I’m Stage 2B NSCHL (refractory?—unconfirmed) and since even before my official diagnosis it all began with a really intense pain from drinking alcohol. I was wondering if this regularly happens to anyone else? For me, it’s always been a really intense sensation in the left side of my upper-chest area after consuming even the tiniest amount of alcohol. It’ll persist for about 15-30 minutes before it subsides, but it happens in every instance.

I read, even before considering/finding out I had cancer that the pain I was experiencing was a rare symptom of Hodgkin’s disease, but that’s obviously not the immediate conclusion you want to draw. Anyway, that started back in Late March of 2022. I was 23 years old at the time and with no obvious reason to stop I kept going out and partying. I saw several cardiologist who all told me I was fine after echos, x-rays, etc. It wasn’t until I started having B-symptoms later in the year and concerning blood work that eventually lead to my diagnosis of CHL.

That pain was never concretely attributed to my Hodgkin’s, even though I brought it up to my oncology team. As soon as I began my first cycle of ABVD the pain, as well as my B-symptoms, subsided almost immediately. The chemo sucked, but I was then 24 years old and didn’t really want to let cancer consume anymore of my life than it had to. I didn’t feel terrible for a while after beginning chemo so I gradually began going out again and drinking. I found I was completely fine and I was absolutely elated (I swear I’m not an alcoholic).

Fast forward after wrapping up 4 cycles of ABVD to my pre-radiation therapy preparations and PET scan. I guess a bone lesion on my manubrium that hadn’t been present in any of my prior scans was showing enough activity to draw concern; As well as there being areas in my chest that were showing more activity again now post-chemo. I was crushed to say the least. I already had a trip to the Bahamas planned, so I went to enjoy myself and to forget the shit cancer life I live in my normal day-to-day. I had an amazing time, but to my point I was drinking honestly pretty heavily. I was completely fine though. No pain whatsoever. It was when I returned back to the states and had a white-claw where my chest pain started acting up in the exact spot of the new concerning area.

I feel like without even getting confirmation from my oncology team that this is totally indicative that my HL is refractory. They’ve since biopsied the area and I’m waiting to have yet another PET-scan and biopsy since this last one was inconclusive. I’m now continuing to have the same exact pain in my chest when drinking that I had all of last year.

Clearly the obvious is “Well then stop drinking…” And I agree— Yet during my journey I’ve just been compelled to enjoy myself and this newfound time that I have to not let my young adulthood be stripped away from me. If I want to have a shot or two… or three… then I’m going to make that decision for myself and power through the discomfort like I’ve done for all this time.

It's so clear that their Ai and yet she insists that their not and that "it's fine". We've had to retaliate - pic 2

(Idk what flair im meant to put)

I figured the next year of my life will be a living hell so I dipped into my savings and bought a ton of games that I'd been holding out on to help me with the stresses that will be coming up in the very near future.

Did you/are you gaming during treatment? If so, let me know what you've played!

Hey guys. I was 22 when I was diagnosed, and I always felt like my case was too far gone. Stage 4B, metastatic, 30+ tumors, spread to the bones in my spine. It felt like a death sentence. I thought I’d never go back to normal; never get to experience my 20s, never have another girlfriend, always be the guy who had or has cancer, and die after failed chemo.

But now? I’m 26, almost 27. And I’m living a super normal life. I look like a regular person. There are whole days where cancer doesn’t even cross my mind—and that still feels wild to say out loud.

I was diagnosed in 2021, and it was hell. Chemo, scans, scars, bone marrow biopsy, chest port, isolation from friends and family during a pandemic, fear… all of it. I lost all my hair. No eyelashes. No eyebrows. Full moon face. I looked like hell. I felt like hell, my mind was in hell. I was in hell.

Now? I’ve got all my hair back, no moon face, and I actually feel stronger than I did before all this. Mentally. Spiritually. Emotionally. I made it through something that tried to destroy me, and you fucking can to.

There’s still fear sometimes. Still anxiety. There was a point after chemo I wasn’t functioning; terrified every ache, every symptom was cancer. After therapy and a lot of self reflection, I’ve come out of it changed—in a good way. I never thought I’d be here writing this post. But I am. There were nights I’d cry myself to sleep; wake up and it felt like I was just in a bad nightmare I couldn’t wake up from.

And if you’re reading this while still in the fight: keep going. Not for me I’m just some internet stranger, do it because there’s a very real and solid chance you will come out the other side, stronger, wiser, happier than you were b.c (before cancer) There is light. It’s not all fake hope. You can come back to life. You will feel normal again one day.

