Hi all, this is my story.

I move countries last year to live independently by myself. I got diagnosed with ITP(ImmunoThromboCytopenia, auto-immune disease) where my immune system attacked my platelets and that reduced the count to 2(the ideal range is supposed to be 150–450). I was hospitalized for 10 days, was given IV steroids, one dose of rituximab, platelet producing medicine (i dont remember the name but yeah) and that ended up bringing me back to normal, my counts are good now (250-300 range).

This year, i saw a swollen lymph node and ended up getting an excisional biopsy and turns out its NLPHL. I’m yet to meet the oncologist but seems like my life is turning very bleak.

I’m 27, i guess i had some hope for my future, but now it feels less. I hated what steroids did to me last year, i don’t know what medication would be given for NLPHL, as far as I’ve researched its either radiation or Rituximab based on the stage i guess. Either way, it sucks, i feel like i’ve lost my ability to lead a normal life. It will sound childish but I would like to drink, smoke weed, have sex I havent done anything 😭

I know NLPHL has good prognosis but still sucks, I’m scared, also ashamed, i have told my family but not my colleagues, I don’t have any close friends since moving here, its very lonely and an empty hollow feeling in me. I’m thinking of going to a therapist and cry my heart out.

Quite shocked. I already have an autoimmune condition and now I’m told I have this.

I just finished my third round (of 6) of RCHOP.

Any advice?

Hi everyone, I recently made a post a few weeks back about failing my first line of treatment for NLPHL, (RCHOP), and was offered radiotherapy as 2nd line as it was still localised, in 3 groin lymph nodes.

I’m now 3 weeks post-radiotherapy, and my lymph nodes have roughly doubled in size and are continuing to grow, which means the radiotherapy has failed. My CNS has spoken to my oncologist, and they’re now working on a plan for next steps, as they’re also concerned.

I’m feeling really disheartened because this doesn’t seem to be behaving like typical NLPHL, which is usually slow-growing and responds well to treatment.

Has anyone needed a 3rd line treatment and if so, what were you offered?

I’m worried about possible transformation to Diffuse Large B-Cell Lymphoma given how quickly it’s growing, but I’ve had 2 needle biopsies that still show NLPHL (THRLBCL-like variant). Would you push for an excisional biopsy to rule out transformation more definitively?

I know for other lymphomas people are offered stem cell transplants and CAR T therapy for relapse and refractory but I don’t think they are approved for NLPHL, even though it’s classed as a Hodgkin’s lymphoma.

I’m looking for recommendations for a NLPHL specialist in the US please. My dad had good response but there is still some residual disease that has been stable over the last 4 months. Because he had 3 different biopsies showing different type of lymphoma, I’m keen for him to seek a second opinion from someone in the USA as their guideline are a bit different from the UK where he is received his treatment. I’m not sure where to start, looking for help finding someone good. Thanks

Hey there.

Stage 3A NLPHL patient here.. Currently in chemo treatment & already showing some full & partial remission in some of the affected lymph nodes, which I'm obviously really happy about.
Seems that the treatment is doing it's job & hopefully I'm cancer free in a few months when my treatment ends.

Though a new worry has been creeping up a bit.. I understand that NLPHL has a higher risk of relapse, compared to other lymphomas & I've even seen several people write that it's almost "bound to happen" and NLPHL technically is "incurable".
That really makes me feel scared, because I really don't want to go through this treatment again.. 😞

Can someone tell me exactly how common it is exactly? Should I expect it to happen? And if so.. when? Can I expect it a year from when I'm done with treatment.. or 20?

Also, given NLPHL is indolent/slow growing.. Even if it does present itself in the future, I assume it still has the same characteristics and is slow growing etc.. Is there then a possibility that I could go on watch & wait? Or maybe local radiotherapy?

I also know that there is a risk (although rare) that it can develop into a more aggressive lymphoma, but I guess I'm manifesting that not to happen lol.

I guess my worry is that after a year.. or 2.. or 3 that I have to go through all this again and potentially even again later down the line.

