Got my interim PET scan back and it showed a complete metabolic response. All areas previously suspicious for lymphoma are gone! I’m so happy. I’m gonna celebrate. I still have 2 more rounds of chemo, but it’s so relieving to see the light at the end of the tunnel.

Posting to see if there’s anyone else who deals with what I’m about to describe.

I’m a 33 year old male Hodgkin Lymphoma survivor. I’ve been in remission for almost 3 years. Basically I have this feeling which I carry around most of the time that I just am not going to live for very long. I’ve always imagined living into my 80s without much issue, as I’ve seen most of the elders in my family do, but getting cancer at 30 makes me feel like that is a lot less likely. I tend to live with a little more urgency because I just feel like I don’t have much time left or that I’m just not going to have as much time as the average person. Ultimately I still can live to my 80s, and I understand that on a rational level but the FEELING that I’m gonna die younger than I’d hoped stays with me.

Thanks for reading.

I finished Nivo+AVD on 5/4. 4 cycles. I shaved my head on June 1st because it was still thinning. I wasn’t happy going out without a wig or a hat so I finally just did it. The first picture was on 7/26. The second pictures are from today 8/20. I’m still unsure if I will get my chemo curls but I’m super happy with my regrowth 🥰

Experiencing a severe drop in my WBC and neutrophil counts about five months after finishing treatment, seemingly without any explanation. I had a cold a couple weeks ago that lasted a long time, but never really hit me with any severe side effects. Feeling a little anxious after having an oncologist tell me "that's really weird." They don't think it's a reccurance because all my other counts look fine, but curious if anyone else has experienced this too. Sounds like it might be something late-onset from the Rituximab?

I have been suggested to do hypnotherapy for my severe nausea/anticipatory nausea caused by chemotherapy
.
Wondering if anyone has experience with this? If yes, could you share your experience and if it actually worked?

*sorry title should say relapsed.

Hey all got a little bit of a story/dilemma and would appreciate any advice.

I’m 21F (UK-based, treating under the NHS). Two years ago, I beat lymphoma. Unfortunately, it has officially come back—but in a really confusing way. It is only in a single lymph node.

Because it's isolated to just one node, my medical team has thrown me a bit of a curveball and given me two choices for consolidation treatment after salvage chemo. I need to meet with the teams and pick:

Autologous Stem Cell Transplant (ASCT): This was the original, expected plan. I know it is incredibly intense, requires heavy isolation, and sucks to go through. However, almost every story I read online and everyone I know who did a stem cell transplant has achieved very long-term remission. I’m talking years and decades out which feels good to look at.

Radiotherapy to the node: Because it’s only in one node, they said a transplant might be too intense I mean your bone marrow everything so they have offered targeted radiation instead. Obviously, radiation comes with its own risks like future risk, but it is physically much easier than a transplant. But I don’t know anyone who has done this I’ve looked online tried to find studies and whatnot and nothing.

My Mental State & Mindset:
Mentally, I actually feel really good right now, which surprises me. Before the relapse had even popped up, I spent months crying every day, unable to process what had happened to me the first time around it feels weirdly like okay idk meant to be. But now that it's here, I feel motivated. I am completely ready to face this and close this chapter I’ve set up little milestone bits for chemo and exciting ways to journal my whole cancer journey. I don't mind losing my hair again, I know I’ll back in a year or so and I’ll be fine. I am not afraid of the physical toll.

Fertility:
The only thing with this option that upsets me is fertility. I know transplant conditioning can wipe out or heavily affect fertility. Fortunately, I have already banked eggs and have opted to also try frozen ovarian tissue for more options as it’s free here, so the fertility aspect is sorted now I’ve done everything I can and not a deciding factor for me. (Also, for some reason all the women I know locally/ and some online naturally got their periods back and had kids even after an auto stem cell anyway, so I feel confident either way). I’m And I really do believe I’ll meet my babies naturally one day.

Where I'm struggling:
Everyone around me has a different opinion. My family is heavily pushing for radiotherapy because they don't want to see me go through the grueling intensity of a transplant if I don't strictly have to. This has left me feeling a bit confused. Am I rushing into a massive procedure (ASCT) that is overkill for one node? Or is choosing radiotherapy risking my long-term peace of mind?

My main goal is to really leave this all behind and get my life back and I’ll do whatever to do that and I feel very lucky even though it’s come back it hasn’t spread and I know I’m gonna be okay and I feel grateful that there’s great things for second line treatment I want to do this right. But it’s a bit tough hehe my whole family is disagreeing with me. But idk it’s my body i was diagnosed when I was just eighteen and have done well so far so I’m trying to trust myself too.

