Living with Lymphoma

So, I got my throat swab back and it’s negative—no bacteria or anything. I’ve got a follow-up appointment this coming Monday, and I’m probably going to be pretty blunt and suggest they just go ahead and do the biopsy.

Jamie Edwards32 said:So, I got my throat swab back and it’s negative—no bacteria or anything. I’ve got a follow-up appointment this coming Monday, and I’m probably going to be pretty blunt and suggest they just go ahead and do the biopsy.

Get another swab and run an ASO titer test. It’s entirely possible for a swab to come up negative even if your ASO levels are positive. Sometimes the doctor just misses the specific spot where the strep is actually lurking with that little swab. You didn't answer me earlier—do you still have your tonsils, or did you have them removed?

I’ve had two biopsies done already—and yeah, I still have my tonsils.

Jamie Edwards32 said:I’ve had two biopsies done already—and yeah, I still have my tonsils.

Once you've dealt with severe inflammation, your tonsils end up riddled with crypts—basically little pits where those old pus plugs used to sit. These holes act like magnets for food particles, turning them into a perfect breeding ground for bacteria. You can have a deep-seated bacterial infection hiding inside those crypts that a standard surface swab will completely miss. Bottom line: get a full blood panel to check for strep and demand a referral to an ENT specialist immediately.
My take? Your tonsils have likely lost their ability to function and have basically become a permanent bacterial reservoir. You're dealing with a low-grade, constant inflammation that's keeping your lymph nodes swollen. Those tonsils need to come out; having a continuous bacterial presence in your system is a recipe for much more serious health issues down the road.
In my opinion, we aren't looking at lymphoma here; we're looking at a doctor who is being lazy and sloppy with your care.

Maybe you’ve got a point about that infection coming from my tonsils—that might be why my throat stays all red and irritated. I guess I'll take your advice and go get an ASO test done, then we'll just see what the doctor has to say about it. Honestly, if the ASO comes back negative, I'm probably going to push for a biopsy just to be safe.

So, I just got my bloodwork back and everything looks fine—mostly. My lymph nodes are a little swollen. Specifically, there’s one in the lateral chain about 19x4mm, and then another one in the right jugular chain measuring roughly 22x6mm. On the left side, they aren't really anything to worry about, just sitting at about 11x3mm. I also went ahead and did the toxoplasmosis serology, which came back negative, and my chest X-ray was clear. Even my dental X-rays looked good too. The only "good" news, I guess, is that I saw an ENT specialist. He told me my tonsils have some pus buildup—basically chronic tonsillitis—and said I probably need them pulled. He didn't say it was an emergency or anything, but he mentioned that when you have tonsillitis, the lymph nodes above the Adam's apple tend to swell up. That makes me wonder, though... do they always stay in that specific spot, or can they show up in the middle of the neck? Because I've got another one sitting right behind my neck, too. The radiologist did tell me that according to the ultrasound, the nodes still have their normal shape, they're distinct, and they actually move around when you touch them.

So, I went ahead and got the bloodwork done for Epstein-Barr too—that came back negative—and then there was the cytomegalovirus, where they just found some elevated antibodies.

Jamie Edwards32 said:So, I just got my bloodwork back and everything looks fine—mostly. My lymph nodes are a little swollen. Specifically, there’s one in the lateral chain about 19x4mm, and then another one in the right jugular chain measuring roughly 22x6mm. On the left side, they aren't really anything to worry about, just sitting at about 11x3mm. I also went ahead and did the toxoplasmosis serology, which came back negative, and my chest X-ray was clear. Even my dental X-rays looked good too. The only "good" news, I guess, is that I saw an ENT specialist. He told me my tonsils have some pus buildup—basically chronic tonsillitis—and said I probably need them pulled. He didn't say it was an emergency or anything, but he mentioned that when you have tonsillitis, the lymph nodes above the Adam's apple tend to swell up. That makes me wonder, though... do they always stay in that specific spot, or can they show up in the middle of the neck? Because I've got another one sitting right behind my neck, too. The radiologist did tell me that according to the ultrasound, the nodes still have their normal shape, they're distinct, and they actually move around when you touch them.

Look, buddy, just get those tonsils out and you'll be fine. Your tonsils are basically just lymph nodes themselves, and yours are clearly struggling. The rest of your nodes are reacting because your body is dealing with an active inflammatory process; they're working overtime trying to pump out antibodies to kill off the bacteria. You need to boost your immune system. There are plenty of great herbalists out there in the States—maybe find a local specialist who knows their stuff. They can give you some natural remedies to get you back on track. Plus, there is a massive variety of supplements available on the market here. People have talked about this extensively on various forums before.

ok👍

Is a lymph node the same thing as lymphoma?...

Hey everyone,
I was wondering if anyone here has dealt with this specific type of Lymphoma—I’d love to hear some "real world" experiences if you don't mind sharing...
Everywhere I look, it says this kind of Lymphoma is incurable and that it just keeps coming back, so I'm really curious to hear from people who have actually been through it—things like how long remission lasted, if anyone actually reached full recovery, and all that sort of thing.
Thanks so much!!!