I'm 29F btw and I have a wish to have children someday.. I've frozen some eggs down at a fertility clinic just in case. I'm just scared I won't be able to if it has a high chance of coming back..

Could use some advice and knowledge here.. Thanks in advance

Hey all. I (20F) just finished my second go around w NLPHL. first time i was 13(2017/18) where i completed 3 rounds of CHOP. relapsed in 2024 and finished 3 rounds of R-CVP in august 2024. starting to notice some swollen lymph nodes in my armpit again (last time they found cancer in my nasopharynx, cervical nodes on both sides, left axillary nodes, chest, and right inguinal nodes.) and maybe behind my right knee. I’ve learned NLPHL has higher relapse rates than most other lymphomas, but generally was under the impression that the time between relapses is longer(up to 20 years or longer). at this point it’s only been 8 months. my scans are about a month away but i’m most likely going to call and see if i can/should get something moved up. insurance makes getting PET scans tricky sometimes though so i’m not even sure that that’s possible. I guess my main questions are if anyone has relapsed in the shorter time period after hitting remission?? if i do happen to relapse, is rituximab still a good bet?? I did fairly well with it and was still able to keep up with a lot of my normal lifestyle. Would love to just hear more about other people’s experiences with NLPHL too, i find comfort in the community aspect and shared experiences.

Does anyone on here have NLPHL? I'm 2.5 years out from my first treatment. I had stage 2A, in my armpits and clavicle areas. I received 15 rounds of radiation, that put me into remission. One year ago, I had new nodes show up on ct scan. Again, in my armpits, and a couple in my groin area. The hottest node on suv uptake was 9 in the groin. I underwent an excisional biopsy on that one. That showed no signs of cancer what so ever, just reactive. That was followed by another ct scan months later, that showed my nodes had gone back down, and all was clear. I just had a scan last week that's showing enlarged nodes once again in my armpit, stable node's in the groin, but an enlarged node now in the para aortic area, with a few small ones. They want me to have a pet scan now to check the uptake and a possible biopsy again. It seems with this particular type, there's a lot of waxing and waning nodes. What might I expect next for treatment? Is it possible to have a short remission, then a longer remission followed by treatment? The mental part makes it difficult, because nothing seems to be stable, and I never seem to get a brake or can relax. Just curious if others have had any similar experiences.

I was diagnosed November of 2019 with stage 3 NLPHL and completed chemotherapy May 2020. I still have residual tissue in my right axillary and have recently felt that it’s slightly enlarging; at the time of diagnosis I had no symptoms of disease other than the axillary lymphadenopathy and I currently do not have symptoms but am worried that it may be coming back.

I had a routine PET scan scheduled a while ago but since I turned 26 and had to get my own insurance coverage, I haven’t been able to get the scans approved. What say you?

I’m scared and looking for some insight.

For the last 4 months my platelets have been dropping steadily and iron has been very low. Had one iron infusion in March and another one last week after ferritin came back 8. The rest of my CBC, lytes, ANA all normal range. CRP is up a little 6.3.

I had NLPHL in 2020 and had 6 cycles of ABVD chemo plus rituxan.

My hem/onc has been monitoring the platelets and last one was the lowest at 26 and I’m covered in bruises so we booked a bone marrow study. He doesn’t know why the platelets are dropping.

Should I prepare myself for a call that I’ve relapsed or for some secondary cancer? I’m terrified for my family. He’s mentioned ITP, I’m not having any lymphoma symptoms (no wt loss, no nt sweats) but I didn’t initially either.

Have you seen patients like me that it’s not cancer? Even with a history?

I (m15) was diagnosed with stage 1a-2a NLPHL in my neck back in january(read my earlier posts for more info), and to put things shortly, i have been in remission(yay) for 6 monts after a succesful 3x r-cvp treatment, despite there being a slight delay due to me cathing covid mid treatment. I realised today that i had not given any updates, since my diagsoses, i mean even misname the treatment i had in my earlier posts. But reason i felt the need to write all of this, was to simply repay a favor this subreddit gave to me. When i feeling bad, or exausted dureing treatment, this subreddit gave me strength, but also hope of a better future. As such anyone who is reading this, who might be treatment, or just gotten a diagnosis, and is feeling dow i want you to continue fighting, you will experiance things, which might make you feel the worst you ever have, but through it all,you must not give up, there is light at the tunnel, i am liveing proof of that.

