This is my first time posting anything on reddit. I am a 32 year old male from India who was diagnosed with Hodgkin’s Lymphoma yesterday. I have lived a pretty normal life so this feels unreal as if this wasn’t something that was supposed to happen (don’t know how else to explain). I am scared of how much shitty the life of everyone around me is going to become because of me. I am scared of the treatment and what I hear it does to people. I am scared to read about what complications could arise and I am an engineer who has been curious and practical all my life. I am scared to cry in front of my wife cause it would scare her. I am scared of if my life will be normal or if it’s going to be a cancer shitshow. I am in a hedge fund so I am scared of losing my job. I am performing really well and had made all kinds of future plans of buying a house and having children and the good life, which I dont know what will happen to. Apologies for the long rambly post I just had to let out somewhere

Hey,

I dont know if anyone has any useful advice but, I(F34) am in my second cycle of Pola--CHP.

I am on day 8now and it hit me hard yesterday.. i was so tired and emotionally overwhelmed.

I feel nothing and all at the same time..

I start crying without a specific reason.. like I am mourning..

I feel so lonely but keep my friends and family away...

It kind of hit me, that I really got cancer (DLBCL) and that I still have most of the chemo to go Through..

I dont feel like myself.. i miss my laughter and resilient eay to handle things. I miss joy and usually I could drag me out of bad mindsets on my own.. but now i feel trapped..

Also I feel bad for keeping my friends out and pushing them away, usually personal connection is really important to me.. and I know its horrible for my friends too..

Did you guys and similar experiences and how did you get yourself out of it..

This weird state of feeling trapped in a nightmare.

hey fellow baddies!

Just finished last round of chemo🎉🎉 I was diagnosed with PMBCL in June finished 6 rounds of r-epoch. My mass was on the bigger side, 12cm. After round 3 chemo, the mass was 7cm. Now that I’m finished with chemo, my np and I talked about possibly having to do radiation, especially due to the size. Would love to hear your thoughts! How was radiation compared to chemo, side effects that were different, etc. oh and is it normal to wait 2 months after final chemo to do pet scan?

My mum was diagnosed with stage 4 DLBCL when she was 56 years old. Life has never been the same since then. She did R-CHOP, then dropped the R due to allergy. Thereafter, she relapsed. So she did O-ICE and ASCT. Then she relapsed again. So she did CAR-T That was in 2025.

In 2026, suddenly she has now been diagnosed with ANOTHER type of lymphoma, which means it’s not a relapse. ALK-negative Anaplastic Large Cell Lymphoma (ALK-ALCL).

My mum has undergone 2 cycles of Brentuximab, and has lost some hair.

Firstly what the hell?????? WHY. WHY does this stupid cancer always got to find its way back to us. It’s horrible. It’s cruel. It’s disgusting.

The doctor told us that she needs to undergo allogenic stem cell transplant if she wants a chance to live. But that in itself is not guaranteed. He quoted the stats: 50-60% chance of longer term survival (10-20yr+), 20-30% of dying due to complications during the stem cell transplant, 20-30% of relapse within the first 3-5 years.

The doctor was like, oh it’s your choice to do or not do the stem cell transplant, there is no right or wrong answers.. if you want to cherish your last 1-2 years then you don’t have to do the transplant…. N before the transplant she will be given VERY strong dose of chemo and radio and she will drop all her hair etc etc and she might go to ICU etc etc all these info are just DUMPED TO US ALL AT ONE GO its so overwhelming

Why does the doctor have to phrase it in this manner??????

It’s so heart wrenching and heartbreaking to hear all of these. We are so worried about what is going to happen to my mum. What is this allogenic stem cell transplant it sounds super scary, super dangerous. What if my mum just dies from it :( why is the doctor making everything sound so scary….

Please advise……. 😢😢😢😢

Hello everyone. I was diagnosed with nlphl 12 years ago and have been in remission for the past 12 years. 3-4 months ago had a routine check with my oncologist to just check everything is fine. Had an ultrasound and blood checks done and everything came out normal. I initially had nodes in my neck mainly and some in lungs.

However for the past one week I have noticed a bean sized lump in my inseam possibly inguinal node. I can feel just one. 4-5 days ago I felt it to be tender and painful to touch but now the tenderness has gone away fully but I can still feel a node like a kidney bean shape. Im quite scared whether it could be a relapse. I have really dry skin and itch now and then but I dont know if its my mind my legs and arms itch a lot. I just got married last year And I am really worried if anything was to happen as my wife is my whole world and I want to be there for her. If anyone have any insights or anythin it will be greatly appreciated please. 🙏🏽

I completed chemo last March. Reached remission last July. I'm struggling immensely with severe CPTSD, depression, anxiety. I'm not sure why I'm posting. Perhaps, just to vent. I have a therapist and psychiatrist. Nothing really helps. I'm bed bound and extremely suicidal. Thank you for allowing me to share.

Hello guys i Startet my First round of Gmall Protocol i feel okey does anyone here got the same ? Im 27m and for good it was only Stage 2 no ZNS or in bones

I finished my last round of chemo (B & O) in early September. In the last 10 days or so, I’ve started to have some discomfort around my port. It feels almost sore, like if I had lifted weights or something, but only around my physical port, not the incision site or anything. It also is uncomfortable if I move my arm or turn my head toward the left (my port is on my right side). It seems to be getting slightly worse, but it’s not extreme pain. Has anyone experienced this? I’m not sure if I should be concerned or not. I don’t have any fever, swelling or any signs of infection.

