Support resources for families dealing with cancer and other serious illnesses

I didn't really have any early warning signs. I just woke up one morning and noticed the left side of my neck was visibly swollen. After that—right up until I got an actual diagnosis—I had some night sweats (honestly, can't tell if it was just stress or the illness itself). Usually, people talk about swollen lymph nodes being the main giveaway, along with those night sweats, unexplained weight loss, and hair thinning. While I was going through treatment, I saw quite a few people in their early 20s, but there were also 50-year-olds and 70-year-olds in the mix. I even read online about kids as young as 4 or 5.

A lot of people I know who have dealt with lymphoma told me one of the very first red flags they noticed was pain in their neck lymph nodes right after drinking alcohol.
A friend of mine got sick when she was about 16. For her, it started out looking like typical symptoms—a sore throat, pain when swallowing—and she ended up going through rounds of antibiotics while her neck nodes were slightly swollen. We went down to Miami for vacation, and that summer she spent all her time swimming in the ocean. My old man used to buy this pure blueberry juice in huge quantities, and we were drinking liters of it; during that month-long stretch, all her symptoms actually vanished. But as soon as autumn rolled around and we headed back home, her neck swelled up aggressively. I vividly remember her having a growth on her neck the size of a hand, and that’s when they finally figured out what was actually going on. On top of that, she tested positive for EBV, which seems to be almost a universal rule for everyone fighting lymphoma.

copperbison4 said:In my case—there weren't really any early warning signs. I simply woke up one morning with noticeable swelling on the left side of my neck. After that—and until the official diagnosis—there was perhaps some mild night sweating (though whether that's psychological or physical, I can't say for certain). Generally, people report swollen lymph nodes as a primary symptom—along with night sweats, unexplained weight loss, and hair loss. During my treatment, I encountered about 4 or 5 very young people—roughly 20 to 25 years old—but there were also 50-year-olds and 70-year-olds. I even read online about children as young as 4 or 5.

My dad had a similar experience—swelling on the left side of his neck. He didn't have any other symptoms then, and he still doesn't have any now. It has been about a month and a half since it started.

copperbison4 said:@ driftingsurfer14

Since your father has a different type, I can't say for sure how things will progress—it's just too variable. You might want to call the number for this non-profit; explain the situation and ask them to mail you some informational booklets regarding the disease, treatment, and diet. They sent me three booklets directly to my house via mail—one was specifically about chemotherapy, another focused on "nutrition for patients with blood cancers," and the third covered Hodgkin and Non-Hodgkin lymphomas by Boris Labar.

Thank you—I will contact them next week.

Is that lump kind of like a bump on the back of the neck? I think I saw something similar by accident while I was waiting with my mom for her check-up at the hematology clinic back in the middle of last year.

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It doesn't have to mean anything. This older guy who was in my hospital room had a super distinct lump on his neck too—more like a tennis ball than some weirdly shaped swelling. He actually had Non-Hodgkin lymphoma, but when I asked if that's what the bump was, he said no. He’s had that thing for years, and apparently, his Non-Hodgkin was in his eye 😕

copperbison4 said:It doesn't necessarily mean that—an older gentleman who shared a hospital room with me had an identical lump on his neck; it was almost perfectly spherical, more like a tennis ball than some irregular swelling. He actually had Non-Hodgkin lymphoma, but when I asked if that was what the lump was, he told me no—he'd had that specific bump for years, whereas his lymphoma was located in his eye. 😕

Goodness 😢😢

driftingsurfer14 said:My dad had the same thing—swelling on the left side of his neck. No other symptoms then, and nothing since. It’s been about a month and a half now...

My dad dealt with night sweats, weakness, weight loss, swollen lymph nodes, and an enlarged spleen. For almost a year, his friend kept insisting it was just stress and Lom, and he actually got sent home from the ER three different times without any follow-up advice. He ended up being diagnosed with late-stage Non-Hodgkin at the end of it all. He lived for eight months after that...

The primary cancer showed up in a groin lymph node. Thirteen years ago, because of a misdiagnosis, he had an X-ray where the technician forgot to use a lead shield. They told him back then that trying for kids wouldn't be wise for a few years. I'm just wondering... what are the odds he was exposed enough during that procedure to cause a disease that started right in the groin area?

crimsongull20 said:My dad dealt with night sweats, weakness, weight loss, swollen lymph nodes, and an enlarged spleen. For nearly a year, his friend kept telling him it was just stress, and he ended up getting sent home from the ER three separate times without anyone giving him any actual follow-up advice. He was eventually diagnosed with late-stage Non-Hodgkin lymphoma and lived for only 8 months after that.

The primary carcinoma was found in a groin lymph node. Thirteen years prior, because of a misdiagnosis, he had an X-ray where the technician forgot to use a lead shield, and they told him it wouldn't be wise to try for kids for a few years. It’s driving me crazy—what are the odds that he was irradiated enough back then to trigger a disease that started right in his groin?