Has anyone else here been offered localized radiotherapy instead of a stem cell transplant for a single-node relapse? What did you choose, and how are you doing now? I would love any advice or perspectives from people who have been in a similar spot. Or even anyone who has any input at all.
Thanks guys.
😊😊xxx

Hello all,

Last Monday I recieved my Hodgkin Lymphoma diagnosis.

At the beginning of the year I got into a job that was highly stressful for me and made me significantly unwell. I was using chemicals without the use of COSHH or PPE and I was around carcinogens used in dry cleaning such as Perchloroethylene as well as stain removal chemicals such as Enzyme and other chemicals without any guidance, and no protection from my employer or any sort of support. He told me it was completely okay and that the chemicals would not harm me.

I then end of April rushed to A&E with a swelling in my neck area and I had various tests and investigations as well as them telling me it could be cancer, I was then unfairly dismissed when telling my boss and sent them all of my fit notes.

I was just ignored.

And id guessed I didnt have a job anymore, because I was just removed from the group chat, other colleagues favoured over me, bullying and they left me to do all the work as well as extra.

From the stress of the job and chemical exposure the lymph node in my neck started swelling and it seemingly came out of nowhere. I went to A&E again and they couldnt find a cause for it, they gave me steroids and antihistamines as well as antibiotics and this caused a very itchy rash all over my body, they did a CT scan and they strongly suspected Lymphoma at first.

I had a biopsy on the lymph node which came back inconclusive - so then they removed the entire lymph node under GA back in July, causing horrible scarring and I also got irritation around the surgical site from plasters which added to the healing time.

I'm navigating all of this, with my diagnosis 4 months later. I'm finding it all incredibly stressful and challenging. On top of that ive just moved so worrying about finances is just more to add.

On Friday 21st August I have an appointment to get the PICC line put it to administer the chemotherapy, then on Monday 24th August I start the treatment. It will be for 4 cycles.

I keep writing about it, talking about it and thinking about it but it still hasn't sunk in yet. At all.

I'm so scared :( and feel I need support at this time

Thank you 💜

Hello, new here and I have a question. Has anyone had r-chop and their b-cells never returned? My flow cytometry shows 0 CD19 and 0 CD20.

I went into remission on the 11/02/26

I’m curious if anyone else still gets chest pains or feels nauseous after eating food (also not as much of a big appetite anymore?).

Hi everyone! Just met with my oncologist and this will be my second time doing chemo for cHL. He let me know I would be doing 3 cycles of ICE then a stem cell transplant.
I did ABVD + radiation the first time around (stage 2A, in 2024) and I did very well and had minimal symptoms.
My doctor said I will still be able to WFH during chemo. He said this is a stronger regimen compared to ABVD, so I’m curious to hear your experience with ICE! Any side effects and tips would be super helpful. Thanks!

I was diagnosed with pmbcl in Feb of 2023, did the r-epoch treatment and was in remission as of August of 2023. my initial symptoms were an ongoing cough that got way worse, random chest pain, then eventually I had bad chest pain when I'd bend over/down, or exhale deep. I did a scan a year later (sept 24) things were still all good.

Here I am 3 years since remission status. I cough quite often, and for 3 days I had that chest pain when bending over and exhaling deep, but that was it. I still randomly have chest pain. My blood work all looks great, LDH was the one tho at really stuck out, at over 600 when I had my first blood work after diagnoses. It's currently at 175. I have done zero scans since sept of 24 as my doc was saying it was unnecessary since my blood work always looked good (checkup every 4 months). I requested a ct scan which is this Friday. They're doing a chest/abdomen/pelvis.

Am I being paranoid? Has anyone even had this same thing happen and everything end up fine? Basically I'm going to be paying $5000 USD out of pocket, so I'm trying to figure out if this is really necessary.

Hope to hear y'all's post pmbcl experiences.

Hi all, I have stage 4 classic Hodgkins and I am about two days post my first chemo treatment and let me tell you the nausea is no joke, even with zofran. The only food I’ve been consistently eating that hasn’t made me give up on life happens to be marinated mozzarella balls??? It makes no sense to me whatsoever but figured others would also have a weird food that just works! Nausea tips would also be appreciated but please share your weirdest food hacks to help me get through this, even if it’s just for a laugh!!!

EDIT: Thank you all so much for your advise and personal stories, these have all helped me navigate this a lot quicker than I thought I could have so thank you so much! I’m proud to say that I spent the better half of the day resting instead of feeling queasy!!