Hello, everyone.
I’ve been scouring this Forum looking for information on this topic, but I haven't found much depth anywhere. It’s strange, really, considering they rank this as the second most common cancer in people.
I know there are plenty of people out there battling this, and I’m hoping to read more about your experiences. I want to hear advice from those currently fighting Lymphoma—or what some people still call swollen lymph nodes—as well as those who have come out the other side.
The reality is that this disease is incredibly aggressive. Unfortunately, it often doesn't get caught until it's already reached an advanced stage. 🙂

(A 17-year-old)
One more thing. Could someone tell me if it's normal to feel lymph nodes on the back of the neck? About 6 or 7 inches above the shoulder blade, I've felt some lumps.
I also have swollen lymph nodes under my jawline, and sometimes both sides of my neck swell up too.
I'm hesitant to see a doctor because, frankly, I'm terrified of what they might tell me. That's why I'm looking for your stories regarding the diagnosis process.
I keep telling myself everything will be fine, but the truth is, they've been swollen for about two weeks now. :/
Should I just pull myself together and go see a doctor? 😕 😢

Kenneth Walker27 said:Hello, everyone.
I’ve been scouring this Forum looking for information on this topic, but I haven't found much depth anywhere. It’s strange, really, considering they rank this as the second most common cancer in people.
I know there are plenty of people out there battling this, and I’m hoping to read more about your experiences. I want to hear advice from those currently fighting Lymphoma—or what some people still call swollen lymph nodes—as well as those who have come out the other side.
The reality is that this disease is incredibly aggressive. Unfortunately, it often doesn't get caught until it's already reached an advanced stage. 🙂

(A 17-year-old)
One more thing. Could someone tell me if it's normal to feel lymph nodes on the back of the neck? About 6 or 7 inches above the shoulder blade, I've felt some lumps.
I also have swollen lymph nodes under my jawline, and sometimes both sides of my neck swell up too.
I'm hesitant to see a doctor because, frankly, I'm terrified of what they might tell me. That's why I'm looking for your stories regarding the diagnosis process.
I keep telling myself everything will be fine, but the truth is, they've been swollen for about two weeks now. :/
Should I just pull myself together and go see a doctor? 😕 😢

For heaven's sake, kid, don't go thinking every swollen lymph node is a sign of Lymphoma. 😳
It’s most likely just an infection, and your lymph nodes are reacting to that. You need to get to a doctor, get some bloodwork done, and figure out exactly what's going on. In the meantime, start focusing on boosting your immune system—get on some vitamins, probiotics, or whatever else helps.
Cut the drama; you don't have a single reason to be acting like this.
By the way, saying this is the second most common type of cancer is completely wrong. I have no idea where you got that from. In reality, its incidence rate is much lower than carcinoma.

Here’s the link to the thread. (The title is slightly off, but I’m sure the mods will fix that in a bit.)

Look, no offense intended, but when you see a 22-year-old living under your roof pass away from Lymphoma, you don't just shrug it off. You start feeling every lump and bump on your own body. I don't get why people react so defensively to that. At the end of the day, I was just looking for some perspective. I actually just felt another one near my collarbone. I was hospitalized a couple of months ago dealing with tonsillitis, so I'll be heading to the doctor tomorrow. Is there any way to spot degenerative changes in the lymph nodes through a blood test? Never mind. I’ll update everyone once I have the results. 😁

Kenneth Walker27 said:Look, no offense intended, but when you see a 22-year-old living under your roof pass away from Lymphoma, you don't just shrug it off. You start feeling every lump and bump on your own body. I don't get why people react so defensively to that. At the end of the day, I was just looking for some perspective. I actually just felt another one near my collarbone. I was hospitalized a couple of months ago dealing with tonsillitis, so I'll be heading to the doctor tomorrow. Is there any way to spot degenerative changes in the lymph nodes through a blood test? Never mind. I’ll update everyone once I have the results. 😁

I have no idea why you think my reaction was over the top. 🤷
Listen, I get it—it’s gut-wrenching to watch a 22-year-old die from Lymphoma. But at the same time, I know firsthand, from dealing with my own cancer battles, how incredibly unhealthy it is to spiral into pure panic over every single diagnosis you could possibly find—especially the ones that aren't even malignant.
Blood tests can show your lymphocyte count, and if that number is spiking for no apparent reason, your doctor is definitely going to send you in for more testing.
If I had to bet, I'd say you're fine; you probably just have some inflammation going on related to that tonsillitis. Those bacteria basically tore through your system, and now your immune system is running full tilt, working overtime to fight back. That's why those nodes are acting up.
Focus on boosting your immunity, seriously!