Wait, did you mention before that your dad already had some kind of cancer? Remind me if you wrote that?
By the way, carcinoma isn't the same thing as lymphoma. They come from entirely different cell types. Carcinomas originate in epithelial cells, whereas lymphomas stem from cells within the immune system. In that sense, the differences are massive; they are treated differently, they progress differently, and they have different prognoses. It’s unlikely for a primary carcinoma to show up in a lymph node; usually, that’s just a metastasis from a primary tumor located somewhere else.
Beyond lymphomas and carcinomas, you also have sarcomas which come from connective tissue, leukemias from blood-forming cells, melanomas from melanocytes, and gliomas from brain cells.
So, "cancer" isn't just one thing, even though people here tend to use the word as a catch-all term for everything because it's such a heavy, taboo subject that everyone avoids talking about directly.

Regarding radiation: yes, any part of the body that has been irradiated carries a risk of developing a new malignancy over several years as a consequence of that exposure. That’s why modern radiation equipment is becoming incredibly precise, designed to target only the diseased cells.

Angela Wright said:Wait, didn't you say your dad already had some kind of cancer? Remind me...
By the way, cancer isn't the same thing as lymphoma. They come from completely different cells. Carcinomas start in epithelial cells, while lymphomas originate in the immune system cells. There's a massive difference there—treatment, progression, prognosis, they're all different. It’s unlikely for a primary carcinoma to show up in a lymph node; usually, that's just a metastasis from a tumor somewhere else.
Beyond lymphoma and carcinoma, you've got sarcomas from connective tissue, leukemias from blood cells, melanomas from melanocytes, and gliomas from brain cells.
So, "cancer" isn't just one thing, even if people here use the term too broadly because it's one of those taboo words everyone avoids...

As for radiation, yeah, any part of the body that gets irradiated carries a risk of developing a new issue years down the line as a result. That's why they're working on more precise tech now, aiming only at the diseased cells.

Sorry, I'm pretty clueless when it comes to malignancies. It's been years since my old man passed, and we were living in different cities during his illness. His sickness was actually pretty short, so most of what I knew came from my mom, who wasn't exactly a reliable source... The diagnosis was Non-Hodgkin lymphoma—can't remember the specific type—late stage, and they said it started in an inguinal lymph node. He hadn't dealt with carcinomas before. He only went for that X-ray because of a kidney stone stuck in the ureter. He wasn't wearing a lead shield for that scan, so it wasn't radiation treatment for some other cancer.

Maria Fisher46 said:Moderator Notice

My apologies to our valued member hollowridge88 for the mistaken red card, which will be rescinded as soon as possible.

The card was actually intended for the post above yours, as discussing alternative treatment methods violates our guidelines here; we have a dedicated section specifically for Alternative Treatments instead.

Sorry for any inconvenience caused.

All posts regarding alternative medical methods have been removed.

No worries at all! I also want to apologize for my oversight... I didn't check properly before commenting. It won't happen again!

crimsongull20 said:Look, I’ll be the first to admit I’m pretty clueless when it comes to cancer. It’s been years since my old man passed away, and we were living in different cities during his illness—which, honestly, went by incredibly fast. Most of what I knew came second-hand from my mother, and she wasn't exactly a reliable source of medical facts. He was diagnosed with Non-Hodgkin lymphoma—I can't recall the specific subtype—at an advanced stage, apparently starting in a groin lymph node. He had no prior history of cancer, and the only reason he was getting an X-ray was because of a kidney stone stuck in his ureter. That scan was done without any protective shielding, so there's no question he wasn't being irradiated as part of some other cancer treatment.

Standard X-ray radiation just isn't intense enough to trigger or drive the development of lymphoma.

The folks over at Mayo Clinic just called to let me know Dad has an appointment with the hematologist the day after tomorrow—so things are moving along.
Does anyone have any advice on specific questions we should ask or things we should request to make sure we’re fully prepared for everything ahead?

We just got back from the hospital, and unfortunately, Mom's chemo session had to be postponed because her white blood cell count is quite low at 2.8. She was given a Dexamethasone injection to help boost those levels, along with some Pepto-Bismol for her stomach. We’ll have to wait until Tuesday to see if that does the trick. It looks like she also developed a urinary tract infection, which probably contributed to the low count. On top of everything, she’s been struggling with this terrible dry cough for three weeks now; it keeps her up all night, makes her feel like she can't breathe, and really irritates her throat... is this something typical with her diagnosis? For cough relief, we first tried some tablets prescribed by her primary care physician (I can't recall the exact name), then switched to Codeine, and now we're on Pholcodine. We even tried some over-the-counter syrup to soothe it... but nothing seems to be working effectively. Codeine helped just a tiny bit, but she isn't allowed to take much more since she's limited to one box per month. Does anyone have any advice on how to ease this cough? The strain from coughing so hard is causing her so much pain in her ribs, bones, kidneys, and legs... everywhere! She's just completely exhausted and worn out by it all. Thank you.

