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.

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

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.

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?!

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!

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

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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

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?

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?

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

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.

(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? :(

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! ❤️

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

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!

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 😅

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?

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

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

Hi everyone,
My 9-year-old son was recently diagnosed with stage IIA, non-bulky classical Hodgkin lymphoma. His oncologist is strongly recommending that we consider participating in the Phase 3 COG clinical trial AHOD2131, involving brentuximab vedotin and nivolumab.
I’ve been told these medications have shown very promising results in more advanced Hodgkin lymphoma, and the hope is to achieve equal or better cure rates with fewer long-term side effects.
I’m having a difficult time deciding between the clinical trial and standard chemotherapy, especially because the long-term results of this particular treatment aren’t established yet.
Has anyone here participated in AHOD2131, or received brentuximab and nivolumab?
I’d really appreciate hearing about your experience, side effects, treatment outcomes, and what helped you make your decision.
Thank you!

No real B symptoms when my lymphoma was found due to ongoing hip pain last year. Original node biopsy in Nov. showed some large cells, so it was suggested to get a bone biopsy of my femur where the Dec. PET SUV was 8.9.

Open bone biopsy in Jan was useless as the bone samples were too necrotic. By then B symptoms were present (maybe it was just in my head? ), so oncology started me on BR.

Mid way PET (in May) showed improvement with most nodes back to normal, and some uptake still in my femur. Deauville of 3.

I completed 6 rounds in late July, and had my follow up PET in late Sept. I was disappointed to learn the uptake in my femur hasn't changed since May, and Deauville still at 3.

I'm on watch and wait for another 3 months - if it's transformed they expect to see a higher SUV and Deauville; otherwise maybe it's just the last remnant of my FL doing it's thing.

Anyone else go though anything similar? How did you find out it was transformed?

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! 💪

Title: Stage 2A Hodgkin Lymphoma – Relapse Risk After 4 Cycles of ABVD?

Hello everyone! I'm 19 years old and was recently diagnosed with classical Hodgkin lymphoma.

My diagnosis:

• Subtype: Nodular sclerosis
• Stage: Likely 2A
• Tumor classification: Non-bulky

My oncologist recommended 4 cycles of ABVD (8 infusions) without radiation, mainly because the affected lymph nodes are in my chest.

I'm wondering if anyone here has had a similar diagnosis and treatment plan.

Did you achieve complete remission? Have you experienced a relapse, and if so, how long after treatment?

I'm also curious if anyone knows the estimated relapse rate for patients with a similar diagnosis who receive 4 cycles of ABVD without radiation.

And Finally, after how much time u experienced major hair loss.

I'd really appreciate hearing your experiences. Thank you!