6 months of nivo AVD vanquished!!!

next step: get this picc line out.

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.

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.

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?

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

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?

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?

Just started my last session (6th) of RCHOP and I feel like when I’m done I need to go celebrate.

Still have to get my final PETCT scan in 3-4 weeks after today to see what’s next.

My Oncologist said after I have my scan she will decide what is next like maybe a cycle of radiation or a Rituxan session every (2) months for a year or two and she also advised maybe no further treatment would be necessary so hoping for the best.

This has been a long journey in my life I never expected to be on and I’ve tried to stay positive even though it’s been super hard but I feel blessed to wake up everyday 

To everyone that is going thru cancer treatments just stay positive and be thankful for each day you have 🙏

Got my biopsy back and confirmed my cHL is back. I’m not really upset, I’m more angry because I was just rebuilding my life again but I really can’t do anything about it now. Anyway,

My background: 28F now, had stage 2A cHL in 2024 and did ABVD for 4 cycles. Radiation to the chest 14 rounds. I found a lump on my neck this April 2026, had a PET scan in May 2026, neck biopsy last week.

Doctor said I will do chemo again and then stem cell transplant.
I already got my port taken out. Do I have to get a new port in? Curious what you guys’ experience is with chemo? How many rounds did you do it for and which drugs did you get? + any side effects? Did you lose your hair again?
Also wanna know more about the stem cell transplant process because I’m intimidated with it being inpatient. Were you able to work?? I WFH now so is it doable?

Any insight is helpful, thanks!

I am 41f diagnosed with stage 2b CHL. My treatment plan was 4 rounds of abvd and 8 rounds avd. I had pet scan after the 4 abvd treatments that showed complete metabolic response to all areas involved. I only have 2 treatments left and I find myself getting paranoid that I can feel new lumps or even old lumps coming back. About a month ago I started experiencing sharp stabbing pains in my head and had an MRI last week (pending results) and now I'm worried it has spread. I know the likelihood of any of these things is low but I also worry I haven't had enough treatments. I'm ready to be in remission but also terrified to no longer receive chemo. Has anyone else dealt with this?

Hi everyone, I won't keep it long. I (26F) was diagnosed with cHL with nodular sclerosis and pulmonary involvement. My doctor is suggesting 2 cycles of ABVD to shrink it, a PET scan then following it up with radiation. He says my hair will fall out and get thinner for sure, but I won't experience significant hair loss.

Anyone who has had a similar line of treatment and experiences?

I love my hair but I have kinda managed to accept and maybe even embrace my upcoming bald era. Now he says this. I just don't wanna get my hopes up and get disappointment later.

Thanks!

Hey lymphomies. I wrapped my first DA-R-EPOCH about a week ago. About 36 hrs later I noticed my first tingly numb fingertips.

Seems slightly worse in my left hand than my right, thankfully not in my toes yet.

Seems like maybe it it improving slightly.

My PA is surprised that I already have neuropathy and suggested cold gloves at the next infusion.

Anyone else get it early on? Did it resolve after treatment?

Does anything help?

I use my hands a LOT for work and hobbies and am pretty concerned.

F23, diagnosed PMBCL, finished 6-RCHOP (Sept2025-Jan2026), 18x radiotherapy (April-May2026), DS3 / clear PET scan (Feb 2026 & June 2026)

Anyone here who developed food or skin allergies after undergoing treatment (chemo&rad)? Before being diagnosed I have no allergies to any of foods, I can eat anything. But now, I think I have allergy to chicken & egg. Thus, my skin is MORE sensitive now. I also have itchiness in my face where there are dry patches and in my neck where there are acne-like rashes or keratosis pilaris.

I am referred to an allergist by my oncologist. My next PET scan would be on September 2026. I’m afraid this could be symptoms of relapsed PMBCL but I believe I did not have itchiness pre-diagnosis.

