r/lymphoma • • Aug 25 '26

Moderator Post [Pre-Diagnosis Megathread] If you have NOT received an OFFICIAL diagnosis of lymphoma via biopsy, you can comment here only. Plead read our subreddit rules and the body of this post first.

13 Upvotes

READ THIS BEFORE COMMENTING!

Do not comment if you have not seen a medical professional. If you have not seen a doctor, that is your first step. We are not doctors, we are cancer patients, and the information we give is not medical advice. We will likely remove comments of this nature.

If you think you are experiencing an emergency, go to the emergency room or call 911 (or your region’s equivalent).

Our user base, patients in active treatment or various stages of recovery, may have helpful information if you are in the process of potentially being diagnosed with (or ruling out) lymphoma. Please continue reading before commenting, your question may already be answered here:

  • There are many (non-malignant) situations that cause lymph nodes to swell including vaccines, medications, etc. A healthy lymphatic system defends the body against infections and harmful bacteria or viruses whether you feel like you have an illness/infection or not. In most cases, this is very normal and healthy. Healthy lymph nodes can remain enlarged for weeks or even months afterward, but any nodes that remain enlarged, or grow, for more than a couple of weeks should be examined by a doctor.
  • The symptoms of lymphoma overlap with MANY other things, most of which are benign. This is why it’s so hard to diagnose lymphoma and/or even give a guess over the internet. Our users cannot and will not engage in this speculation.
  • Many people can feel healthy lymph nodes even when they are not enlarged, particularly in the neck, jaw, and armpit regions.
  • Lab work and physical exams are clues that can help diagnose lymphoma or determine other non-lymphoma causes of symptoms, but only a biopsy can confirm lymphoma.
  • If you ask “did anyone have symptoms like this...,” you’re likely to find someone here who did and ended up diagnosed with lymphoma. That’s because the users here consist almost entirely of people with lymphoma and, the symptoms overlap with MANY things. Our symptoms ranged from none at all, to debilitating issues, and they varied wildly between us. Asking questions like this here is rarely productive and may only increase your anxiety. Only a doctor can help you diagnose lymphoma.
  • The diagnostic process for lymphoma usually consists of: 1. Exam, labs, potentially watching and waiting, following up with your doctor-- for up to a few months --> 2. Additional imaging. Usually ultrasound and/or CT scan --> 3. If imaging looks suspicious, a biopsy. Doctors usually will not order a biopsy, and your insurance or national health program usually won’t approve a biopsy until these steps have been taken.

Please read our subreddit rules before commenting. Comments that violate our rules (specifically rule #1) will be removed without warning: do not ask if you have cancer, directly ("does this look like cancer?"), or indirectly ("should I be worried?"). We are not medical professionals and are in no way qualified to answer these types of questions.

Please visit r/HealthAnxiety or r/AskDocs if those subs are more appropriate to your concern. Please keep in mind that our members consist almost entirely of cancer patients or caregivers, and we are spending our time sharing our experiences with this community. You must be respectful.

Members- please use the report button for rule-breaking comments so that mods can quickly take appropriate action.

Past Pre-Diagnosis Megathreads are great resources to see answers to questions that may be similar to your own:

Pre-Diagnosis Megathread 1

Pre-Diagnosis Megathread 2

Pre-Diagnosis Megathread 3

Pre-Diagnosis Megathread 4

Pre-Diagnosis Megathread 5

Pre-Diagnosis Megathread 6

Pre-Diagnosis Megathread 7

Pre-Diagnosis Megathread 8

Pre-Diagnosis Megathread 9

Pre-Diagnosis Megathread 10

Pre-Diagnosis Megathread 11


r/lymphoma • • Oct 25 '25

Moderator Post Newly diagnosed? Start here!

39 Upvotes

We're very sorry you've joined this very stupid club, and hope this sub can be a valuable resource, especially for those aspects of the journey that sometimes aren't as well covered by the medical profession, in particular the experience of having lymphoma and being treated for it.

While we encourage diagnosed folx to post as often as they feel they need to, there are certain common questions about the various lymphoma types and treatments that tend to come up quite frequently, and the answers don't tend to change very quickly. As a result it's worth waiting until your lymphoma type and treatment have been identified, then spending some time going back through the sub to pick up the many pearls of wisdom shared by sub members over the years. The search links below are a good start for some of the more common types and treatments:

Search links

Obviously this list is by no means exhaustive (there are ~80 different types of lymphoma, and hundreds of treatment combinations), and if you don't see your specific lymphoma type and/or treatment listed here, that doesn't mean it hasn't been discussed in the sub in the past - it's worth searching to see if there are relevant posts.

