Hey Lymphomies ,

I'm 21M , and I was diagnosed with Stage IIA Classic Hodgkin's Lymphoma (Nodular Sclerosis). Safe to say, cancer was not on my 2026 to do list hehe.

I've just completed my 2nd cycle of Nivolumab + AVD, and now I'm in that weird waiting phase before my next PET-CT scan. It's basically the world's most stressful loading screen.

Chemo has been doing its thing, but my stomach clearly didn't get the memo Indigestion, acid reflux, and random stomach issues have turned eating into a daily side quest. Plus the GCSF injection those 3 days feels like shit muscle cramps and headaches. 😭

To every fellow lymphomie: if today feels hard, you're not alone. We didn't choose this journey, but we're choosing to keep showing up.

Love you all. 🫶🏾

I had my CT scan after 4 rounds of RCHOP, still have two rounds to do.

I don’t understand the results posted but I have not spoken to my Oncology Dr

EXAM: CT CHEST ABDOMEN AND PELVIS WITH CONTRAST INDICATION: follicular lymphoma - eval tx response Grade 2 follicular lymphoma of lymph nodes of axilla (HCC) TECHNIQUE: Low dose, multi-channel computerized tomography of the chest, abdomen and pelvis was performed with IV contrast. Multiplanar reformats were reviewed. COMPARISON: CT chest abdomen pelvis 05/11/2026, 03/24/2026 FINDINGS: LOWER NECK AND AXILLA: There is a postprocedural clip in the left axilla. Right axillary lymph nodes measure up to 1 cm short axis, previously 1.2 cm short axis (05/11/2026). Right axilla has greater number and size of lymph nodes compared to the contralateral left side. The largest left axillary lymph node measures 1.2 cm short axis (similar to 05/11/2026). However, there is interval decrease in size of the smaller left axillary lymph nodes compared to 05/11/2026. HEART AND VESSELS: There is normal heart size. Negative for pericardial effusion. There is normal caliber of the aorta. There is a right-sided chest port with tip terminating in the cavoatrial junction. MEDIASTINUM AND HILA: Negative for lymphadenopathy. There are hilar calcified lymph nodes consistent with old benign granulomatous disease. LUNG AND AIRWAYS: The trachea and central airways are aerated. There is a 2 mm posterior right upper lobe nodule (series 601, image 34), unchanged compared to 03/24/2026. There are few chronic benign calcified granulomas in the lungs. PLEURA: Negative for pleural effusion or pneumothorax. ESOPHAGUS: Unremarkable. THORACIC BONES AND CHEST WALL: Negative for acute fracture or concerning bone lesions. There are multilevel bridging endplate osteophytes in the spine consistent with diffuse idiopathic skeletal hyperostosis (DISH). HEPATOBILIARY: There is normal size and contour of the liver. Negative for abnormal biliary dilatation. Negative for abnormal radiodense gallstones, gallbladder wall thickening, or pericholecystic inflammatory fluid. PANCREAS: There is normal morphology of the pancreas without acute peri-pancreatic inflammatory changes. SPLEEN: There are benign calcified splenic granulomas. ADRENAL, KIDNEY AND URETER: There is normal morphology of the adrenal glands. There are bilateral ureteral stents. There is mild dilatation of the bilateral renal pelvises. There are subtle urothelial enhancement/wall thickening of the renal pelvises and ureters. There is slightly decreased soft tissue scarring/stranding surrounding the ureters compared to 05/11/2026. BLADDER AND GENITAL: The bladder contains small volume of fluid. There is mild eccentric wall thickening of the right lateral wall of the bladder, measuring up to 0.7 cm thickness, previously 1.1 cm thickness (05/11/2026.) prostate gland appears within normal limits. GI: The stomach contains small volume of ingested material. Negative for abnormal bowel dilatation or obstruction. Negative for abnormal wall thickening or inflammatory changes of bowel. There is colonic diverticulosis without evidence of acute diverticulitis. VASCULAR: Negative for aortic aneurysm. There is aortoiliac and femoral calcified atheromatous disease. LYMPH NODES: There is overall decreased confluent retroperitoneal lymphadenopathy, which appears less dense and slightly smaller in size compared to 05/11/2026. Representative examples include a 1.2 cm short axis left periaortic retroperitoneal lymph node (series 605, image 70), previously 1.6 cm short axis (05/11/2026. Iliac chain lymph nodes measure up to 1 cm short axis, previously measuring up to 1.3 cm (05/11/2026.). The fat planes between the lymph nodes and adjacent bowel/muscle structures appear more apparent compared to prior 05/11/2026. There is subtle haziness/fat stranding in the central mesentery which is also slightly decreased compared to 05/11/2026. PERITONEUM:There is decreased presacral posterior pelvic fluid and scarring, now spanning 2.5 cm anterior-posterior thickness, previously 3.4 cm (05/01/2026. Negative for intra-abdominal free air. BONE, SOFT TISSUE AND ABDOMINAL WALL: Subtle nonspecific sclerosis at S1 is similar to 05/11/2026, but new compared to 03/23/2026, possibly sequelae of a stress/insufficiency fracture or posttreatment related osteitis. IMPRESSION: CT chest. 1. Slightly decreased size of axillary lymph nodes compared to 05/11/2026. CT abdomen pelvis. 1. Decreased size and density of retroperitoneal and iliac chain lymph nodes compared to 05/11/2026. 2. Decreased presacral pelvic fluid and scarring. 3. Decreased eccentric wall thickening of the right lateral bladder wall. 4. Bilateral ureteral stents. Remnant mild dilatation of the bilateral renal pelvises. Persistent remnant subtle urothelial enhancement/wall thickening of the renal pelvises and ureters, suspected to be related to posttreatment related changes. However, can consider correlation with urinalysis to exclude infection. 5. Sclerosis at S1 may be sequelae of nondisplaced stress/insufficiency fracture or posttreatment-related osteitis.