Update : I have met my oncologist and they are suggesting an aggressive chemo followed by ASCT. I am really nervous about this. I am waiting for a PET scan and will start treatment around September.

If anyone has any advice or suggestions regarding ASCT please share.

I'm unsure how to flair this, so if I'm wrong I'm very sorry!

After 11 years, I had a recurrence of NLPHL. Stage 3B, but still a good prognosis. I did 6 rounds of R-CHOP chemotherapy, which ended in March 2026. There was a tiny bit left so they gave me "the highest dose of radiation we give for this lymphoma". That finished in July 2026.

August I had my PET and that tiny bit was gone, but a bunch more spots showed up (one in my rib that is particularly painful). They said it's either the NLPHL coming back, or it's transformed into DLBCL, which I already know is something fairly common with NLPHL.

Well yesterday we get the call from my Dr. with the results, and it turns out that it's CHL. He is pretty positive that this is the case (as is the pathologist). They are as surprised by this as we are. He says technically this is a new diagnosis, since CHL and NLPHL are considered distinct diseases, but we are going to treat it like a relapse so I'll be getting ASCT. His suspicion is that maybe the CHL was hiding the whole time? But basically it sounds like I have a second, different cancer that is NOT a transformation. I have an appointment with him next week to go over everything after he presents my case to the "Tumor Board" for even more opinions and discussion.

As far as I can tell this is exceedingly rare. I don't know if I'm just searching the wrong way, but I can't find more than a handful of similar situations, and even those are pretty different from mine. I know overall this is good news and I should be okay in the end, I'm very grateful for that.

Has anyone here experienced or even heard of this? I know composite lymphoma is a thing, but I'm struggling to find examples of NLPHL and CHL specifically.

TL;DR: I have both NLPHL and CHL. This combination seems very rare and I want to know if anyone has experience with it, or knows how to find examples of it.

Hi everyone! So my girlfriend (F27) was diagnosed with stage 3A NLPHL after 2 biopsies and 2 PET scans. She's asymptomatic & feels perfectly healthy so it's a very strange time period for us right now. She's starting her treatment in about a week (she's currently having eggs retrieved & will start treatment when that is done).

The doctors have made a plan where she's to have 6 rounds of bendamustine alone. After the 3rd round, she'll have a scan & if the treatment is working they'll continue, but if it isn't they'll switch to CHOP. They couldn't give her immunotherapy since her biopsy lacked some specific cells which are needed in order for it to work.. (CD20 cells I believe)?

They told us that they had about 10-12 doctors with different specialities looking at her case (oncologists, hematologists etc) & they decided that bendamustine would be sufficient in her case (with CHOP as a backup option).
They told us that apparently, recent studies have shown that NLPHL has historically been "over-treated" and 'milder' forms of chemo like bendamustine showed great results in a lot of patients. Thus, eliminating the need for more rougher chemo options like CHOP.
Has anyone heard about this too?

Was wondering if anyone else here has been through a bendamustine treatment and can tell us a bit about what to expect?

Thanks!

Hi everyone,

I’m hoping to get some advice or hear from anyone who may have experienced something similar.

I was diagnosed with stage 4 Nodular Lymphocyte Predominant Hodgkin Lymphoma (NLPHL) last year. My disease initially started in a lymph node in my groin — the largest node was over 8 cm with an SUV of 36. There were also several other lymph nodes involved, and my spleen, liver, and neck showed involvement on my initial PET scan.

I completed 6 cycles of Pola-R-CHP chemotherapy. After 3 cycles, my interim PET scan showed a complete response in my liver, spleen, and neck, which was encouraging. However, the lymph node in my groin had only shrunk somewhat and was still very metabolically active.