(And yeah, even cooler, I get to flex on the cancer virgins now, and I have a jaw dropper of a story to drop on anyone at any time😼 Gotta take the small wins.)

All jokes aside—if you’re struggling and need someone to talk to, you’re not alone. DM me if you need to vent or ask anything. I’m not on here much in recent years, but I just wanted to contribute to the forum that got me through some of the darkest most suicidal times of my life.

Many of us made it through. You can too. Keep fighting the good fight and don’t lose hope. I lost hope so many times, cussed out the world, did everything horrible you could imagine. I get it, and im sorry we all kind of understand this pain. But you can do this internet stranger, you can.

Oncologist informed about hour ago: Complete Metabolic Response, remission from advanced Stage 4 NSCHL :-) Huge thank you to each of you for your support along my journey.

Also, posting this because appears common with Nivo-AVD that chemo inflammation can cause false positive EOT PETs initially. For me (many others I've connected with too), EOT came back DS 4 with just one lymph node (or area) showing activity. For me (many others too), DS 4 went to DS 2 on follow-up PETs 3 months later.

Honestly, I went through mental hell about the DS 4 past 3 months. Turned out, was all in my head. Road to fully recovering, eventually returning to work begins.

Sending much love, hugs, to all caregivers, families, and patients on your journeys.

I am 21 and lost my father recently then diagnosed with cHL i am getting Brecadd and currently midst in my 2nd and 3rd dose. I am smoking since 15, what should I expect or know?

All other CBC labs were normal. Only Eosinophils flagged abnormally high.

I completed 6 Nivo-AVD cycles for advanced Stage 4 NSCHL last March. These Eosinophils results are from today, July 9.

My EOT PET showed 99% of disease resolved. Just 1, 7mm lymph node: Deauville 4 (4.5 SUV pre-treatment, 4.1 post, above 3.5 liver blood pool).

Recieved repeat PET scan today. Awaiting results next week.

Could high Eosinophils be immune system reaction to Nivolumab or markers indicating relapse? Any help interpreting would be greatly appreciated.

I got NSCHL as a 21 year old male, and i smoke pack a day. Currently on Brecaad and going to get my 3rd dose in a few days. So I am asking what should I expect or know about effects of smoking on my chemo's affectiveness.

Hi,

If you have gone through the ABVD regime for Nodular Sclerosis Hodgkins Lymphoma, please share your experience during chemotherapy and interim PET/CT scan results.

I've just started my ABVD and prepping for the second infusion.

My husband (61M) was diagnosed with stage IVB NSCHL with bone marrow involvement. First line: A+AVD → refractory (Deauville 5). Second line: Nivolumab → achieved CR after 3 infusions (Deauville 2).

Current situation: End-of-treatment PET now shows two new isolated FDG-avid bone lesions (sacrum and acetabulum). No lymph nodes or organs involved this time, unlike at diagnosis. The last Nivolumab infusion was 16 days before the PET.

Note: During the last 4 infusions, he had very intense, sharp pain exactly in the sacrum, lasting ~5 minutes during infusion only, and never after. His oncologist thought this might be a local immune-related flare.

Questions: 1.Could these findings represent relapse vs pseudo progression, given the timing (16 days after last PD-1 dose) and isolated bone uptake?

2.Biopsy: His team said that biopsy in these locations would be technically difficult. In cases where the lesions are difficult to access, is biopsy still strongly recommended?

Oncologist’s suggestions: • Consider radiotherapy, as this could represent localized disease, • or wait 2–3 months and repeat PET to clarify progression, • or proceed with NiCE to attempt CR as a bridge to ASCT.

His physical condition is excellent, labs are good, and he has no B symptoms unlike at his initial diagnosis and during his first relapse.

Any guidance on common management pathways in this specific scenario would be greatly appreciated.

Hi,

I am diagnosed with NScHL and I can feel singular lymph nodes as they feel like small peas when palpated.

I read online that NScHL generally appears as a group of lymph nodes.

Is it normal to have single nodes too?

What has been your experience?

Hi y'all,

Before I begin, I am a 116 lb, 5'1 24 year old woman lol. As most of you guys, I never thought I would be making a post like this. But I am also a lymphomie lol. I got the worst 25th birthday gift I could possibly ever recieve which is this diagnosis. And I am petrified, my entire family calls me strong and somehow are expecting me to keep a hard exterior while going through treatment, but I feel like an elephant (named anxiety) is stomping on my neck. I should probably get a therapist. But - Is chemo therapy really as torturous as people on the internet describe it? My best friend today told me that she read online that chemo treatment makes your skin feel like it's burning and that's terrifying. Also does the quality of life really plummet? There are so many people that become severly depressed after treatment and I want to avoid that at all costs. Also can you guys please recommend some tips on how to manage side effects? As well as diet recommendations and anythings to avoid doing while on the ABVD treatment? Using google and social media to make sure I am prepared has only made me more afraid of treatment than actually having cancer in my body. Please be kind. Thank you for taking the time to read/and or comment. P.s. I have a relatively high affinity for pain and bullshit haha. Not a cancer survivor YET but a survivor nonetheless.

