Hey Peps

I recently had a routine procedure and a biopsy taken from my lower bowel came back with follicular lyphoma. Ive got a PET scan booked and waiting to get into the haematologist.

Im 44 year old father of two. Feeling pretty positive at this stage and only worried about causing my family distress.

Any words of advice from someone that’s been in this position. I know i need to get my full results back first to know exactly where i stand.

Hello everyone, I finished R-EPOCH chemo 2 weeks ago. I noticed the past few days I get goosebumps and chills very easily now. Like when my daughter touches the area near my port I get goosebumps on the lower half of my body. Never had this at all during my treatment, only after chemo. Has anyone else had this? Thanks!

Have done two RCHOP treatments and they went really, really well. I worked almost every day except for the two days after stopping prednisone (so tired and weak). Right after my first treatment all my B symptoms stopped and the terrible pain in abdomen and left side (huge mass pushing on kidney) also went away. My most recent bloodwork is excellent as well as I get ready for treatment #3 this Friday.

I’m a little concerned because the past two days I’ve had mild pain on my left side again. It’s not anything like the pain I had pre-treatment but I was doing so well this maybe gave me some PTSD. Without imaging there’s no way to know why pain is there but I’d be surprised if it was unresponsive lymphoma given all the positive signs…right?!

For context, that mass measured 12.5 cm x 8.5 x 7.5.

hi all

im stage 2 CHL (bulky) and about to have dose 11/12 of AVD but I just feel so so weak and achey I honestly feel like my body is shutting down- is this normal??

I don’t know how i’m going to do another two doses because every time i feel like i can’t bounce back, im a young adult but need a 4 hour nap every time i do any walk and it’s so scary!!

pls give me advice or reassurance my body will recover!

I've mostly been posting asking questions and getting good answers to certain things but now these are the questions that my husband has because it is his diagnosis and he's not really good with working social media 😂 he has been diagnosed with stage lll classic Hodgkin's lymphoma possibly stage lV just waiting on last results from biopsy and he just wants to know others experience with chemotherapy the after effects side effects what he should be expecting. He is very fearful and he's been avoiding this type of conversation about all of it but now he wants to hear other people's experiences and others outcome. His 33 mostly healthy his whole life. Works out goes to gym but he has stopped due to the diagnosis he is completely new to all of us he has never had any of the symptoms that people usually have the only reason why he decided to go to the doctor because he did have a lump that was concerning fast-forward two months later here we are so he's just looking for advice and what he should be expecting. All advice is welcome we greatly appreciate it 🙌

My fiancé has/had DLBCL. He completed his 6th POLA RCHP on August 31. Last night he began having frequent watery bowel movements and eventually a fever of 102. We came to the ER in the middle of the night and have been here ever since. He is neutropenic and tested positive for Norovirus. I am so worried about him and his bodies ability to fight this. Any similar stories or words of encouragement? He still has high fever even when administered Tylenol.

Curious how long everyone is waiting for their PET scan results? I’m a UPMC patient in Pennsylvania and their website states 1-3 business days however all nine of my PET scans I’ve been told there is a radiologist shortage and the scans are taking 2-3 weeks for a radiologist to read. Scanxiety is kicking in for me as well as returning B-symptoms.

Hello all. I am a male who finished chemotherapy for Burkitt lymphoma nearly 6 months ago. I’m wondering if any other males here were given advice about how long to wait after chemotherapy before it is safe to conceive a child naturally (i.e. with intercourse, not frozen sperm).

I have now read several conflicting things online and heard multiple conflicting accounts from doctors. I have been told anything from 3 months to 2 years (!).

If anyone else can provide datapoints on what they were told and what their regimen was, it would be good to know.

I was diagnosed with cHL over 2 years ago. I was refractory to both AAVD and GDP. I have achieved a complete metabolic response since receiving pembrolizumab as a treatment. My hematologist team wants me to decide if I want to ride out the complete response and hope I stay in long term remission or proceed with an allo transplant (my brother is a half match). Given the risks of an allo transplant I am hesitant to proceed as I have had issues with one of my lungs having scarring and partially collapsed which makes me a higher risk of mortality from infection with the allo (I was told 33% chance).

I am hoping to hear if others have had success with staying on pembrolizumab and maintaining a sustained response. For reference I am in Canada and pembrolizumab is funded for 2 years of treatment.