Look, I wasn't even bracing for the absolute worst-case scenario, but this whole thing is just dragging on way longer than it should. I was discharged from the hospital two months ago, feeling like I was finally in the clear. Then, about two weeks back, these lumps started showing up, and they aren't budging. But hey, we'll just have to wait and see 😁

Kenneth Walker27 said:Look, I wasn't even bracing for the absolute worst-case scenario, but this whole thing is just dragging on way longer than it should. I was discharged from the hospital two months ago, feeling like I was finally in the clear. Then, about two weeks back, these lumps started showing up, and they aren't budging. But hey, we'll just have to wait and see 😁

It takes time to get back to baseline. For some people, certain nodes can stay permanently enlarged after a major bout of inflammation.
You should ask for an ASO titer test to check your strep levels (assuming strep throat was what triggered the tonsillitis in the first place). It’s entirely possible you've still got a lingering infection acting up under the surface without showing any other major symptoms.

Angela Wright said:It takes time to get back to baseline. For some people, certain nodes can stay permanently enlarged after a major bout of inflammation.
You should ask for an ASO titer test to check your strep levels (assuming strep throat was what triggered the tonsillitis in the first place). It’s entirely possible you've still got a lingering infection acting up under the surface without showing any other major symptoms.

If I were you, I'd push for a KKS, a UK, and an ultrasound with color Doppler. Honestly, though, I have my doubts the doctor will actually order all of them. There's a good chance I'll just get a KKS or a round of antibiotics and be sent on my way.
The swelling isn't localized; I've got nodes popping up all over. I think I even felt one in the groin area.
Heading to the doctor tomorrow. Thanks!😉

wiredhound522 said:Hey everyone,
I was wondering if anyone here has dealt with this specific type of Lymphoma—I’d love to hear some "real world" experiences if you don't mind sharing...
Everywhere I look, it says this kind of Lymphoma is incurable and that it just keeps coming back, so I'm really curious to hear from people who have actually been through it—things like how long remission lasted, if anyone actually reached full recovery, and all that sort of thing.
Thanks so much!!!

Dear everyone...
I’m really not sure if this information will still be useful to any of you after all these years...
👍
I personally went through a battle with large B-cell Non-Hodgkin lymphoma back in 2004—and even though the mortality rate sits at around 50%, I managed to pull through...
One morning, I woke up to find this egg-sized swelling right in my armpit—it was quite a shock. For nine days straight, absolutely nothing happened... it didn't grow, and it didn't even hurt...
After that, I headed over to my doctor at the local hospital—they ended up performing a biopsy on the growth to get it analyzed...
Within twenty-four hours of the puncture, this unbearable pain set in—honestly, I thought I was going to lose my mind...
And then, that damn thing just started growing—so fast, too... within fifteen days, the lump in my armpit had swelled up to the size of a handball, and the pain was just absolutely excruciating...
At the Holy Spirit hospital, they determined there isn't any inflammation present—so they told me to head over to Mercury instead...
At Mercury, they kept me under observation right away—they really put me through the ringer with tests—and then I was stuck waiting ten days for my results... all while dealing with those awful pains and my lymphoma growing...
They've decided to go ahead with surgery—and they're planning to remove that large growth while they're at it...
I've been having my wound dressed every two days, yet it still hasn't healed after a full month...
It’s been about a month since I started dressing the area, but lately, that lymphoma node has started growing again—bit by bit—until it's roughly the size of a ball...
It wasn't until then that they finally realized they'd completely missed my chemotherapy dose...
They've scheduled me for six rounds of chemotherapy—one treatment every fifteen days...
After just one week, that ball-sized lymphoma has completely vanished...
The chemotherapy was just unbearable—it felt like everything was under attack, from my toenails right up to the last hair on my head. Between the constant vomiting and my liver swelling by over 17 cm... I didn't get a single decent night's sleep for three months...
I’d honestly rather die than have to face a seventh round of chemo...
And after that, little by little, I started to find my way back...
At first, I made an effort to show up for all my follow-up appointments—but after a while, I just couldn't do it anymore... honestly, even the mere thought of sitting in that waiting room was enough to make me nauseous.

The fundamental challenge when it comes to treatment is that delicate moment where you have to touch, biopsy, puncture, or perform surgery on a lymphoma node...
If they had just started my chemotherapy right away, I think the recovery process would have been so much easier—faster, too, and honestly, a lot less painful...

Can I ask a quick question?
What are the odds that I’m dealing with Lymphoma if my blood work comes back totally normal (CBC, ESR, CRP, liver enzymes, alkaline phosphatase)?
Basically, for about two weeks now—I just happened to check, so it might have been going on longer, but definitely no earlier than mid-November—I've been running a low-grade fever.
It’s gone by the morning and evening, but during the day, it hits around 99 degrees.
Last night I woke up drenched in sweat, and now my skin is suddenly itching like crazy. I don't know if it's just nerves (I'm currently being treated for anxiety), but I keep reading that these are classic Lymphoma symptoms.
I definitely don't have any swollen lymph nodes in my neck or armpits, and I'm not even sure if that thing in my groin is actually swollen or if it's just how I normally feel.

Thanks