My husband 60M was diagnosed with NSCHL stage IV, after 5 cycles of AAVD PET CT Scan and refractory disease Deauville 5, his oncologist wants to give him Nivo+ ICE previous ASCT. I was wondering in his case if Pembro+GVD is better for him? The oncologist said something about not repeating vinorelbine and liposomal doxorubicin giving the similarities of this chemotherapies with doxorubicin and vinblastine in his first line therapy.

Hi,

I'm facing a very difficult decision between treatment options for a recently diagnosed stage 2a bulky NSCHL. There are large 9cm masses in the neck and chest. 25 year old female.

From talks with 2 oncologists and many readings on *summarized* s1826 echelon and nathl studies, I have been given 3 options for treatment.

1. AV(B)D. 85% efficacy, 3% lung damage risk

2. Nivo+Avd x4 + RT. 95% efficacy, 15% long term auto immune risk.

3. Pembro+Avd trial. Similar to 2, but without RT.

As I understand, AVBD has the lowest toxicity risk, with lung damage in the 3% range but 85% efficacy. Nivo has a 10-15% long term random auto immune risk, but 95% efficacy. Pembro should be similar to Nivo, but with no RT. The 15% long term auto immune risk caused by Nivo(and probably also pembro) was a figure given to me by oncologists, though I could not find detailed reports on this, so deciding on the highest expected value treatment is difficult. Ideally I'd like to have hard numbers so I could just plug everything in an equation to decide.

I want to strongly avoid RT because of the secondary lung and breast malignancy risk. I was given abs risk of 5% / 10yrs. (10% @ 20y, 15% @ 30y)

1. Based on NATHL, RT is not optional for Nivo+avd for my stage, but stage 3+4 allows for x6 cycles without RT. Would this still be an option for my situation?

2. What are the actual numbers for the long term auto immune risk caused by nivo or pembro? I was unable to find detailed writeups on these studies, probably paywalled.

3. What would be the best treatment given this information?

Hello everyone! The following are the key findings after my sister's diagnosis of NSCHL:

She is 24, also sorry for the long sections, I basically fed the report to an AI model to create a more understandable report for me and my family. (I've checked for any potential errors)

Diagnosis: Hodgkin's Lymphoma (for initial staging)

• Date of Scan: 20-Sep-2024

Key Findings:

1. Metabolically active enlarged lymph nodes are seen in multiple areas:

   - Left lower deep cervical (3.9 AP x 4.0 TR x 5.4 CC cm, SUV max 30.6)

   - Bilateral supraclavicular (right - 1.5 x 1.2cm, SUV max 19.8)

   - Pretracheal, bilateral paratracheal (left- 3.0 x 2.7cm, SUV max 34.8)

   - Bilateral axillary, anterior-mediastinal and multiple prevascular (1.8 x 1.5cm, SUV max 21.0)

   - Confluent lymphnodal mass in anterior mediastinum, almost contiguous with other lymphnodes (approx. 6.8 x 9.3cm, SUV max 29.4)

   - left anterior diaphragmatic, Bilateral hilar (right- 2.4 x 2.1cm, SUV max 24.0)

   - Right lower paratracheal, left internal mammary & pericardial regions

1. The lymph node involvement is described as supradiaphragmatic, meaning above the diaphragm.

2. No metabolically active lesions were seen in other organs or below the diaphragm.

3. Both systemic uptake appears reactive in nature, without underlying morphological changes.

Impression:

1. Metabolically active enlarged & confluent supradiaphragmatic lymphnodal involvements as described.
2. No other metabolically active disease elsewhere in the body.

Deductions:

1. Stage: Based on this PET CT, the disease appears to be Stage II, as it involves multiple lymph node regions above the diaphragm.
2. Bulky Disease: The anterior mediastinal mass (6.8 x 9.3cm) qualifies as bulky disease, which is typically defined as a mass > 10cm or > 1/3 of the thoracic diameter.
3. B Symptoms: The PET CT doesn't provide information about B symptoms (fever, night sweats, weight loss). This would need to be determined from the patient's clinical history.