Just wanted to share a small win with people who understand: I finally got out of my apartment and went for a walk outside today! For 30 minutes! In the sunshine! (31f, PMBCL halfway through 6 rounds of DA-EPOCH-R)

As someone who used to be more active it sounds small, but it's been a goal of mine since I started treatment for PMBCL in late May. In the lead-up to being diagnosed, physical activity had become so difficult as the tumor started pressing on major vessels. (I thought I was just out of shape). I've become really deconditioned as a result. I've also had a lot of weakness and fatigue from chemo that makes it feel like I'm walking through jello. The walk was tough, but I'm really proud of myself today.

If anyone else has something they did that they're proud of, a win to celebrate, or even a goal you hope to achieve, I'd love to hear!

Hi team - curious if anyone got 2 rounds of rituxan after pola-rchp. Why or why not?

My fiance who has DLBCL noticed he had two appointments scheduled for rituxan after his 6th pola-rchp. He asked his doctor why he had those appointments as we didn’t know this was a possibility. She said we can discuss pros/cons next week. His interim is next week as well.

Hi all,

I finished chemo / immuno for NHL (G-CHOP) nearly 7 months ago. For the last 3 months or so, I wake up with terrible foot pain, and now I'm having bad pain in my toes and fingers as well. It's worst in the mornings when I first wake up, or after I stand from sitting, and it only hurts when I'm trying to bend the fingers / toes or putting pressure on the feet...I'm assuming this is some kind of inflammatory arthritis thing. I mentioned it to the PA at my last onco check up but she didn't really have anything to say, said it wouldn't be related to chemo this far out, etc. The chemo also put me into menopause and I read that can cause joint issues. Just wondering if anyone with these issues got to the bottom of them, if they cleared up, etc. Thanks!

Hello everyone! I just graduated college in June, but I was diagnosed on May 21. It has been somewhat of a whirlwind since, as this would be a transitory period even without the diagnosis. I made a post here around that time.