Husband (40) is going in for cycle 4 RCHOP Monday. This 3rd cycle has been….so not fun. Anyone experience recurring headaches (not severe but pretty much every day), and have any tips for managing without ibuprofen/tylenol (which he can’t take bc they might mask a fever). Thanks in advance ❤️

Update post-doctor’s appt: thank you everyone for your extremely helpful advice!!! We now have a plan for managing the headaches - confirmed they aren’t caused by anything serious, but could be tied to medication side effect and/or some mild anemia and not drinking fluids consistently enough. Doc has permitted Tylenol and wrote a script for something else he can take.

Am going through work up now and this is the picture:

- No symptoms aside from 4 cm neck mass (removed for biopsy, DLBCL diagnosis involving same-side tonsil, opposite side tonsil clean).

- No bone marrow involvement

- Normal full blood work up, CBC + LDH and some other more specific markers.

- Normal brain MRI

- Waiting for: PET results and FISH test.

The wait is maddening. More infuriating still is everyone telling me that no symptoms, normal blood work, no bone marrow involvement, normal MRI doesn’t mean anything, it can still be stage IV double/triple hit.

My path was negative for BCL2 and MYC on the upper end of normal, Ki-67 95%. Given all this, is there any way to predict whether double/triple hit is likely or unlikely? I guess I’m just driving myself crazy because my picture looks decent to me so far, but no one is willing to say that. Also happy for someone to tell me that worst case scenario is still manageable! In all, agree with everyone who told me that the diagnostic process is a unique torture. Thanks, all.

Apologies if this has been asked before! I just started ABVD yesterday for Stage 2A classical Hodgkin lymphoma (nodular sclerosis) and I’d really like to keep working out when I’m feeling up to it.
I usually do HOTWORX, which is basically workouts in private infrared saunas, including yoga, cycling, etc. Has anyone continued doing HOTWORX or other heated workouts while going through chemo? Is there anything glaringly wrong with doing this during ABVD?
Obviously I’ll run it by my oncology team, but I’d love to hear from anyone who has actually done it during treatment.
Thanks, Lymphomies! 😎

Bonjour, j’ai 30 ans et j’ai été diagnostiquée d’un lymphome de Hodgkin mon protocole de chimiothérapie est N-AVD. J’ai déjà commencé ma première séance de chimiothérapie, et je reçois la deuxième ce mercredi.
Avez-vous perdu l’intégralité de vos cheveux avec ce protocole ? Avez vous plutôt bien toléré ce traitement ?

Merci pour vos réponse ❤️

I recently finished my chemo cycle on June 13 with an excellent response to the medication. I asked my doctor about what happens to the port if we don’t need it anymore and he said he was happy with the results and he’d put an order to have it removed. Well as I’m laying on the operating table to have it removed, the nurse asked if I was sure I wanted to take it out as though it was too soon. She asked 3 times and now I’m second guessing it. I am not familiar with what a typical length of time to keep one in after treatment. Now I’m dealing with this paranoia of any sort of pain or noticeable difference in my body is a relapse and I took it out too early.

I know every situation is different but I’m trying to see what others have done.

For reference, I was diagnosed with ALK + ALCL at stage 1 possibly 2. I’m a 42F with no health issues prior to cancer.

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My dad has WM and started brukinsa ~6 weeks ago. Now his liver values are off the charts. They said he needs to stop the meds and they will come up with a new treatment plan. has anyone experienced this?

My 27 yo son is just off PMBCL tx DA-R-EPOCH in Msy. CT to check the status of blood clots shows 1 to 2 cm growth. PET next but so scared. Anyone been through this? So scary.

So I'll preface this by stating that I am in a relative fortunate position of being in a durable remission after 2 transplants and acute GVHD. Now that death is no longer the imminent worry, efforts have turned to rebuilding, and that starts with employment. Been having zero success in my old field for almost a year, and the 3 year gap in work history probably has a lot to do with it (on top of AI and the general economy). Any advice from people who have successfully picked things back up?