And as always, if your question isn't answered by existing posts, please don't be shy about posting! Our goal in sharing these links isn't to discourage newly diagnosed folx from posting, but rather to help you get as much information as possible, including (especially!) from the wealth of experiences posted by lymphomies from times past.

User flair

If you'd like to add a user flair (which is entirely optional, but is often used to let other sub members know what type(s) you have and treatment(s) you're getting), you can do it by:

  1. Opening a browser and navigating to the sub's home page, making sure to log in if you haven't already.
  2. On desktop, you should see your username in the column to the right. On mobile browser, you need to tap "About" first.
  3. Beside your username there's a little pencil icon (on desktop this only appears when your move your mouse cursor over your username). Click or tap this icon.
  4. Enter your desired user flair in the "Edit flair" box that appears, then click "Apply"

There used to be a way in the native mobile apps to do this directly, but as of October 2025 that method doesn't seem to work for some unknown reason.


r/lymphoma • • 1h ago

General Discussion Should I cut my hair now or wait

• Upvotes

I 20m am about to start chemo treatment (stage 2)in the next few weeks and I love my hair but I’m dreading losing it I love my hair so much. I’ve been thinking about cutting it the last few days. Ik at the end of the day it’s up to me but I want to hear some other inputs from others that have had it and if they did or didn’t.

I’ve seen some other subreddits and people there have told people to just do it cause it going to happen and you might as well do it on your own accord rather than when it happens.

I’m basically just looking to see if other have done this and what there thought process was for it.


r/lymphoma • • 7h ago

DLBCL Night sweats 4weeks after end of treatment dlbcl

9 Upvotes

Finished treatment 4 weeks ago for stage 3 dlbcl. Interim scan in Aug showed complete metabolic response deauville 1. Had recent night sweats and fatigue. How concerned should I be? Seeing Dr on Monday.


r/lymphoma • • 9h ago

DLBCL Picc line

6 Upvotes

Hey my fellow lymphomies

Next week I will be at the hopsital foe a one night stay. I will get a CT staging scan and also a picc line. The day after we r I will get my third round of chemo.

I guess thats the reason I don't get a port. Maybe Because 6 rounds of POLA-R-CHP are planned. And so only 4 rounds are left now or because of my Factor V Leiden thrombophilia (Coagulation disorder).

I am not sure but I have some questions.

I love alone, can I manage to put on a protection for the shower alone?

Which protection thing is the best?

And do I have to go to the doctor every week to get my picc line flushed and cleaned ?

I want to do some sport exercises at home, can is till do that?

Will i feel it in the dau to day life or is my body abd mind getting used tk it ?

Thanks for your help


r/lymphoma • • 1d ago

Follicular Mid treatment PET

Post image
114 Upvotes

Photo from mid treatment R-Chop for FL…feeling grateful


r/lymphoma • • 15h ago

DLBCL Mid way scan results

7 Upvotes

Stage 4 DLBCL here just recovering from round 4 of Pola rchp

I had a mid treatment CT (not pet) scan that showed "encouraging" but partial response. I'm a bit gutted as I see a lot of people get full response from sometimes a couple of rounds. I'd had 3 at that point and got a partial response.

They haven't changed anything with regards the chemo plan so I guess they are thinking we're on the right track but did anyone else get a similar result in the interim scans? I have a slight complication in that I'm transformed NLPHL so that lymphoma might remain active I'm told (I've already been told not to expect a "clear" end PET due to the low grade NLPHL. So remission for me might be complicated.

I feel well outside the first week of the treatment cycles the bumps I could feel are gone. I'm sure we all feel a bit lost until that end scan eh?!


r/lymphoma • • 18h ago

DLBCL Runny nose

6 Upvotes

Have already notified my care team but my nose will not stop running. I have mostly clear drainage. They have added to my antibiotics regimen but its been going on for like 2 or 3 weeks. I have my next round of pola r chp next week. Is this a normal side effect? Allergies, low immune system or something else? I have heard if you lose nose hair it can make your nose run. I have been taking all the 18 pills a day they prescribe me as well as taking plenty of precautions for my immune system. No other symptoms of cold, including normal temperature. I have been taking temp a tim es a day


r/lymphoma • • 9h ago

NScHL Hodgkins Lymphoma, Syncytial Variant

1 Upvotes

Recently diagnosed with NSCHL, but the Syncytial Variant. There is not much information on this variant, and I want to see if anyone else has experience with this variant. The doctor has never seen this variant, so that makes me a bit nervous, but plans to treat it with N-AVD.


r/lymphoma • • 16h ago

General Discussion Can i travel?