I had severe nausea and some vomiting the day of my first infusion, I was fine all during the infusion but the rest of the day was just horrible. Thursday wasn't great, but Friday I only took a few nausea meds and by Saturday I was pretty much well again. Any tips for fighting nausea?

Also, I am planning to preemptively cut my shoulder blade length hair on Friday. Is this a good decision? Should I wait until I actually start losing it? I am worried about feeling poorly of myself with such a sudden change that probably will not suit me as much as my current hair does.

Finally, I am trying to do my best to keep my body healthy during this time. I am meeting with an oncology dietician tomorrow, but does anyone have any diet information? My aunt is a dietician as well and she sent me info about an anti-inflammatory diet. Also, what are some ways that I can stay physically active? I'm definitely not in shape, but I want to keep myself as motile as I can, even during this time. I am lucky to live near the ocean, so maybe I will swim or boogieboard a few times a week after my port heals up.

If anyone has any advice or kind words to share, I would love to hear it. The road ahead feels long, but I am grateful to have immense support from friends and family.

Have a beautiful day!

Might be a long shot, but I’m looking to connect with other caregivers in Pittsburgh that are going through a similar experience. I’m 36 F, my husband is going through RCHOP now. Just got married recently. Honestly even a cup of coffee out with someone going through something similar would be a game-changer. It’s just not the same to vent with friends/family who aren’t going through it directly. My closest friends also live out of state. I’ve connected with local non-profits in the area, but haven’t had luck on this piece. Thanks for reading ❤️

Hi everyone,
I was recently diagnosed with primary mediastinal B-cell lymphoma (PMBCL) and just finished my first cycle of DA-EPOCH-R.
Before treatment, I had pretty significant facial swelling from the mediastinal mass pressing on my veins. After chemo, the swelling improved, but today my face looks noticeably more swollen again, even though my recent PET/CT showed the mass has already started shrinking.
I’m wondering if anyone else experienced facial swelling that came and went during treatment. Did your swelling fluctuate from day to day before it gradually got better? If so, how long did it take before the swelling consistently improved?
I’d really appreciate hearing about your experiences. Thank you!

I was diagnosed with PMBCL in May last year and finished treatment in September (DS1, crossing fingers for that 1 year anniversary). Since then, I have developed a much deeper interest in the disease and was genuinely surprised to find that pmbcl.com was still available.

I have spent a lot of time in this subreddit looking for information, support, and reassurance, both during treatment and afterwards. I am very grateful for the resources, experiences, and help people have shared here. This community made a real difference for me during a difficult time.

That led me to start building pmbcl.com as a nonprofit resource for people affected by PMBCL.

The site is still very much a work in progress. There are probably errors, missing information, and parts that need improvement. That is why I am sharing it here. I would really appreciate feedback from this community on what should be corrected, added, explained better, or removed.

To address the obvious question, yes, AI has been used as part of the development process. However, the motivation behind the project is personal. I kept thinking that a dedicated resource like this should exist, and I hope it can eventually help people who are newly diagnosed or simply looking for reliable and understandable information about PMBCL.

I would also love to hear from anyone working professionally with PMBCL, whether in medicine, research, nursing, patient support, or a related field. I would be very interested in discussing how the website could become useful not only for patients and their families, but also for people working on the disease. This could include educational resources, curated research, patient perspectives, or tools that connect the different groups involved.

Also if you are a developer and have ideas or want to collaborate please feel free to message me as well.

Website: www.pmbcl.com

I was diagnosed with Stage IV classical Hodgkin lymphoma. I completed 6 cycles of ABVD chemotherapy in September. My PET scan after treatment was very encouraging—it showed a complete metabolicresponse. The masses in my chest and under my arm had completely disappeared.
However, on a PET scan in April, a new finding appeared in the same area of my chest, with a Deauville score (DS) of 9. Two months later, I had another PET scan, and this time the Deauville score was 7. The lesion hadalso increased in size by 0.02 mm. My doctors have recommended a biopsy, and I'm scheduled to have itnext week.
Has anyone experienced a similar situation? Do you think this could be a relapse? And there is nothing wrong with my blood its all clear

My wife had a rocky start to chemo (turns out she was weirdly allergic to bactrim - drug-induced meningitis of all things) for Stage 2 bulky cHL but we got the call this afternoon from her hematologist - "Probable complete metabolic response" after the first interim PET scan.

