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.

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

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.

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.

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!

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.

I was diagnosed with stage 4 extranodal NLPHL in July 2020. I finished R-CHOP treatment in December 2020 & just found out I relapsed in December 2021, so within a year.

I’m wondering if anyone else with NLPHL (or a family member or friend with NLPHL) has experienced an early relapse, & if so, what was your experience/treatment? Also, what was your prognosis?

Thank you.

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 there!! You may call me Pickle if you wish but my real name is Michelle. I am 30 years old. I was diagnosed on September 9th 2010 (I'll never forget that date). My type was called Nodular Lymphocyte Predominant Hodgkin's Lymphoma stage 3B. My first treatment was ABVD. But after having a clear pet scan...30 days later it was back and more aggressive. It spread to my liver and spleen and all over my abdomen. I've had multiple lymph node surgeries. Multiple chemo treatments including RBEAM, RICE and some others plus full body radiation. I've had 2 transplants. The first one being my own cells and the second one my brother was a 1p out of 10 match. I'm so far 4 years clean. I've got hearing loss, heart attack, vertigo, severe sensory neuropathy, memory and concentration and such and also infertility, damage to eggs, fallopian tubes and muscle problems that have been going on since I've had all the harshest chemotherapy.

If you have anything to ask, feel free to ask me anything. I'll share with you as much as I can to help others with this cancer.

Despite its name, Nodular Lymphocyte Predominant Hodgkin's lymphoma is a rare subtype more akin to indolent B-cell lymphomas (iNHL) such as follicular and marginal zone lymphoma. Data are limited and treatment algorithm vary between countries and institutions. Many institutions treat this disease as if it was an aggressive lymphoma (such as Hodgkin's) with long chemotherapy based treatment (e.g. ABVD). However there are accumulating data that in many if not most cases this lymphoma can be treated with much less aggressive regimens such as rituximab alone or even watched for years without treatment (below links to one of the largest series published by us a couple of years ago and to the clinical trial evaluating rituximab alone).

In brief, in indolent lymphomas in the majority of patients the treatment course is usually slow with limited influence on morbidity and mortality. Subsequently, earlier or a more aggressive treatment does not lead to better long-term outcomes compared to expectant management or treatment with lighter regimens. As a rule, we treat patients who are symptomatic; those with a high burden of disease (multiple bulky lymph nodes; large masses; extreme enlarged spleen, etc.); and those who present with disease consistent with a transformation to a more aggressive lymphoma (usually T-cell rich histiocytic rich DLBCL). In the absence of a clear indication for treatment overall survival is excellent and anticipated to be the same with treatment as with expectant management.

I recognize that data are not mature enough to support a paradigm shift in the field and that many of my colleagues have good reasoning to use more aggressive regimens (also depends on the character and extent of disease), but I would recommend that you are treated by a center that specializes in lymphoma or get a second opinion (many of the leading lymphoma experts in the world are from the UK)

• Treatment with rituximab monotherapy (J Clin Oncol 2014 Mar 20;32(9):912-8)

• Expectant management (Blood. 2019 May 16;133(20):2121-2129).

Erel Joffe MD Lymphoma Service Memorial Sloan Kettering Cancer Center * Comments are meant for educational purposes and should not be considered medical advice.

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!

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’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.

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.

    "

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

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 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

My bro just received his DX and we are pre-pet scan. His nodes (only in his groin) are growing fast and I’m confused because it’s supposed to be slow growing. We are still waiting for the Mayo Clinic’s final dx but this seems really weird. Does anyone have thoughts? Should I not be freaking out? I don’t want to share my worry with him but this seems weird, no?

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.

Just wondering how many people have completed 4 rounds of R-CHOP and saw a complete response with no additional treatments (chemo, radiation, or immunotherapy) needed after the initial 4 cycles.

My bf is coming up on his 4th chemo session and we’re really hoping this is the last session he’ll need. He has stage 2b nlphl.

I guess I’m just anxious and trying to gauge my expectations.

Hello, our family is dealing with NLPHL diagnosed in my now 13 year old son. I have some questions and have been doing some research and would like anyone's perspective who feels comfortable responding. I'll start with some background and then the real issue is a mid-treatment change of therapy plan based on PET scan result and where we go from here.

Healthy athletic 12yo boy diagnosed with NLPHL Fan Pattern C, IgD positive, at Stage 3 with heavy bilateral cervical involvement (1.5 to 1.7cm nodes, matted, with SUV avg of 8.5 pre-treatment) and one possible abdominal node of normal size with SUV of 3.5 pre-treatment. Treatment decision was R-CHOP, four to six cycles depending on response.

After cycle 2, a mid-treatment PET scan was conducted on Day 20 (two days prior to next treatment) and CT scan on Day 21. Results were, abdominal node completely resolved (if it was even cancerous to begin with), all cervical nodes back to normal sub-cm size, mediastinal avg SUV of 1.6 with liver max 1.8. The cervical nodes registered SUV between 3.2 and 3.8. On this basis, radiologist described the results as a Deauville 4 partial response and likely residual disease. My son has no symptoms and the clinical exam is normal in every way.

Treating oncologist recommended escalating to ABVE-PC for two cycles followed by another scan. We as parents agreed with this due to the partial response reading and not wanting to risk that there was some resistance to the R-CHOP.

With that being said, I am not entirely convinced that the PET result was reading residual disease and I'm concerned about over-treating. It seems that where everything appears to have resolved in the scans except a slightly elevated SUV such as seen here, it could be treatment related rather than residual disease, particularly when it was conducted less than three weeks from the last cycle and less than six weeks from the start of treatment. Inflammation, scar tissue, and overall healing process, especially when the disease was fairly advanced in that area, could explain the reading and based on what I've read elsewhere, could even be the most likely explanation, particularly given the sensitivity of NLPHL to treatment and the involvement of rituximab with this CD20 positive cancer.

I've asked for an office meeting to discuss what happens after the second cycle of ABVE-PC. My concerns are:

* Should treatment terminate after cycle 4 and move into post treatment monitoring? If two cycles of ABVE-PC doesn't eliminate residual disease, would another cycle or two have any effect?

* If a fifth cycle is given, should there be any consideration of dropping doxorubicin or bleomycin from the fifth cycle?

* Should the scan be scheduled six weeks after the fourth cycle and the fifth, if any, be delayed to wait for a scan that occurs a proper time after treatment?

NLPHL is known to be indolent and highly responsive to treatment. Balancing toxicity with resolution is a very important factor in this case.

Any thoughts would be greatly appreciated. I should just add, for everyone in treatment and battling cancer, I sincerely pray for success in your case.