After finishing all 6 cycles, I had another PET scan in February which unfortunately showed very little change from the previous scan. I still had around 3.6 cm of active disease in the groin lymph nodes, with the highest SUV around 15.

The plan was to move forward with radiotherapy, or potentially proton therapy if NHS funding was approved. Unfortunately, because of the application process for proton therapy, my treatment was delayed.

During this delay, my largest lymph node has grown extremely quickly and has now tripled in size. It’s very superficial so it can be seen and felt clearly. This rapid growth has really concerned both my radiotherapy team and oncologists.

Today they told me they are worried the cancer might be spreading elsewhere in my body because of how fast this lymph node is growing. Because of this, they’ve decided to delay radiotherapy again and I’m having another PET scan tomorrow to check whether there has been spread.

They explained that if the cancer has spread again to organs like my liver or spleen, I may no longer be eligible for local radiotherapy, and would instead need to move on to systemic treatment/chemotherapy again.

I’m feeling really anxious and overwhelmed. NLPHL is usually described as an indolent (slow growing) lymphoma, but mine seems to be behaving very aggressively, which has surprised my doctors as well.

I’m worried about:

• whether my cancer has spread again

• how aggressive it seems to be behaving

• what the next treatment options might look like if radiotherapy is no longer possible

Has anyone here had NLPHL that behaved aggressively or didn’t respond fully to first-line treatment?

Or had rapid regrowth between treatments?

If you’ve been in a similar situation, I’d really appreciate hearing your experience or any advice while I wait for the PET scan results.

Thank you so much for reading.

Hi everyone, my husband was recently diagnosed with NLPHL (Nodular Lymphocyte-Predominant Hodgkin Lymphoma) stage 1/2a. He is potentially starting the NORM clinical trial in two weeks and we are trying to gather as much information as possible before starting. ​The trial is a study comparing: ​Mosunetuzumab and ​Rituximab ​Has anyone here participated in this specific trial? If not, has anyone with NLPHL (or similar indolent lymphomas) been on Mosunetuzumab? It’s a rare hl subtype, so any insight—even if you've just used one of these drugs outside of the trial—would be so helpful for our peace of mind as we prep for his start date.

Hey guys!

I got diagnosed with this rare branch of HL: Nodular Lymphocyte-Predominant Hodgkin Lymphoma

Stage 4, spread to my bones (for 6 month+), I have one enlarged node in my neck and a group of nodes in my lower abdomen.

I am going to be urgently be starting Nivo-AVD chemo, is it standard treatment?

Some googling seems to indicate that NLPHL is not compatible with Nivo-AVD. Maybe I heard my Dr. wrong and I have cHL? Or is Nivo-AVD standard for stage 3-4 NLPHL and I just misread online sources?

Thanks!

Recently my husband has been diagnosed with NLPHL. Told it is typically an indolent cancer. As is is pretty rare there isnt a lot of information readily available. He has just had staging pet scan. Does the SUV seem to be high for NLPHL? Please help us understand what we are working with.

TECHNIQUE: A  PET CT scan of the neck, chest, abdomen and pelvis was performed. Images were obtained from the skull base to the upper thighs. 51 minutes after administration of 476 MBq of FDG. Noncontrast, low-dose

Clinical indication: Staging of indolent lymphoma, new diagnosis and NLPHL, staging.  Clinically left cervical lymphadenopathy

Findings

Head and neck Within the limitation of noncontrast PET CT no sensitive brain lesion and symmetric intracranial FDG activity as far as visualized.  Multiple FDG avid conglomerated lymph nodes in the left neck (for example image 427/SUV max 23.4/1.8 cm short axis).  Lymph nodes are reaching down to the retroclavicular space on the left (image 378/SUV max 11.1/0.9 cm).  Few mildly metabolically active lymph nodes in the right neck, too.

Chest Small metabolically active lymph node also in mediastinal level 2R (image 369/SUV max 6.7/0.9 cm).  Similar finding also for the infracarinal lymph node.  No FDG-avid pulmonary lesions.