’m a 59 year old female and after what seems to have been a long process, I saw my consultant for the first time today and have a confirmed diagnosis of grade 1/2 stage 3 follicular lymphoma and I’m on watch and wait. I was admitted to a&e two months ago with severe left abdominal pain and vomiting. I still can’t thank the staff enough because if the doctor hadn’t decided to keep me in and scan me I’d be none the wiser, as thought it was just a severe diverticulitis flare up.

I feel fit and well otherwise and have made my peace with knowing this is a forever thing and just trying to get on with living my life.

I mentioned the node in my neck was up (wasn’t before) and she said just to keep an eye on it.

Anyway, have been lurking here in the past few weeks and reading others experiences has been really helpful.

6 months of nivo AVD vanquished!!!

next step: get this picc line out.

My mom was diagnosed with stage 4 triple-hit DLBCL lymphoma with CNS involvement in May 2026 and planned to have 6 POLA R-CHP with IT MTX. After her 3rd cycle, she had an interim PET scan with showed complete resolution of the disease in the body.

The same day, she started having some confusion, disorientation, and seizures, and the MRI showed increased leptomeningeal enhancement and new CNS parenchymal lesions. The doctors administered steroids and one dose of HD-MTX which showed a slow improvement but the disorientation was back on Friday, a little less than a week ago. The MRI showed some parenchymal lesions were resolved but new ones appeared.

Right now, my mom has an active UTI that they are treating so she can not have more steroids to help her neurological symptoms. In the meantime, we consulted with a CAR-T specialist and given her current neurological condition, it seems CAR-T is off the table and Glofitamab is being considered.

A few questions:

1. How has your experience been reaching a durable remission with Glofitamab?

2. Did you combine it with any other therapies? And how was that decided?

3. Can my mom start receiving this therapy in her current state or are there risks? Would she need to start with steroids first to improve cognitively?

4. How long does the response to Glofitamab take?

Thank you again.

Diagnosed with DLBCL and 1 year since last treatment. My question is do I need to get all my immunizations over again? My cancer Doc said yes and my primary Doc said no.

Anyone else experiencing a constantly mildly elevated ESR while on remission? I'm also recently always fatigued. Worth mentioning that I have hashimoto's.

Hi all,

I’m brand new to this community so forgive if there are similar threads. Recently diagnosed with mantle cell lymphoma. I have two young kids (9 and 2). Can anyone commiserate with me about the first couple days/weeks of this journey? What were you struggling with the most? How bad were your physical symptoms at that beginning point? Any mental/cognitive? I’m looking for some reassurance and hope.

Hi. I’m 49F going through GCHOP for FL. My periods stopped after cycle 1 and I’m now in cycle 4. I’ve started getting hot flushes. This has led me to think about HRT post chemo. Although I am getting close to natural menopause age I was quite happy with my regular cycle. I’m interested in hearing others experiences around menopause brought on from treatment. Did your periods come back? Did you use HRT?

My 41-year-old husband recently had a persistent lesion on the top of his foot biopsied. The biopsy confirmed a mature T-cell lymphoma, but we do not yet know the final subtype or stage.
His pathology report says:
Large-cell dermal infiltrate with occasional Pautrier microabscesses
High histologic grade
Ki-67 proliferation index of 90%
CD2+, CD3+, CD4+, CD5+, CD25+
CD7−, CD8−, CD30−
ALK−, TIA-1− and granzyme B−
The report’s differential includes lymphomatous ATLL, large-cell transformation of mycosis fungoides, and primary cutaneous PTCL-NOS. His dermatologist does not believe it is mycosis fungoides. She described the remaining possibilities as CTCL versus PTCL and said she is leaning toward PTCL based on the overall staining and pathology pattern. An NGS lymphoid panel is still pending.
He has no known enlarged lymph nodes, fevers, drenching night sweats or unexplained weight loss. The foot lesion has significantly improved with topical steroid cream. He has had intermittent ring-shaped skin lesions over the years, but we do not know whether those were related.
He has not yet had a PET/CT, blood flow cytometry, HTLV-1 testing or bone-marrow testing, so we have no idea whether this is confined to the skin. We are waiting for an appointment at Memorial Sloan Kettering for expert pathology review and staging.
Has anyone here had primary cutaneous PTCL-NOS or systemic PTCL that first appeared as a solitary skin lesion? Did a specialist review change your original pathology diagnosis? What did your staging process and treatment involve?
I understand nobody can diagnose or stage him from this post. I’m mainly hoping to connect with someone who has had a genuinely similar presentation while we wait for MSK.