The "probable" is some uptake around the nose / cheek / neck etc she's been a bit sniffly / congested the last 4-5 days. But the original neck nodes and bulky mass have gone quiet. This has been rough on us as it's her second rodeo after her breast cancer 4 years ago.

Many tears. Still a long way to go. Hope though for a future that's cancer free. Again.

Diagnosed with cHL and I recieved Nivo-AVD on 7/6 and 7/21. The picture speaks volumes to how I was being affected by chronic fatigue and the mediastinal mass pressing on my organs, and how those are slowly being diminished. I thought it was interesting so I wanted to share. Has anyone else experienced something similar?

I was diagnosed with NHL back in March and did my 4th round of RCHOP almost two weeks ago and now doing a CT scan and EKG this a.m and meet with my Oncology Dr next Monday to discuss my scan results.

Still have 2 rounds of RCHOP to go and then likely a PET scan.

ill be honest, im nervous as hell and constanly worry so looking for prayers that I make it thru this.

Have a blessd day 🙏

Hi, I’m 18 and I was recently diagnosed with Hodgkin lymphoma. I’m being treated under the EuroNet-PHL-C2 protocol.
Before starting chemotherapy, I gave one semen sample for freezing, but the results were not very good:
Volume: 1.7 ml
Concentration: 16 million/ml
Total sperm count: 27.2 million
Total motility: 50%
Strong progressive motility: 15%
Normal morphology: 1%
Leukocytes: 0
Conclusion: oligoasthenoteratozoospermia
The report recommended ICSI
The fertility clinic asked me to provide another sample, but I have already completed the first five days of chemotherapy and I am now on day 6, taking tablets at home.
Would it still be worth giving and freezing another sample after chemotherapy has already started? Could sperm collected now have increased DNA damage, even if the count and motility are still usable?
I already have one pre-chemo sample frozen, but I’m worried it may not be enough for having biological children in the future.
I’m also wondering whether there is still a good chance that my sperm count, motility and morphology could recover after treatment, and whether natural conception might still be possible later in life.
Has anyone here banked sperm after the first chemotherapy cycle, especially on EuroNet-PHL-C2, OEPA, COPDAC or a similar Hodgkin lymphoma protocol? I would especially appreciate hearing from anyone who later had sperm recovery or conceived naturally.
I will also ask my oncologist and fertility clinic before doing anything, but I would appreciate hearing about other people’s experiences.

I was diagnosed with non-Hodgkin follicular lymphoma stage 2 grade 2 back in 2017… Started RCHOP in May 2017 and was done with 6 rounds before September 2017… followed by two years of 12 Rituximab/Rituxin maintenance infusions for 2 years period… So far God willing all’s good….

Sometimes fear sets in and scares the living sh*t out of me… 40+ year old male, train, gym, protein, supplements, workouts…

Sometimes fear sets in and terrorizes my mind.. what if it returned? What are the survivor stats? Chances? Averages? I read somewhere that the best expectation post chemo treatment is 25 years. Is this realistic?

Still fear sets in at times and then the feeling of complete hopelessness settles in because you feel you just can’t stop it if it happens again… there is no running away or hiding…

It was a rough but manageable ride.

For me the hardest part was my OCD and health anxiety personally as mental health is difficult.

If you have any questions, lmk!

38F USA. I cannot find a single other person who has been diagnosed with this, I understand it is very rare to occur primary to the bladder. I am Stage 1, discovered incidentally during investigation for UTI symptoms (confirmed positive for UTI).