hollowridge88 said:Well, we’re finally back from the hospital. They had to push back Mom's chemo session because her white blood cell count dropped too low—it's sitting at 2.8 right now. She was given a Dexamethasone injection to boost her white blood cell count. She’s taking Pepto-Bismol for her stomach now. We'll see how much that actually helps come Tuesday. She also developed a UTI, which probably caused her white blood cell count to drop. My mom has been dealing with this horrific dry cough for three weeks straight; it keeps her up all night, makes her feel like she can't breathe, and just tears her throat apart. Is this even normal given her diagnosis? Regarding cough suppressants, we started with some tablets her primary care doctor prescribed (I can't recall the exact name), then moved to Codeine, and now we're on Pholcodine. We even tried some over-the-counter syrup to soothe it... but nothing is really working. Codeine helped, I guess, but only a tiny bit, and she isn't allowed to take more because she's limited to just one box a month. Does anyone have any advice on how to ease this cough? The strain from coughing so hard is causing her so much physical pain—her back, her ribs, her kidneys, her leg... everything hurts. She is just completely exhausted and worn out by all of this. Thanks.

Look, Dexamethasone isn't used to boost your white blood cell count. It’s an anti-inflammatory, sure, but it also acts as an immunosuppressant. If you're looking to actually raise those leukocyte levels, you'd be talking about Neupogen or a Neulasta injection.
Did you mention that Mom has a UTI, and is she being treated for it? If the culprit is something like E. coli, we’re looking at a potentially dangerous situation given how low her white blood cell count is. Bacteria can easily spread through the system and trigger sepsis. Normally, your white blood cell count would spike to fight off an infection, but since your mom is undergoing chemotherapy, those cells—the very ones responsible for killing off foreign invaders—have been wiped out.
Get her to a doctor right away for some antibiotics if she hasn't started them yet, and you absolutely have to boost her immune system with probiotics. If you want a natural way to get those white blood cell counts up, nothing beats some good old-fashioned bacon and garlic—it’s worked wonders in several cases that looked pretty much hopeless.

So, my mom was actually on Dexamethasone because her white blood cell count was super low, which meant she couldn't really start her chemo treatment just yet, but I guess those injections managed to bump her numbers back up within a day or two 🤷

Linda Ortiz49 said:My mom was given Dexamethasone when her white blood cell count dropped so low she couldn't handle chemo; those injections bumped her numbers up within a day or two.🤷

I haven't heard of that before,🤷 so I did a quick Google search and came up empty.
From what I’ve seen dealing with people going through really aggressive chemo, every single time their white cell counts tanked, they were put on Neupogen.

If anyone happens to have a link or some info on using Dex like that, I’d really appreciate it.

Maybe I’m getting my wires crossed or something, but if I recall correctly, that was the name of those injections—the ones she used to get from her primary care doctor. I don't have my mom's medical records right here in front of me, but I'll definitely double-check them soon.

My Oncologist seemed a bit surprised that the GP was even prescribing them, but honestly, they helped every single time. And when we kept asking all those questions about whether things like bacon or popcorn might help with her symptoms, she just kind of shrugged and told us, "Hey, you can try whatever you want..." So, of course, we tried everything under the sun, but the white blood cell counts just stayed stubbornly a little bit below the normal range.

Linda Ortiz49 said:Maybe I got mixed up, but I think those were the names of those injections; she was getting them from her primary care physician. I don't have my mom's medical records right here, but I'll double-check.

The Oncologist was baffled that the GP was prescribing it, but it worked every single time. When we asked all those questions about whether things like bacon or popcorn might help, she just shrugged and said, "You can try whatever you want..."

I simply cannot wrap my head around why he’d get that specifically for that purpose—presumably to make chemo easier to stomach by dulling some of the side effects. The Oncologist was surprised because Dexamethasone is covered under Medicare, and let's be honest, Medicare is pretty stingy with these things. Usually, a 4ml dose of Dex is strictly for hospital administration, whereas for home use, you're looking at 0.5mg tablets. Normally, she should have received that Dex in the hospital setting. It honestly surprises me the Oncologist didn't lose her cool, considering the GP was essentially making the call without consulting a specialist.
From what I understand, Dex is actually contraindicated during something like a bacterial infection or when white blood cell counts are already bottoming out, since it suppresses the immune system—and we all know the white cell count is already crashing during treatment.

My only logical conclusion is that people are being fed these stories because Neupogen and Neulasta are incredibly expensive.

EDIT: Okay, I found that leukocytosis can be a rare side effect of taking Dex—about 1 in 1,000 to 10,000 cases. But trying to cling to that tiny statistic and hoping it somehow works for an oncology patient whose white cells are plummeting due to chemo is absolute madness, especially when there are medications available that provide almost instant results.