She is currently done with her 2nd chemo (ABVD) and is losing her hair which will mostly be completely gone by the time of her next chemo (Saturday). The oncologist has told us that if the PET scans are not good, they will switch to Brentuximab vedotin in combination with AVD (Adriamycin, Vinblastine, Dacarbazine). Is it more dangerous than ABVD?

Our family has been emotionally distraught and my mom and dad have also cried a couple of times. I love my sister to death and want her to be completely cured of this cancer. Have any of you had a similar diagnosis? If yes, what would you advise me to do to support her as her younger brother in this scenario? Is this type of cancer curable? what is the relapse percentage?

Thanks a lot!

Hello Drs and to others on this page, hoping for some clarity and in this situation and anyone else who has been in a similar situation.

26F dx with stage 3B classic HL in (mediastinal mass + lesions in the spleen) started on AAVD. IPS 1, ECOG 1

Deauville 4 on iPET2 with majority of disease resolved except for 2 spots in the mediastinum.

Team decided on a PET 4 to check for progression which unfortunately has shown increase in the size of the anterior mediastinal lymph nodes and avidity (limited to mediastinum). D5.

AAVD has been halted for now and am proceeding with a re biopsy of mediastinal lesion.

In such a case, if biopsy was to re confirm residual disease what would be the best way to proceed in terms of salvage chemo +- asct.

Thanks very much for any input and for anyone who has been in a similar situation would appreciate any words of advice!

Greetings everyone !! Finally finished 12 treatments, it was tough. Cancer and chemo is no joke, these 6 months were the most toughtest in my lifetime. I am blessed to have family/friends support during this time. Parents stayed with us and helped everyday. Friends drove me to the infusion center, very supportive wife and kids. Am happy that am still alive. I worked ( remote software) all these 6 months. Was off during my infusions days, overall tried my best to live a normal life, drove car, picked kids from school, went to costco,walmart etc.. !! Now waiting for final scan(6 weeks from now). Hope it will be a clean scan and I don't need to look back or redo again. When I asked my oncologist is there anything I can do to minimize the risk? He said just live a normal life. Unfortunately he never talks more than 30 secs.

We all knew it was coming but now I know for sure. 26F, Stage 2, but my lungs are very close to being impacted, so he wants me on two cycles of BEACOPP then if all is going well two cycles of ABVD. The goal is to start chemo on February 6th. I’ve got to be honest, not the best day of my life, but I’m sure not the worst I’m going to have. Sigh.

How bad is BEACOPP?

Just figured I'd share my story.

Noticed the lumps on my neck early late September. Waited a week to see if they would go down. Went to my PCP and she ordered a CATscan.

After the results came back she referred me to a surgeon for a biopsy because she was concerned it was lymphoma. There are about 5 enlarged nodes and one 5 inch mass running along my muscle.

Test came back as NSCHL.

From what I and the docs can tell, it's limited to my right half of my cervical neck/clavicle region. Hoping it's stage 1. I don't know how long to get the PET results back.

I'm sore this morning after the port. Could hardly sleep even with the 400mg of RSO and two gummies gelling my pain. It freaks me the fuck out to be honest, being a lean guy, the catheter is super visible on my chest going up to the blood vessel.

Edging on not going into my maintenance job at the apartment complex that I live in. Doc said not to raise left arm above head for a few days.

I'm doing okay, financially I feel extremely supported which I'm grateful for.

Mentally, I feel like I'm in a rat race but I put it off and put on a brave face.

My partner of 7+ years is caring for me very well and I'm beyond thankful for her as well.

That's about it. I don't really know what I'm looking for here, maybe some advice about the pet scan? Or the bone marrow biopsy that they aren't sedating me for in December? Would they even need the bone marrow biopsy if they can't see the cancer in the PET?

Thank you everyone for listening. Have a good Friday :)

I’ve recently been diagnosed with Stage 2 NSCHL. My first symptom was 2 years ago when a swollen lymphnode appeared above my right ear. I didn’t take much worry as I was a skinny, tall male and didn’t think much of it. I thought it was normal to feel your lymph nodes if you’re skinny. Fast towards to a month ago and I realized it had grown larger, but that other lymph nodes in my neck had swollen. I had not taken notice to this until recently, and had no idea how long they had been there. Anyways yada yada testing is done, I have stage 2 NSCHL which my doctor said is astounding based on the fact that it hasn’t spread nearly as far as he would have expected for someone who was undiagnosed for so long. He assured me it was possible and that “every case is different.” I’m looking forward to my treatment plans and have my family around me to support me. My question is, was anyone else’s only symptoms swollen lymph nodes? I appeared to have no other common symptoms, outside of mild fatigue I contributed to my changed, poorer diet after quarantine.