I am being offered radiation 24 Gys with curative intent (this isn’t straightforward as I would have to also have uterine transposition to preserve fertility) or Rituximab therapy, with continued surveillance, possibly radiation further down the line if recurrence occurs (my dr put it at around 50% chance of recurrence at some point).

Hi everyone, yesterday my mom finally received some results from a skin biopsy, for some background information she is 48 and relatively healthy besides diabetes that she was born with. She noticed the lump not too long ago, probably in the beginning of the year, and eventually brought it up to the doctor, so moving forward, she had this biopsy done about 4 weeks ago, the results came back as "indolant follicular lymphoma", the report also said something about it being grade 3A, im honestly still shocked and extremely upset at the news and just dont know what to expect, im beyond terrified, ive done as much reading as I can with it, but somehow I still dont understand, im really hoping anyone with some experience with this specific lymphoma can hopefully share..we are still waiting for her doctors appointment to set up some treatment plans, but im really scared, im currently in school for early childhood education, and im beyond terrified im going to bring home a sickness while she is being treated 🥹❤️ any advice will help please, what should I be expecting, anything

For some context: I am a high school teacher in my late 30s and generally fit and healthy prior to my diagnosis. I was diagnosed with Burkitt Lymphoma in February and immediately started an aggressive inpatient chemo regimen called hyper-CVAD. It is 8 rounds that each consist of a week in the hospital and several weeks out for recovery. I have completed 6/8 treatments, and each round have been readmitted to the hospital for neutropenic fevers and delayed immune (blood count) rebound. I have been on disability since February, and have lost a lot of strength and stamina since this process began.

Here’s my question: what is a reasonable timeline for me to expect to return to work after I have completed my treatment? As a teacher, I will have missed the first half of the semester with students. I generally need a minimum of 3 weeks to recover ANY sustained mobility. I am concerned about trying to return to a new classroom mid-semester with low immunity and strength/stamina. I am considering asking for the duration of the fall semester to recover, then starting in the spring with my work. However, I wanted to hear what other people’s experiences with recovery were like.

I got accepted to a trial of the new mtDNA test which basically genome sequences your cancer and tests your blood for floating cancer cells. I got my first result back and it was negative, which is good but the doctors seems don't seem very sold on the results one way or the other. What are other people's experiences with it?

Hi, I am on my second treatment day and my neutrophil count has not recovered at all. Anyone else have low counts the entire time?

It’s true. After going through six infusions of Pola-R-CHP, I finally had a grilled cheese sandwich that tasted like a grilled cheese sandwich. I loved it. As my children would have asked, “Do you want to be married to it?” “Yes, yes I do.”

What’s next? Mac ‘n’ Cheese?

After Chemo, did anyone else have a food that tasted like old times and so terrific?

I’ve never shared my diagnosis, treatment or recovery journey. I was so lucky to have a wonderful team of support around me. Here’s a quick summary, in case it might be helpful or resonate with someone else. Back in July 2022, I started feeling nauseous, had diarrhea, was throwing up and generally felt unwell. I thought it was just food poisoning and it went away in a few days. But then, a week later, I felt like I had a hernia, which made sense since I was training for the world championships (I was 51 at the time). I asked my wife to take me to the emergency room so I could get some imaging done.

So, the long and short of it is that I was diagnosed with a 11cm tumour in my large intestine while I was in the emergency room. It was definitely my worst nightmare. Things moved quickly. I needed a right hemicolectomy, and the tests on the tumour showed I had stage IV Burkitt’s Lymphoma. I went through months of M-CODOX IVAC-R, which had all the usual (and not-so-usual) side effects, but thankfully, I was in good shape and could handle the full treatment.

I’m happy to say I’ve just celebrated three years of remission. It’s been quite a journey, as many of you know.

I was fortunate enough to connect with other Burkitt’s patients while I was undergoing treatment, which was great for asking questions and having someone who understood. If anyone here is in a similar situation, I’d be happy to lend a hand in any way I can. It really helped me.

Here’s to all you brave people and caregivers. ✊🏼❤️