r/hodgkins_lymphoma

Hi everyone! I’m really worried about my port and I guess I want to rant or ask for reassurance/advice? I’m not really sure. I got my port inserted 4 days ago and I’ve been feeling off since then. I had heart palpitations since then so went to the ER 2 days ago. They checked everything with a chest and abdomen X-ray, blood tests, blood gases test, and a EKG. It showed that it was all okay but I still have the palpitations, alongside some tingling across various parts of my body, pain in my back on the side of the port, and occasionally pain in the arm and chest on the port side. I’m trying to keep calm as the ER said it was okay and to keep an eye on bleeding or signs of infection which I don’t have. It’s difficult tho, I’m not sure how to cope and I’m still learning to listen to these new sensations. Idk if I’m just hyper aware/anxious since the diagnosis or if I should be worried. Has anyone had similar experiences

Last week I was diagnosed with stage 2A Classical Hodgkin Lymphoma. Yesterday I had my first of 6 chemotherapy/immunotherapy sessions (N-AVD). Does anyone have any particular advice about dealing with the side effects? I am quite anxious about how my body will react. Right now my mouth feels weird and I feel quite bloated. I know side effects tend to be at the worst after around a week from receiving treatment.

I'm 19 years old and although I'm grateful that it's just a few months of treatment, it still feels insane how my entire life has been flipped upside down so instantly. I'm sure I'll get myself into a routine but so far I really hate all of it. I hate the hospital, I hate the blood tests, I hate having the drugs injected, I've hated having to tell people, I hate the stress of it all.

Hello guys , i just got diagnosed with stage 4 Hodgkin’s lymphoma . Im 21 , soon ill be 22.
My doctor said since the cancer is in stage 4 she will use BEACOPP , ive read about it and my doctor also explained everything, ive heard its toxic and harder than the ABVD treatment, the one thing that scares me is this treatment has a high chance of making its patient infertile, i want kids in the future. Idk what to say im just lost , will u guys tell me ur experiences with this .
I NEED SOME HOPE!!!!

Completed 6 Nivo-AVD cycles for advanced Stage IV NSCHL last March. Started itching, developing rashes again about a month after.

My EOT scan came back Deauville 4 1 month post chemo. I'm worried may've only had partial chemo response and itch is back because lymphoma still present. I'll receive next PET scan results in 3 weeks.

Anyone else experience post chemo itching, rashes and in remission? My husband thinks my itch, rashes are because my anxiety has been debilitating since my EOT scan results.

Hey gang,

I'm a 28M from Canada who found out the day before yesterday that I have classical Hodgkin lymphoma, mixed cellularity subtype, after the surgical pathology report from my core needle biopsy.

I still think I'm in shock because ever since then I've just felt foggy. I'm trying to carry on with my normal day-to-day life as if I don't have cancer, but at the same time I do have cancer, and I genuinely don't know how I'm supposed to react to that.

So far, I've only told my best friend, who lives on the other side of the country. While talking to him about whether or not I should tell my parents, it was the first time I'd shown any real emotion about the whole thing. I'm an immigrant, and my family lives halfway across the world.

Life also has a weird sense of timing. I just accepted a new engineering role that's supposed to start in a couple of weeks, and two days later I found out I have cancer.

I haven't met the oncologist yet, so I have no idea what stage I'm at or what treatment is going to look like. If anyone who's been through this could help clear some of the fog by answering a few questions, I'd really appreciate it.

1. How bad is chemotherapy, realistically? Will I still be able to work while going through treatment? The new role is fully in-person, and I really don't want to fumble this opportunity.
2. Should I tell my parents? They live halfway across the world and realistically can't do much from there. They worry a lot showcased by some health issues I've had in the past, and I can easily picture a situation where I end up spending all my energy reassuring them, or where they spend a ton of money flying here when there isn't really anything they can do.
3. Should I tell other people? I'm handing in my two weeks' notice tomorrow, and all I've been doing is rewatching Hank Green's videos about his experience with Hodgkin lymphoma. It really feels like I'm in for a rough ride. I don't want to become "the cancer guy." I'm also a very avoidant person when it comes to asking for help. I always feel like I'm burdening people, even though I'd drop everything to help someone else without thinking twice.
4. What happens now? I'm just lost. What actually changes? Will I lose all my hair? Will I lose all my muscle? Am I going to be terrible at my job? Honestly, I've felt pretty lonely even before getting this diagnosis, and work had become my escape. Am I cooked, chat?

Thanks for reading. I know a lot of you have been through this already, and I think hearing from people who actually understand what this feels like would help more than anything right now.

Opinion /Feedback-

Hey Gang. I was diagnosed in December 2020 with stage 2 nodular sclerosis classic Hodgkin lymphoma. The lymph nodes were small (4) and non-Bulky in my right groin area. I had no symptoms other than I thought and felt I had a hernia, my blood being out of line on some items and my SUV were all around 4.5.

My bone marrow biopsy was great and all my organs were clear. I did ABVD. I was cancer free after 1.5 months but stayed on AVD until June were I remained cancer free and perfect blood.

The pathology report before all of this was so so. Limited Material Finds… but they still treated me.

3 months after my final chemo, I had fullness in the same area (phantom pains) and got concerned. So they re-scanned me and found one tiny lymph node in my retroperitoneal area.. inflammation? Reactive? My doctor at the time said that my Cancer was aggressive form and that I’ll need to do stem cell transplant. This information rocked my boat so I decided to get a second opinion.. with a true Lymphoma specialist.

My second opinion was more optimistic and just said because it’s so small let’s wait and watch. They did do a biopsy but it was indeterminate.

Well guess what after four years it disappeared!

Now, in January 2026 my insurance changed and I had to find another Doctor :-(. 

The new Dr did a PET to see if I was finally cured but I had 3-4 small lymph nodes in my thoracic area with low SUV. They did an EBUS Biopsy and the pathology came back scant but the new Dr said I was recurrent.

The new Dr wants me to back me in an ASCT but my gut doesn’t want to as I’m closer to 60/70 than 25/35. I’m super healthy 57.

I’m low volume, asymptomatic, blood is perfect, bone marrow and organs all clear. Great energy tons of positives, except I love Pinot Grigio to calm me. No smoking no bad habits. Perfect 173 weight for 20 years. 

They started me on salvage therapy P GV (no D as my echo was borderline). No side effects. 

I’ve done 1.5 cycles and did a PET follow up and everything is resolved except I still have 1 small lymph node. I’ve done another cycle (at 2.5) and I have 1 more cycle of P GV left and will do another PET around mid July. I Will have completed 3.5 cycles, 4  KeyTruda by 7/2.

Since I’m minimal and low volume I’m banking on wait and watch. Push come to shove, I’ll do keep doing KeyTruda as I’ve heard good things, moving forward. I’ll consider ASCT if I go bulky and show symptoms. 

Any feedback/opinions would be appreciated. Focusing on all the Good! God and Jesus are awesome

Thanks, 😊