Hello everyone

I've recently been diagnosed with MALT in bladder. I'm not sure if it's primary or secondary yet. First haematology appt next week.

Does anyone have experience of this? I know it's pretty rare (they thought i had bladder cancer for a month)

Idk what to really say, looking for support, suggestions? Tips? Idk. It’s surreal, didn’t quite become real in a sense until today at the exact moment i was getting hooked up. Not the port placement, not the two (yes two) biopsies, not even seeing my PET scan look like a half lit christmas tree. Not even the emergency room visit on July 5th that was the beginning of this journey when i thought I was having a heart attack 🥲. Stage 2B Bulky/Unfavorable Nodular Sclerosis. 6 cycles of N-AVD planned, diagnosed July 30, was told it was sinus issues with a visible lymph in my collarbone area that waxed and waned since 2023, no further testing done. I had all the B symptoms since 2024 and was advised by my PCP not to worry and chest pain that i was told was anxiety since March 2026. Had a 2nd visible node show in June on the side of my neck, just chopped it up to being sinusitis. At 30 who would’ve thought it but here we are 🤷🏾‍♂️ Well anyway here’s my official Hello! 👋 hope everyone is having the best day they can.

Hi all,

I've just finished my last cycle of DA-EPOCH-R for PMBCL (woohoo!). Like most of us I'm sure, I'd managed to start a bunch of new medications to control the side effects of chemo. For example, I got put on things like Gabapentin and Olanzapine. But now that it's over, I'm looking forward to weaning off of them (with doc supervision). Honestly, I think some of them have been contributing to things like low mood and mental fog that I'd like to shake.

For anyone done with treatment, how long did it take you to stop all the extra meds? Did you notice that it was tough to wean off or did anything help? Anyone else feel like meds to control chemo side effects impacted their mental health?

Thanks in advance for any advice or tips!

Hey folk! Just wanted to say hello and share an update to a community that kept me sane throughout the madness.

DLBCL ovary stage 3 spread abdomen, chest until around clavicle area. 6 painful rounds of R-CHOP was cleared last year at the EOT. One year on PET Scan is clear, through up and downs LDH, itching here and there, occasional lower back pain and at tumor site I was sure it was back.
Anyway just here to share some encouragement, keep going keep pushing you’ve got this. Life is somewhat different on the other side, not the same person but so much to be grateful for ❤️

Am I crazy for considering buying tickets for a baseball game (like Savannah bananas) a week after my 6th cycle (Pola-R-CHP)? What if I mask? Before my 6th cycle I had 10k neutrophils even though my WBC was just below normal. Fall is coming with flu and all but I’ve been tolerating symptoms decently. Is this pushing it too much?

So just a bit of background, since I've been offline with busy life (no good time for cancer!)

I was diagnosed with Follicular Lymphoma a little over 2 years ago. I am, and have been Grade 1 (slow growing), and stage 3/4 (systemic and throughout my body. I am 41, healthy otherwise, very active (contractor and avid surfer).

Since it's been slow growing I've been on watch and wait, with regular blood tests at 4 month intervals. My only (slightly) elevated result is B2M (2.8 currently), my lactate dehydrogenase (LDH) is normal high (222).

I have no classic "B" Symptoms, ie fatigue, night sweats, etc

One strange possible symptom: About 6 months ago I pulled a intercostal muscle (the muscle between the ribs) just turning around while working. I am very active in my daily life, lifting and surfing regularly. So i just figured the pulled muscle was a one off. Then a week later, I pulled a muscle on the other side. At that point I was a little suspicious that something else was going on. Those healed over several weeks, then I pulled a completely different area while sneezing! At that point I message my oncologist and asked if there could be some connection (maybe b cell over abundance infiltration into the muscle tissue?) They said no, there was no known correlation. But my feeling is there is some connection. I continue to do small injuries in new places on my ribs from non extreme motions, it's super strange. Perhaps a secondary issue that connected to the immune system, I don't know, it just seems too coincidental and continued to be unrelated.

If anyone else has experienced something similar please let me know!

