Living with Lymphoma

Did you notice any other symptoms besides that lump on your neck? What did the lump actually feel like?

analogmaker34, thanks for the reply. So, you were asymptomatic... We aren't sure about the exact stage yet until they finish analyzing the CT scans and everything else. For now, it's IIb.

Bob, sending all my best to your husband.

Linda Flores2 said:analogmaker34, thanks for getting back to me. So, you were asymptomatic... We actually don't know the exact stage yet; we have to wait for the results from the additional CT scans and everything else. For now, it's IIb.

Bob, sending all my best to your husband.

Thanks for the kind wishes! Honestly, trying to keep up with all these threads and diagnoses is overwhelming. I’ll admit, even at 48 with a decent education, I felt completely clueless the moment the doctors told my husband he had Non-Hodgkin lymphoma, specifically Mantle cell. He’s a journalist, and even he was lost. I guess it's just human nature—we always think these things only happen to other people!
He just finished his seventh round of chemo. There's one more to go, and then we'll look at alternatives to ensure he's fully cured, like an autologous stem cell transplant or potentially using his brother's cells if they're a perfect genetic match. I'm not sure how much you all know about that process, but we've watched plenty of videos and are mentally bracing ourselves if that's the path we need to take.
How did it start for him? It began with two symmetrical lumps right where the skull meets the neck. After taking some medication, those actually disappeared. But three months later, two more lumps popped up in his neck near the tonsils, along with terrible night sweats, hoarseness, weight loss, and unusual snoring at night. When we got his bloodwork back, his white cell count was 171,000!!! His spleen, acting like one massive lymph node, was swollen to about 12 inches! He’s handling the chemo really well, except for those zero days when his platelets and both red and white cell counts bottom out. During those times, he needs transfusions for blood and platelets.
So, that's our situation. Please, keep sharing your stories here. Everything you find online is just "official medical info," but the real human connection and shared experiences are something else entirely.
Sending my warmest wishes to everyone. I hope for quick recoveries and for everyone to get back to their normal lives soon. Sometimes, staying active and fighting back is the only way to beat this!
Best, Bob

My mom went through Lymphoma about 16 years ago.
Chemo was the first step—then she focused on vitamins, eating better, staying active, and leaning on her faith...
Fast forward to today, and she’s still here and doing pretty well—aside from the usual aches and pains you get with age, of course.
I know everyone's journey is different, but still—it feels encouraging to share that, so...

I know I’m digging up a thread from the bottomless pit here...
but please forgive me...
I was just wondering if anyone might have some positive news to share
regarding treatment for Hodgkin lymphoma...
Lately, I seem to only come across stories where people had to fight
through at least three different starting points... and I'm just not sure if I have that much left in me...
Thanks

Of course we aren't going to hold that against you.

I don't have any personal experience or medical expertise to offer, but I can definitely send a huge mountain of good vibes and positive energy your way!

And listen, you *are* going to find the strength you need. We’re all going to chip in and send you some of our own strength to help make this easier 😘

From what I understand, Hodgkin has a much better prognosis than Non-Hodgkin lymphoma, and the recovery rates are incredibly high.

But honestly, you've probably already scoured the entire internet looking for answers by now. If you haven't... let me know...

Thanks so much for the kind wishes 🙂

Yeah, I’ve learned quite a bit about all this...
But right now, I'm just waiting on my follow-up appointment to find out what happens next.
It's basically one of two extremes...
Either I'm officially done with treatment, or I'll be heading in for a
bone marrow transplant... so I'm feeling a little on edge, I guess...
But I'm staying strong—I have to push through. 🙂

😘 Hey, Casey Palmer5

You’ll make it through this; you have the strength, and you’ve already proven that more than once.
I think I mentioned my friend to you a while back—she went through a long, grueling fight with her diagnosis, but enough years have passed that she’s likely forgotten the worst of it. She looks fantastic and is just living her life like anyone else.
I don't know all the specifics, but I do know things finally started looking up once she began her treatment in New York City.

Does anyone happen to know if this disease shows up at all on a standard blood count? My white blood cell levels are perfectly normal, yet my lymphocyte count sits at 0.35 when the range is 0.25-0.33, and I am currently dealing with a dental issue right above that swollen lymph node area.

On a different note, my blood work indicates an eosinophil level of 0.06 when the limit is 0.03, and although my doctor suggested it might be due to allergies, I don't have any allergies and I'm just nursing a common cold right now.

It’s hard to say... I've been dealing with this for a year now, and I'm honestly not sure how much it actually impacts my bloodwork.🙂
I really feel like you can tell just by looking at the copper levels...
I guess I just always get a little bit of anxiety whenever those copper numbers come up.

Bob said:After checking my blood work, my white blood cell count hit 171,000!!!

It is clear that this is indeed impacting the white blood cell counts, and I cannot help but think that if the bloodwork eventually returns to completely normal levels, there might just be no chance of the disease being present at all.

🙂Does anyone actually know what "tissue-type lymphoma" means? A friend of my mom's is dealing with this—specifically, she wrote down "leukemic tissue-type lymphoma."

