuropathy is a direct consequence of chemo. When you are in the middle of a fight to save or extend a life, neuropathy always takes a backseat because there isn't really a cure for it. You can try pills to manage it, but most of the time they don't even work, or you're just waiting for it to recede years after the chemo stops. By the time neuropathy shows up, the damage is essentially done; switching doctors wouldn't change that reality. The nerve damage has occurred, and nerves take an incredibly long time to regenerate. Stopping or changing the chemo regimen wouldn't provide immediate relief for the neuropathy, though it might technically slow down the overall progression toward the end. As for that eight-month gap in checking the metastatic tumor—that is quite a long stretch, but if your father is older, metabolism slows down, which can sometimes mean tumors progress more slowly too. You didn't specify which type of tumor we are dealing with, but in my humble opinion, you likely wouldn't achieve anything meaningful by simply swapping oncologists.

Eric Newman75 said:... I'm heading in this Tuesday for a CT scan of my nasal cavity and neck. Honestly, I'm not worried about that part; I have a good feeling the results will be fine. Once they come back, I need to see the ENT specialists for a physical exam. What really puts my mind at ease is that the team over at the Cancer Clinic mentioned that most things are caught during these hands-on exams, so I actually find comfort in them checking everything by hand....

I really hope all your tests went smoothly. 👍
It brings back a memory from maybe ten or more years ago. I was at an appointment with my doctor—I think it was just for a cold or something minor like that—when she reached out and felt an enlarged lymph node on my neck. She asked how long it had been there, and I told her I had no clue, I hadn't even noticed it myself. She told me it probably wasn't anything serious, but she wanted to write me a referral just to be sure. So, I agreed, asking what the next step would be, and she mentioned they'd likely do a small biopsy.

Well... I have to admit, I started getting pretty anxious. I got home and started to Google it, and man, the internet is a scary place. 😲 It basically confirmed what I was already dreading deep down—there were really only two ways this could go:
-1. It’s nothing at all, just a completely insignificant swelling of the lymph node.
-2. It's a malignant process.
As I kept searching, I stumbled upon some statistical data suggesting that people with malignant lymph nodes in their neck live, on average, only about 11 months longer. 😵

So, I decided right then and there that I wasn't going to do the biopsy (which I definitely don't recommend for anyone else on here). If it was nothing, I was just wasting my time; if I was seriously ill, wouldn't it be better to spend as much of those remaining 11 months as possible living healthy and blissfully unaware?
To soothe my conscience, I thought of that famous saying by Bob Rock: "Better to live 100 years as a rich man than 7 days as a pauper."

About a month later, my doctor called my cell phone—she's usually incredibly caring and easy to talk to—and once I explained my reasoning, we both just ended up laughing about it together. 😁

Raymond Smith53 said:Neuropathy is just one of those side effects from chemo. When the priority is saving or extending a life, neuropathy usually takes a backseat, especially since there isn't really a cure for it. Or...
. You didn't even mention which type of tumor we're talking about. In my humble opinion, changing oncologists probably wouldn't achieve much here.

I suppose I understand that point, but it doesn't seem like the chemo is doing much, given that neither the primary tumor nor the metastasis shows any sign of shrinking.

It's a bone tumor that wasn't fully removed.
And it's not actually being treated, other than some palliative radiation when the pain gets worse. I probably shouldn't go into all the specifics of the disease progression publicly, as this case is quite unique.
From a layman's logical perspective, the management has been flawed from the start (even the surgeon seems to think so).
I am also wondering, if anyone has experience with this—who is actually responsible for monitoring the primary tumor to see if it's growing or stagnating? Is it the oncologist or the surgeon who performed the resection?

brightviper29 said:I hope everything went smoothly with the scans 👍

Thank you, but I honestly don't know anything yet. They actually transferred me from the Cancer Clinic over to Vinogradski because of some technical issues. I’ll be there on Tuesday, and then I should head back to my usual clinic. Luckily, they pushed the ultrasound back by a week, otherwise, the wait would've been way longer.

hello everyone. I’ve been reading through your posts and following along. My heart truly goes out to those who have lost their loved ones in this fight. I’m not sure if anyone here has dealt with something similar, but any advice or insight would mean so much to us right now. My grandmother is 80. Three years ago, she was diagnosed with breast cancer, which was removed. She only went through radiation because she wouldn't have been able to handle chemo. Over the last month, she’s started having severe pain in her lower body—to the point where she can't walk or even move easily. We've spent the past month driving her to endless checkups and exams, but no one seems to know what's causing the pain. It’s been incredibly frustrating for both her and us, especially since they wouldn't admit her to the hospital initially. We actually went down to the ward and refused to leave until they finally agreed to hospitalize her. Once she was in, a CT scan unfortunately confirmed that there are metastases in her pelvic bone. The doctor told us to prepare ourselves and start thinking about what comes next, whether that means being at home or in some kind of care facility. The thought of putting her in a nursing home breaks my heart; I don't want her to suffer alone there. I know you can't give certainties because every case is different, but I was wondering about your experiences and general outlooks. How long can someone typically endure this? It feels like in just one month, she has gone from being quite healthy to being essentially disabled and unable to stand. Any advice at all would be greatly appreciated.

Chloe Rivera59 said:...

