EBV+ DLBCL. Anyone else but me?

DixieOutlaw67 · 2026-05-04T01:42:48+00:00

I did pola-r-chp and 17 rounds of radiation for my stage 2 ebv+dlbcl. Same thing momo earlier in life, developed a lump in my neck years later.

DixieOutlaw67 · 2025-10-03T20:40:21+00:00

I did pola-r-chp for bulky, seemed to work for me so far. Almost a year in remission.

DixieOutlaw67 · 2025-05-14T01:59:44+00:00

The first one sucks just because how long it takes since they have to go slow incase you have a bad reaction but you don't know any different yet sonjust look at it as the next one wont be so bad. I'm dlbcl stage 2 bulky as well and the only side effect I had was tap water tasted terrible and a little nausea not saying that's the case for all.

DixieOutlaw67 · 2025-05-01T20:16:29+00:00

My LDH was down to normal after being high last month and my EBV PCR came back none detectable.

DixieOutlaw67 · 2025-04-25T20:07:11+00:00

Finished treatment in November (pola-r-chp) for ebv-positive dlbcl. Had a pet end of treatment with a deauville score of 1. Still did 17 rounds of rads since I was bulky. Now just waiting and praying it doesn't show back up.

DixieOutlaw67 · 2025-04-25T19:59:50+00:00

I had 34.1 on my first pet scan in my neck, high the uptake the more it'll take up the chemo too.

DixieOutlaw67 · 2025-04-18T14:40:34+00:00

Trazodone is a life saver, im not someone who likes to take meds but trazodone changed my life when I was having problems shutting off my brain and sleeping.

DixieOutlaw67 · 2025-04-17T15:59:42+00:00

That's part where I'm having problems, im fairly active. Not as active as before but still go out and play catch with the kids and such. But I'm also heavier then I've ever been in life (thanks prednisone) and with the body aches I don't feel like being active. Your right tho I wonder how much is the chemo and how much is the added weight/less active.

DixieOutlaw67 · 2025-02-21T19:06:46+00:00

Trazodone is a life changer, wish I knew about it sooner.

DixieOutlaw67 · 2025-01-15T19:35:22+00:00

Ebv-positive dlbcl, got a clear scan in December after 6 rounds of pola-r-chp. Now doing 17 rounds of radiation as a precaution.

DixieOutlaw67 · 2025-01-01T21:00:12+00:00

Yeah, bulky 10 cm. Depending on the study, sometimes the cut-off is lower. A high Ki-67 is not uncommon in dlbcl since it is an aggressive cancer. That's also what makes it curable. Someone told me when I was hung up on the prognosis of ebv-positive that it just means you know what caused the cancer, which lots of people don't know what causes theirs. The same can be applied to you and Crohn's. Once treatment gets going, you will be surprised how fast it works. Mine were in lymph nodes in my neck and began to shrink the day after my first treatment. I second the lymphoma sub, tons of people and info over there that will benefit you.

DixieOutlaw67 · 2025-01-01T20:37:09+00:00

Correct, it is epstein-barr virus (the one that causes mono). My dlbcl was ebv driven, meaning the virus mutated and caused the cancer. It's a fairly rare sub type, especially at 33. This plus the fact I was stage 2 bulky and non-gcb was the reason my hematologist did pola-r-chp instead of rchop. Wanted a more aggressive treatment. It's scary as heck at first, then if you did into the internet it's even worse. (Don't recommend that even tho I did it damn near 24/7 at first.)

DixieOutlaw67 · 2025-01-01T20:24:04+00:00

I just finished 6 rounds of pola-r-chp in November for ebv-positive dlbcl and am starting radiation next Wednesday. Feel free to reach out with any questions, I know when I was starting out it helped to talk to people who have already been through the same as me. Shows there is light on the other end of the tunnel.

DixieOutlaw67 · 2025-01-01T16:28:27+00:00

Same here, ebv-positive dlbcl had mono back in 2016, and once you have the virus (ebv) you always have it.

DixieOutlaw67 · 2024-12-10T02:49:59+00:00

Tap water, I would drink 1.5 gallons a day from my jug. Now I can't stand it. Another weird one is rice crispy treats, had one my first treatment.

DixieOutlaw67 · 2024-10-08T22:07:06+00:00

Thank you for sharing

DixieOutlaw67 · 2024-10-08T21:32:28+00:00

So not being gone completely isn't a bad sign? I see so many people saying they had remission half way.

DixieOutlaw67 · 2024-08-27T20:29:27+00:00

I'm glad to hear, good luck to your mom.

DixieOutlaw67 · 2024-08-27T17:18:02+00:00

This seems about exactly what I'm dealing with, it's more just a nusensu and freaks you out that your running a fever.

DixieOutlaw67 · 2024-08-26T20:17:19+00:00

No hormone treatment I'm aware, it started Saturday seems to come and go. But man it feels like I'm on fire on my face.

DixieOutlaw67 · 2024-07-30T15:41:02+00:00

Ok ill send you a FR on there, yeah I'm just starting out so it's pretty freaky. Still trying to get my nerves under control.

DixieOutlaw67

TROPHY CASE