I’m pretty sure a lot of people here on the forum already know exactly what I'm talking about. Someone will probably jump in and elaborate even more. A friend of my mom's was recently hit with that diagnosis, and it's pretty serious.

Has anyone else dealing with this stuff actually felt any pain in that swollen gland? I’m asking because I’ve got one that’s acting up, and honestly, I can't tell if it’s just some random inflammation or—God forbid—if it might be Lymphoma.

Jamie Edwards32 said:Has anyone else dealing with this stuff actually felt any pain in that swollen gland? I’m asking because I’ve got one that’s acting up, and honestly, I can't tell if it’s just some random inflammation or—God forbid—if it might be Lymphoma.

Take Hodgkin cases, for instance. The disease most commonly shows up as an enlarged node or cluster of nodes (which feel firm and painless) in the neck about 70% of the time, in the armpit 20% of the time, and in the groin roughly 10% of the time.

As for Non-Hodgkin:Most patients present with painless, swollen lymph nodes. Before you can ever land a diagnosis of lymphoma, you have to rule out bacterial, parasitic, or viral infections first. Generally speaking, any node that stays swollen for more than 4-6 weeks and measures larger than 1 cm in diameter should be treated as suspicious; that's when you need a biopsy or to have the whole node extracted and analyzed. Patients also frequently report systemic symptoms (respiratory issues, digestive problems, etc.). A lot of people complain about chest pressure and a persistent, irritating cough. If a large mass of tumor cells develops in the abdomen, or if the spleen starts swelling, you'll see symptoms like abdominal bloating, pain, fullness, feeling full too quickly, or even bowel obstructions.

For more info on lymphomas:
http://www.cancer.org/lymphoma

So, I'm 17. I've had this swollen lymph node for about 6 weeks now—it's pretty hard, moves around when you touch it, and sometimes it actually hurts if I press on it. It's roughly 1.5 to 2cm wide, though you can't really see it just looking straight ahead; you only notice it when I turn my neck to the left, where it sticks out maybe 3.5mm. I went ahead and did some tests—throat and nose swabs came back negative, urine culture was clear (no bacteria), Epstein-Barr was negative, and for Cytomegalovirus, they just said the antibodies were high—IgG is at 140 but IgM is negative. My sedimentation rate and full blood count are all fine. I also ran some other labs—ALT, AST, bilirubin, calcium, fibrinogen—and everything is totally normal (perfect, really). My throat has been looking red for a while too, maybe a couple of years? I don't think it used to be this red, but it doesn't hurt. I had an ultrasound done about 20 days ago, and it showed enlarged hyperplastic lymph nodes on both sides, with the right side hitting a max dimension of 15x5mm.

Jamie Edwards32 said:So, I'm 17. I've had this swollen lymph node for about 6 weeks now—it's pretty hard, moves around when you touch it, and sometimes it actually hurts if I press on it. It's roughly 1.5 to 2cm wide, though you can't really see it just looking straight ahead; you only notice it when I turn my neck to the left, where it sticks out maybe 3.5mm. I went ahead and did some tests—throat and nose swabs came back negative, urine culture was clear (no bacteria), Epstein-Barr was negative, and for Cytomegalovirus, they just said the antibodies were high—IgG is at 140 but IgM is negative. My sedimentation rate and full blood count are all fine. I also ran some other labs—ALT, AST, bilirubin, calcium, fibrinogen—and everything is totally normal (perfect, really). My throat has been looking red for a while too, maybe a couple of years? I don't think it used to be this red, but it doesn't hurt. I had an ultrasound done about 20 days ago, and it showed enlarged hyperplastic lymph nodes on both sides, with the right side hitting a max dimension of 15x5mm.

Have you checked your ASO levels (antistreptolysin O titer)? That’s the test used to see if there's a lingering strep infection in your system. It's entirely possible that a persistent inflammation caused by strep is what's keeping that lymph node swollen.

So, they gave me two boxes of Sinacil because my lymph nodes just weren't budging—totally useless, I guess—and now I'm sitting here wondering if I should actually go through with that test. I mean, I could do it, but I'm really not sure if it's even worth the hassle, you know? If I actually have those strep bugs, wouldn't the antibiotics probably just shrink everything down anyway? What do you think... is the test even necessary at this point?

Here is another link for you http://new.stetoskop.info/Limfomi-im...46-content.htm

Jamie Edwards32 said:So, they gave me two boxes of Sinacil because my lymph nodes just weren't budging—totally useless, I guess—and now I'm sitting here wondering if I should actually go through with that test. I mean, I could do it, but I'm really not sure if it's even worth the hassle, you know? If I actually have those strep bugs, wouldn't the antibiotics probably just shrink everything down anyway? What do you think... is the test even necessary at this point?

Just get it done, along with a throat swab. (Do you even have tonsils left, or did you have them out already?) Not every bacterium responds to antibiotics in the same way. If that node doesn't shrink, you need to go in for a biopsy; there really isn't any other way.🤷
Focus on boosting your immune system. Honestly, the market is absolutely flooded with antioxidants these days, and there’s been plenty of discussion about them here on the Forum.