My dad actually discovered he had cancer because of some intense spinal pain. Once we finally got a diagnosis, it turned out the primary cancer was in his lungs, and it had practically metastasized everywhere—including his spine.
Given that your grandmother isn't in a position to undergo chemo, please don't assume that means her pain has to go unmanaged. I can't recall the exact brand names off the top of my head, but my dad used transdermal patches along with both slow-release and fast-acting fentanyl-based painkillers. Honestly, he was virtually pain-free right up until his very last day.
Just a word of caution: you have to be incredibly careful when using those patches, especially if there are small children in the house; definitely read the instructions thoroughly. You’ll need to consult her doctor, as these medications are strictly prescription-only. The regulations are incredibly tight—I remember having to show my ID at the pharmacy every single time and provide full details on who I was and why I needed them (since, naturally, my dad couldn't pick them up himself).
I hope this offers at least a little bit of guidance.

Robin Diaz4 said:My dad didn't even realize he had cancer until the spinal pain started. Once we got the diagnosis, it turned out the primary cancer was in his lungs, and it had basically spread everywhere, including his spine.
Since your grandmother isn't able to undergo chemo, that doesn't mean you can't manage her pain. I can't recall the exact names right now, but my dad used transdermal patches, along with both fast-acting and long-acting pain pills; they were all fentanyl-based. Honestly, he was practically pain-free until his very last day.
You have to be really careful when using those patches, especially if there are small children in the house; definitely make sure to read the instructions. You should ask her doctor about it, as those medications are strictly prescription-only and the regulations for getting them are very tight. I had to show my ID at the pharmacy every single time and provide my details to explain why I was picking them up (since my dad obviously couldn't go himself).
I hope this helps at least a little bit.

Thank you so much for responding. The doctor told us it's exactly as it seems, and unfortunately, that Grandma doesn't have much time left, so we need to prepare for the worst possible pain.
That’s why I’m asking what the best way to handle everything is. There is no cure. Sadly. The end is coming; we just don't know when. It breaks my heart to see her struggling day after day. We have the option to send her to physical therapy for three weeks, but I don't think we can leave her there, especially since visitors aren't allowed right now. I don't want her suffering there alone. Maybe being at home with us will be easier. I believe it will still be painful, but... well. I just hope she won't suffer for too long. It has spread to the pelvic bones and is moving toward the spine. The doctor said it's spreading very quickly.

For pain management, they use Durogesic, which is prescription-only. I believe you need to present both your own ID and the patient's ID when picking it up, at least according to how things work here in the States.
There are several different strengths available, and they are typically changed every three days.

I did some digging, and those patches my dad was using are actually called Matrifen.
The bottom line is this: look into every possible pain management option out there. There’s absolutely no reason for someone to be suffering through unnecessary pain when they're already dealing with everything else life is throwing at them.

Both medications are available here in the States—both Durogesic and Matrifen. You can get fentanyl doses at 12, 25, 50, 75, and 100 micrograms per hour. But listen, these patches aren't for anyone who’s just starting out with opioids; they’re dangerous. Even that tiny 12 microgram dose could be way too much for a beginner. It might honestly be smarter to start with oral tablets instead.

Generally speaking, the transdermal route isn't recommended for patients who haven't been on opioids before. It makes more sense to look at other delivery methods first, like oral or IV. To prevent an overdose, it's suggested that opioid-naive patients start with small doses of immediate-release opioids (think morphine, hydromorphone, oxycodone, tramadol, or codeine). You basically have to titrate those until you hit an analgesic dose that matches the DUROGESIC patch at a release rate of 12 µg/h or 25 µg/h. Once that's settled, then the patient can switch over to DUROGESIC.

https://mediately.co/en/drugs/OvzCgX...rmalni-flaster

Thank you, everyone. But I don't think there will be a need. It was mentioned today that she won't be going home tomorrow after all. Her condition worsened twice today. At this point, I guess it's just a matter of whether she makes it through the weekend or not. We saw Grandma today. She's sleeping. She opened her eyes briefly, but she isn't responsive to anyone. She isn't conscious. Her breathing is shallow. I think the end is near. Maybe she only has a day or two left. Thank God that, at the very least, she won't be in pain. That's really all I can hope for. I just hope she falls asleep and goes to join her grandfather. Thank you all.

hello,

Does any kind of organization out there help cover the costs for people fighting leukemia?

hello
I'm looking for some solid oncologist recommendations in Chicago—really need a second opinion!
It's lung cancer.

Karen Cruz52 said:Hello,

Is there any association out there that helps cover the costs for leukemia patients?

No organization just hands out cash directly—that's not how it works. However, you can work through the Lymphoma Association to organize a fundraiser or a charity drive specifically to raise money for treatment.

Sent from my Samsung A520F using Reddit

Rebecca Doyle6 said:hello
Please, I am begging for an oncologist recommendation in Chicago for a second opinion!
Lung cancer.

If I can be completely honest with you... if you have even the slightest bit of means at all, you should really look for a second—or even a first—opinion outside of the US.

Speaking from my own painful experience, here (specifically in places like Chicago or New York City), there just doesn't seem to be a specialist in this field who actually provides successful treatment. It honestly feels as though they have some sort of shady arrangement with funeral homes. 🙄

Or perhaps we were just unlucky enough to run into a string of "those kinds" of doctors one after another. 😢

Hello, does anyone here have experience with melanoma therapies, specifically Zelboraf and Cotellic? I'm open to information on other options as well, even though these two were just approved. Thank you!