3 Upvotes

Has anyone travelled abroad for work while on brentuximab vedotin (BV)? I have 4 sessions before my autologous stem cell transplant, but I have a 2-week work opportunity abroad that I’m hoping to take after my infusion and before my transplant. Has anyone done something similar? Did your doctor allow it? Would love to hear your experiences!


r/lymphoma • • 22h ago

cHL Deauville 4 after one chemo session. Stage 3 CHL

8 Upvotes

Got my pt scan early. Only after one n-avd session. My spleen is normal now but got some to big boys on my chest that are left now. Currently at Deauville 4

4.7 x 3.4 cm station 5 lymph node

2.9 x 1.7 cm station 3A lymph node

Finally no more b symptoms i feel somewhat normal but the war isn't over


r/lymphoma • • 1d ago

cHL Hi everyone 26y m from india had swollen nodes on armpits and collar bone done biospy doctor told me it is cHL starting treatment from tomorrow too much scared

11 Upvotes

r/lymphoma • • 22h ago

cHL fertility post ABVD

4 Upvotes

Hi, I am 20 and did 4 cycles of ABVD for hodgkin lymphoma finishing August 2025 .I did fertility preservation prior to chemo, but only got 5 eggs frozen and they said it'll be a 20% chance of a birth with these. My periods continued throughout chemo.

Im now 14 months post chemo and got a blood test this week to check my fertility levels. My AMH was low for my age, at 10pmol/L. I am obviously nervous around whether I'll be able to have kids. Has anyone had any experience regarding this/ able to share any thing to help?


r/lymphoma • • 1d ago

General Discussion Life after treatment?

11 Upvotes

Hi everyone. I’m 21F, was diagnosed with stage 4 Hodgkin’s Lymphoma in April, doing 12 total treatments of AVD + NIVOLUMAB (immunotherapy I believe). Also getting Lupron injection once a month to preserve ovaries. I have my last treatment on Monday. I have a couple of questions to those who recovered. I feel as though I’ve been in a dissociative state throughout most of treatment, not “letting it” impact me much aside from treatment and post-treatment days that are awful of course. But I am afraid that once treatment ends, I won’t go back to “normal”. I completely understand that I will never be the same person I was before and, honestly, am quite grateful for that as I have grown from the experience tremendously and can appreciate that. I’m more afraid that the brain fog/chemo brain won’t go away, and exhaustion/fatigue will persist. My care team says it takes about 3 months or so to feel normal again, and I am young and will bounce back quite quickly, which I do believe. I am just wondering how long it took for chemo brain and fatigue to go away/get better, and what things helped you in recovery? Thank you so very much.


r/lymphoma • • 23h ago

MZL (incl MALT/Splenic/Extranodal) Finished 8 Weeks of Rituximab, next steps?

5 Upvotes

Today, I just finished my 8th infusion. I had a really rough time with the "most tolerated" treatment and I was really relieved to be done. I don't have my follow up PET for another few weeks but I'm hopeful.

Given my lymphoma is in the lungs, I'm a little more concerned that a PET won't be high contrast enough to see anything with EMZL being so low in metabolic activity. My first PET basically showed nothing, but my presurgical high res CT showed all of my lung lesions. I'm just living with uncertainty in everything.

That said, I'm celebrating the small steps. 8 weeks done and we will reevaluate later. For now, I can start trying to get back to my usual routine unencumbered by IV benadryl. I'm trying to stay positive. Anyone here with MALT or EMZL with advice?


r/lymphoma • • 19h ago

Monthly Surveys & Studies Megathread

2 Upvotes

This thread is where individuals and organizations can post studies and surveys for r/lymphoma members. Any criteria or requirements for participation in your study/survey must be clearly identified. Also, you must state (in plain language) whether your organization is academic, non-profit, or for-profit in nature. All posts are subject to removal at the moderator's discretion for any reason. Please note that this subreddit is primarily a cancer support group for cancer patients, please be respectful.


r/lymphoma • • 1d ago

DLBCL DLBCL treatment/ Journey

9 Upvotes

Hi everyone!
I was recently diagnosed with non-germinal centre DLBCL (diffuse large B-cell lymphoma) and am expected to start treatment soon.