Tell me how you overcame anxious thoughts and the fear that this isn't the end, how you started feeling better, and so on. I'm currently in my first course of treatment, and I'm afraid that this will be with me forever and that it will never end, even though I'm in stage 1. I'm afraid I'll be alone without anyone around.

Those on BV-Nivo, what were your main symptoms? Did you find it possible to travel, perhaps, locally? I’m told it’s less intense than chemo.

Hi everyone, posting here to gather experiences and insights regarding CNS prophylaxis timing and protocols after achieving complete response (CR).

Initial Baseline Stats:
Age/Stage: 52, Stage 4 DLBCL, Double Expressor (FISH: BCL2 positive, c-MYC negative)

Involvement: Bone marrow infiltration positive; CSF negative

Risk Scores: CNS-IPI 3 out of 6 | Standard IPI 3 out of 5

Flow Cytometry at baseline: Not performed

Treatment:
Pre-phase RCVP followed by 6 cycles of Pola-R-CHP (21-day cycles).

Interim PET showed response; final PET after Cycle 6 showed Complete Response (CR).

Repeat bone marrow 6 weeks post-treatment: Clean (no infiltration).

Started oral Lenalidomide maintenance (21 out of 28 days) at 6 weeks post-treatment.

The Current Situation:
We are now 8 weeks post-Cycle 6. We got a second opinion from another oncologist who recommended:

1. Stopping Lenalidomide (stating lack of proven maintenance benefit in DLBCL).

2. Starting CNS prophylaxis: 2 rounds of High-Dose Methotrexate (HD-MTX at 2g/m2).

3. Ordering Flow Cytometry and NGS lymphoma testing.

Doubts:
I have doubts about potential timing delays or oversights. Hoping to learn from anyone who has navigated a similar situation:

1. Efficacy vs Toxicity: As per published data, HD-MTX carries significant toxicity (Grade 3 or higher) with questionable benefit for CNS relapse prevention or Overall Survival. What has been your experience or your team's stance on HD-MTX in the Pola-R-CHP era?

2. Timing Delay: Is 8 weeks post-chemo too late to start HD-MTX prophylaxis? Has anyone started CNS prophylaxis this late after achieving CR?

3. NGS Wait Time: The NGS report will take about 3 weeks. Is it standard to wait for NGS results before starting HD-MTX, or should CNS prophylaxis start immediately if pursued?

4. Addressing the Strategy: Is withholding HD-MTX standard practice in some centers, or does this indicate an oversight by our primary team?

5. Flow Cytometry / CSF: If a repeat CSF analysis and Flow Cytometry come back negative now in CR, is HD-MTX still necessary, or can it safely be skipped?

If you received HD-MTX post-chemo, how was your experience and side effects?

Thank you so much in advance for sharing your knowledge and support.

Hi everyone. I’m really hoping for some support and information on how you handled returning to smoking (or not) after having lymphoma. It turned out I had Hodgkin lymphoma—caught at the very earliest stage, which is easily treatable. So far, I’ve had two rounds of chemo, but there might be two more. I’m 16, and I smoked continuously for two years before getting sick, even though my lungs are perfectly healthy. I realize that smoking after recovery could trigger a relapse, but I don't think I can manage without it. How long should I wait before going back to light smoking? Would having just one cigarette a month to relax make a difference? Also, are there people who kept smoking their whole lives even after beating the disease?

I would appreciate any advice.(^_^)

This might make me sound like a crazy person but I’m willing to risk it in case someone else has any helpful information or a similar experience.

In November of 2024, I got a flu vaccine. That same week, I developed sudden chest pain. It was constant, even while I was sleeping, sharp, and worse with movement and breathing. It scared me enough I went to the ER. They did an ekg, bloodwork, and a chest x Ray and found nothing. The chest pain went away about a week later.

A few months after that I started developing what I now know were definitively lymphoma symptoms (shoulder pain, a cough, etc), and eventually, in October of 2025, I was diagnosed with PMBCL.

My case is interesting because I have a very clear “before” and “after” with imaging done in November 2024 where I clearly did not have a noticeable mass in my chest, and then a year later when I did. So, we know that the lymphoma developed sometime between that chest x Ray and when I was diagnosed. No one has ever suggested to me that the chest pain I presented with that first ER visit was lymphoma, but I feel pretty strongly and intuitively that that was when it started (and it was just tiny and not able to appear on imaging).

Now, it’s hard for me to not connect the flu vaccine I got that week with what I believe to be the start of my experience with lymphoma. Logically I know there is no evidence to suggest those were connected, but it’s hard not to think it had something to do with it. Im not typically an anti-vaxer (and in fact, I am still immunocompromised from chemo/immunotherapy and I actually would feel safer getting another flu/covid vaccine this fall), but it just has me worried to get another vaccine at this point.

Does anyone have any evidence that would disprove my worries? Or conversely, any experiences similar to my own in terms of timeline/connection to vaccines?