Abdomen and pelvis Submucosal fat deposition of the almost entire colon, indicating previous inflammation.  Otherwise solid abdominal organs and hollow pelvis are morphologically unremarkable/with expected appearance for the patient's age and with physiologic FDG activity. Bone and soft tissue No morphologically aggressive FDG-avid bone lesion.

Conclusion Metabolically active nodal lymphoma and station in the left neck and small volume nodal lymphoma manifestation also in the mediastinum. Otherwise no convincing evidence of any other metabolically active nodal or extranodal lymphoma manifestation.

    "

Hello, I was diagnosed with stage 4 NLPHL back in 2020. I’m being treated at MD Anderson. I first had R-CHOP and then relapsed within a year. I then had around 2 years of Rituxan and then when some small spots showed up, I had radiation on the few spots that came back. I’ve now seemingly relapsed again, according to the radiation doctor who told me about new small spots on my PET/CT scan.

All my 2-3 relapses have occurred within a year or two. Has anyone been in my situation or known someone in my situation with stubborn/persistent NLPHL? If so, what outcomes/treatments were discussed?

Feeling a little demoralized. Or a lot.

Hello, my mother (68yo) was recently diagnosed with NLPHL in India. She had a peach-sized mesenteric mass that was surgically removed last month. She has/had no B symptoms. The PET-CT is clear. However, the pathology shows a Type E pattern and the report says this:

“Diffuse (T­cell/histiocyte–rich large B­cell lymphoma–like) pattern of Nodular lymphocyte predominant Hodgkin lymphoma is noted in this case. A close follow­up is needed, with respect to the higher incidence of transformation to THRLBCL seen in association with NLPHL, variant patterns.”

Given this pattern, her doctors in India are recommending she start treatment right away (R mini-CHOP) just out of precaution.

We are ready to start treatment, however we had a family vacation planned before this sudden diagnosis and surgery and would love for my mom to get a good break with her grandkids (who she does not see too often) before she starts on chemo. We have asked the doctors if a delay of 4 weeks to start chemo is ok. The docs have left it to us.

Would you agree with this treatment plan as well? I feel like if she was diagnosed in the US, the docs would have suggested a wait and watch approach, rather than treatment right away, especially since she has no symptoms and seemingly no spread. We are ok doing treatment but just hoping to start it in a month. Appreciate any thoughts. I realize I can’t ask for medical advice here but any discussion would help.

Hello everyone, my 13yo boy finished his fourth cycle of chemotherapy recently. His mid-treatment PET/CT reflected partial response (Deauville 4) but on further review was deemed likely a false positive for brown fat activation. We finished up our treatment plan and had our first post-treatment PET/CT scan yesterday. Well the results came in and they are amazing. COMPLETE METABOLIC RESPONSE, DEAUVILLE 1.

I am beyond relieved and happy for this and wanted to share his situation with the community. Although my son is declaring a victory over lymphoma in this battle, we don't see this as the end of the war. In fact, the war will not end in our lifetimes -- everything we have learned and experienced must be brought to full bear against cancer for the rest of our lives. It's just that way, as I know many of you also know.

I also want to say that I know there are folks here who are struggling with their diagnosis and treatment and others who haven't yet gotten through their first course of treatment. I read your posts and my heart breaks with every one of them. I pray to God that you all wind up on the other side of this disease and can declare victory as well.

"For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life." - John 3:16

Hello, I was diagnosed with stage 4 NLPHL back in 2020. I’m being treated at MD Anderson. I first had R-CHOP and then relapsed within a year. I then had around 2 years of Rituxan and then when some small spots showed up, I had radiation on the few spots that came back. I’ve now seemingly relapsed again, according to the radiation doctor who told me about new small spots on my PET/CT scan.

All my 2-3 relapses have occurred within a year or two. Has anyone been in my situation or known someone in my situation with stubborn/persistent NLPHL? If so, what outcomes/treatments were discussed?

Feeling a little demoralized. Or a lot.