I recently moved to a new city and started university, so I’m struggling with figuring out how to balance school, treatment, and life in general.

I’m wondering if anyone has managed to continue school or work while going through treatment? I’m hoping to finish my semester in December and then take a break, but I’m not sure if that’s realistic or if I’d be better off taking time off now.

I’m already a mature student, so the thought of putting my education on hold for another year feels like a lot.

I also unfortunately have a pretty intense fear of vomiting, which makes the thought of chemotherapy even more overwhelming.

My diagnosis has taken quite some time, and it’s believed the lymphoma may have been developing since February 2025.

I’d really appreciate hearing about anyone’s experiences, how treatment affected your day-to-day life, and whether you were able to maintain some normalcy throughout it.

Any advice, opinions, or personal journeys would mean a lot! ❤️


r/lymphoma • • 1d ago

PMBCL Low & high blood counts but clear in latest PET Scan

5 Upvotes

(F23) Finished 6x RCHOP chemo Jan 2026, radiotherapy April-May 2026. I’ve been in remission since then. I had my PET Scan last Oct 12 2026 and the result is great, I am clear, still in remission. Ds3 and scar tissue size decreased.

However I had my CBC test Oct 14 2026 and there were some weird results according to my oncologist. She let me repeat the test but it came back the same. She referred me to a hematologist for a further consultation this Saturday.

All are normal except for having:
low hematocrit 11.9 (normal 37.7-47.9)
low rbc 1.06 (normal 4.0-5.5)
high mcv 112.3fL (normal 80.0-97.0)
high mch 124.5pg (27.0-31.2)
high mchc 110.9g/L (31.8-35.4)

I am so scared it might be due to leukemia. Is it possible to have leukemia even though I am clear in my PET Scan?

But then, I tried to research and it shows macrocytic anemia. Is it possible to have macrocytic anemia as a late or delayed side effect of chemo even after finishing it for a couple of months?

My head hurts thinking about it. I just can’t help but think about the worst since there is a risk of developing secondary cancer. As of now, I don’t feel any symptoms at all. I am just stressed because recently I’ve been feeling like myself again, back in uni, but then here I am, will most likely deal with another health concern for the nth time.

Any thoughts please? Or kind words to lift up my mood? :(


r/lymphoma • • 1d ago

General Discussion Prednisone weight gain and moon face

8 Upvotes

Help! I have stage 2 dlbcl and I am going through da-epochr. I am taking 220mg of prednisone for 5 days each round and I am so puffy and have gained weight so quickly. I am about to do round 5 out of 6 total so almost done but has anyone else experienced this weight gain? How long did it take to get back to normal? I can’t believe how much weight I’ve gained in such a short amount of time. Thanks!


r/lymphoma • • 1d ago

Foundation / Academic / Research In-vivo CAR-NK research - promising for T cell lymphomas?

5 Upvotes

Just stumbled across this research [1], which seems particularly relevant for the T cell lymphomies.

The tl;dr is: “MIT engineers have developed a new way to program natural killer (NK) immune cells to target cancerous T cells or T cells that have become autoreactive, leading to diseases such as lymphoma and autoimmune hepatitis.”

[1] https://phys.org/news/2026-10-nanoparticle-reprograms-nk-immune-cells.html


r/lymphoma • • 1d ago

DLBCL Interim PET results tomorrow - questions to ask?

4 Upvotes

I’ve got a meeting with my consultant tomorrow to discuss the results of my interim PET CT scan, which I had yesterday after two rounds of R-CHOP.

Obviously having not done this before, I wondered if anyone had any advice or wisdom about how to approach it and what questions I should ask?

I’m not really the sort of person who likes to know loads of details about what is going on - in my head I just want to know if the treatment is working, what the implications are of the results, whether any changes might be needed etc. But I probably should do better than that!

Thank you

PS: I HATE getting scanned. My brain comes up with all sorts of elaborate ways to convince me I need to panic 😅


r/lymphoma • • 1d ago

DLBCL Remission follow up

11 Upvotes

Hello,

It is hard to believe that a full year has passed since I completed my six rounds of R-CHOP chemotherapy. While life has improved in many ways, I am currently struggling with a lingering sense of unease.