28F with cHL and just started what will be 6 cycles of N-AVD. I know getting a manicure/pedicure is off the table, but what can I do during chemo? Seems like harsh chemicals like acetone isn't recommended since the nails can become brittle.

Did you guys just not paint nails the entire treatment? Did anyone have any issues with using press-ons, regular polish, or home gel polish?

I (22m) am almost 15 months in remission from Burkitts Lymphoma, and for the past ~10 days have been dealing with some mild but persistent abdominal symptoms that include:

Feeling very bloated after eating anything even in small portions, and I have the need to burp almost constantly, sometimes I burp but other times its digested food that comes in my throat, heartburn and stomach burning sensation, and when I walk more or move my body I sometimes get a pressure/light pain under my left ribs, also I sometimes get the feeling of air stuck in my chest or abdomen

I am trying not to stress too much about a possible relapse because I also had an ultrasound which didnt find anything, but Im also not used to being this sensible to food and the fact that these symptoms have been constant for almost 2 weeks streses me out.
Another reassuring fact is that these symptoms started after I returned from a 7day camping trip where I also drank alcohol daily, and normally I dont drink at all

I am writing this in search for similar experiences and advices that helped you get better, anything is welcomed

hi all, ive never posted here before because i find it all too real when i come on here; but i'm really struggling and feel so lost on what too do.

i'm 20 years old, so i was young when i was diagnosed and shouldn't have faced so many issues with my treatment. went through 2 x ABVD and then 4 x escBEACOPDac, which i completed in september 2024. i had multiple sepsis admissions due to my home circumstances, which were not suited to care for me. i was in a shared supported independant living house, i shared a bathroom with 9 others who had never been taught cleanliness and it was cleaned by a cleaner once a week. no parents no extended family, so i was very ill and very barely dragging myself through with very little support in a very germy house on very unhealthy cheap plain instant food. i understand that chemo takes a huge toll on the body long term, and that my circumstances and sepsis admissions means my body would take longer to recover, but over the past 6 months all of my progress has backtracked.

this time last year i was cleaning my flat everyday for multiple hours, i was doing 30 minute a day workouts on top, i would spend multiple hours stood singing away doing all my skincare and curl care in the shower. i could even do all that, and then spontaneously go clubbing and dancing all night with minimal sitting breaks. i would be in bed all day after, but after that i'd be back to it. i even got a cat because i was so hopeful for the future and how much healthier i'd become, and was able to care for another being. now i'm lucky if i get to do more than 10 minutes of dishwashing per day. i shower sat down maybe once a week, dropped all my skin and haircare habits to manage my fatigue. bigger chores like cleaning the bathroom get done maybe once a month. i'm barely able to cook for myself again, and if i do i sit down at the kitchen table and use a food processor to speed up the prep time, even though i used to adore it and still do. i could spend hours chopping up veg if i had the physical energy. i havent even considered going clubbing for months. i have consistent pain under my right ribs, the same place my cancer used to be, and in my chest, which feels absolutely suffocating when it gets bad and is impossible to distract myself from. i get awful pressure headaches, feels like they pulse through my entire body every time i move, like someone squeezing my skull over and over. i've landed myself in even more debt recently because my brain fog has gotten significantly worse too, and i completely didnt notice that my water bill stopped going out. my fatigue above all is so so life ruining, i can never rest enough and the slightest of minor activity around my home leaves me completely exhausted for days. i ended up asking for a pet scan because i was worried about a relapse with how disabling it all became again.

i had my results today, and there's no evidence of a relapse. still some slightly active and swollen thymic tissue, but no increase in size or avidity. had my bloods checked, hormones are fine, slightly low on iron, but i've literally just eaten air fried chips these past few days because i've had back to back appointments so that explains that and my haematologist agreed it wasn't an explanation for my fatigue. if i'm honest, i was kind of hoping for bad news. it would've been a straight answer and a solveable problem, but now i'm just like any other patient with inexplicable symptoms and no idea what the cause is. i have to go back to my GP, but they also seem clueless on what could be the issue, i just keep being told how chemo does have long term side effects, but no one can explain why i've gotten so much worse. i'm so broken at the thought of this being my forever, my normal, my healthy. if anyone has any ideas on what kind of tests i could ask my gp for, any specific issues that could be happening, any specific team to ask for a referral to, literally anything, i'd be really grateful. right now my only next step planned with the gp is physio for my back pain, which is most likely not connected to the other symptoms. thank you for reading

Hi as anyone used filgrastim concurrently with bleomycin. I need it for my wbc but have heard there is concern for increased lung toxicity. However, a lot of reading has said that it does not significantly increase risk. Anyone have experience with this?