For context, I had a follow-up PET scan in April that resulted in a Deauville score of X, as some inguinal nodes showed mildly elevated activity. At the time, my doctor attributed this to the HPV vaccine I had received earlier that month and was not concerned.

I recently underwent another scan and have not yet discussed the results with my physician. The Deauville score is X again; if I were still undergoing active treatment, this would be classified as a 5. The radiologist's report indicates an enlarged lymph node in my right axilla, two mildly active nodes in my cervical region, and another in my left axilla.

The frustrating part is that I am currently dealing with the flu, eczema on my right arm, and an injury to my left hand. While these factors could potentially account for the increased activity, I cannot help but feel concerned.

How is everyone’s experience with remission? Is it consistently stable, or is it often accompanied by a sense of uncertainty?


r/lymphoma • • 2d ago

Celebration Surviving and thriving nearly 19 years after being diagnosed with Stage 4 Hodgkins!

Thumbnail gallery
114 Upvotes

May 2027 will mark 15 years since my last cancer treatment of a 5th cycle of Adcetris (Brentuximab Vendotin). Since then, I’ve continued to develop and expand my skills as a glass artist. For years, even before my diagnosis, I’ve struggled to create a full body dragon that I was happy with. Finally, within the past year, I’ve made the first three full dragons that I’m happy with and here they are!

The legend of the Koi swimming upstream towards the dragon’s gate symbolizes perseverance, overcoming adversity, and transformation. Coincidentally, I learned of this Japanese and Chinese story as I finished the first one. I see a parallel and my own journey swimming against the cancer current and its challenges, continuing forward, and eventually reaching a place I once couldn’t imagine.

As I approach 15 years cancer, free, creating these dragons, feels like another milestone in that journey – not just art, but in life itself as a cancer survivor. Never stop swimming against the current! 💪


r/lymphoma • • 2d ago

General Discussion Partner and I are having a hard time moving forward, advice needed

10 Upvotes

Hey all, I’ll try to keep it short. My (23f) partner (28m) got hospitalized multiple times back to back a couple months ago due to what we thought was sepsis from an abcess. After lots of tests, they narrowed it down and conducted a biopsy, which came back last month and found out that he has a type of ALCL. Long story short, we got him in oncology another month later (after much insistent advocation and transfers) and they said it could be curable. After 4 days straight of intensive chemo (and a 3rd hospitalization), the tumors had almost completely shrank, although the road is long from over bc he’s still got about 4 more months of chemo and a necrotic wound that’s just now healing that the main tumor shrank.

Now, that’s all great news. The problem is so much happened in such a short time and it feels like we’re both spinning. His life got completely derailed and went in a direction he never thought it’d go, I was thrown into a caretaking role just after starting 3 different jobs and graduating college. His childhood dog died while he was in the hospital, and he went into septic shock and almost died in front of me one of those nights. Not to mention him being in agony from pain daily (the tumors got as big as tennis balls on the neck!), the stress of both of us advocating and orchestrating all things insurance and medical, and the psychological impact from his experiences and unexpected stays in the hospital where he got multiple other devastating diagnoses. My own personal health and financial issues came up out of nowhere too. Just one of those life timing things that seem to happen when you’re in the worst of it, lol.

Thing is, it’s been a couple months now and as we’ve shared with each other, it still feels like limbo. Yes, he’s responding to treatment, and his energy is coming back. This whole time we’ve kept each other laughing and have been each others peace, but I think that now that things are slowing down and “better”, we’re seeing delayed effects of everything we actually went though. And honestly it’s not like it’s over yet- he’s barely getting a port tomorrow, it’s still early on. We’re trying to remind ourselves what a life lesson this was on the importance of maintaining health, but I think just after running on survival mode for so long, it feels like we’re both running on fumes at this point and slumping. It feels like we’re still stuck in a time bubble of those weeks he was in the hospital and shortly after.

I’m wondering- does anybody have a similar experience, or a way to cope with it? Any advice is appreciated. Thank you all


r/lymphoma • • 2d ago

General Discussion Life after lymphoma

20 Upvotes

hi all
I’m 26f got diagnosed with stage 4 Hodgkin lymphoma last Oct. went through 8 months of chemo and found out I was in remission in June. I did Nivo + avd

I’m just curious, how does one get back to life after going through this?
I know I should be grateful I’m alive I know I got a second chance and I am grateful but part of me still can’t believe I went through that
I feel like I’m numb and just looking for any advice

TIA