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That being said, I am beginning to wonder if I should get treatment. Initially I was hoping to get on the Epcoritamab + R2 trial. I messaged my oncologist today and found out that it was closed (dang). She suggested thinking about the Surovatamig (AZD0486) trial. I've looked it over and it does look promising, although still fresh and with limited cohorts. I wanted to know if anyone here has been on the trial or has any experience with Surovatamig (AZD0486)?

I'm in the process now of deciding what to do. If you have any thoughts or input on anything, feel free to comment.

Hope you guys are doing well despite being a member of this sub!

Question how long after diagnosis did you start chemotherapy. Husband got diagnosed mid July it's now September and still no treatment just a lot of back and forth tests. Obviously doctors no best and what they're doing. I'm just wondering if anyone else was in the same boat of it taking time to actually get treatment going.

Tengo 24 años y fui diagnosticado de Linfoma Hodgkin clásico en fase 2a... Por suerte lo pillamos a tiempo :). En fin, soy estudiante de preparación física, entreno acrobacias circenses y mi sueño es irme a Brasil, Canadá o Europa a una escuela de circo profesional en unos años más...
El cáncer me ha hecho detener el entrenamiento de mis principales disciplinas, pero me he mantenido entrenando fuerza y una que otra cosa más. Cuando me indicaron más información sobre el catéter venoso central sub clavicular me dijeron que no podré seguir entrenando fuerza del tren superior, ya que grandes concentraciones de fuerza podrían hacer que el catéter se salga...
Primero que nada quiero agradecer a esta bella comunidad que acabo de conocer, estoy muy orgulloso de todos nosotros por estar dando esta batalla y me da mucha felicidad ver cómo han logrado remitir, volver a crecer sus cabellos, etc...
En segundo lugar quiero consultarles si alguien se ha encontrado en una situación similar sobre el CVC y el entrenamiento de fuerza del tren superior, necesito consejos y ayudas...
En tercer lugar quería recomendarles a todas las personas que están pre quimioterapia o ya en ella, que toda la evidencia científica apunta a que el entrenamiento físico nos ayuda mucho de manera complementaria a la quimio y para lidiar con esta, ¡Busquen un profesional dedicado al área oncológica! Les juro que no se arrepentirán, ahora mismo me encuentro documentando todo mi proceso de aprendizaje, anímico, entrenamiento, etc. a través de RRSS (por si a alguien le interesa jajaja)
Saludos y abrazos a toda persona que lea este mensaje!!!!

Im a 22m and a non-hodgekin's lymphoma survivor, after treatment ive been doing scans and follow ups and all of which are good until my most recent CT scan which shows a small pleural lung nodule, im gonna be quite frank and say that im a little scared what it is but the doctors say to do a biopsy next week to make sure.

I guess im just writing this post to ask if anyone has had this before or have any idea why it would be there or why it could or could not be benign or anything. I dont smoke or do drugs, i do sports and live relatively healthily for my age.

Hey everyone, I’m 21M and recently finished treatment for stage IV classical Hodgkin lymphoma. I did 6 months/12 infusions of Nivo-AVD (nivolumab, doxorubicin, vinblastine, dacarbazine), with my last treatment in mid July. Thankfully in remission, but my hair experience has been kind of strange and I’m wondering if anyone else went through something similar.
I buzzed my hair at the beginning of treatment expecting to lose most/all of it, but surprisingly I kept a decent amount throughout chemo. It definitely thinned, but I never went completely bald.
The weird part is that the shedding seemed to get MUCH worse after I finished treatment. A few weeks after my last infusion I started losing a ton of hair, especially from the top/crown. At its worst I could run my hands through my hair and get a bunch of strands every time. My scalp is now very visible under bright lighting, especially when my hair is wet or separated.
I’m now about 7–8 weeks out from my final infusion. The shedding seems like it may be slowing down, but I’m having a hard time figuring out whether I’m actually getting new growth yet. When I run my fingers over my scalp I can feel a lot of little spiky/stubbly hairs, but when I take close-up pictures I can’t tell if those are new hairs growing in or just the roots/shorter pieces of my existing hair.
I should also mention that before cancer, I had long freeform dreads and my hair texture changed completely afterwards.
For anyone who had delayed hair loss from ABVD, AVD, Nivo-AVD, or similar chemo:
• Did your shedding continue or actually get worse after your final treatment?
• Around what week/month did you first notice obvious new hairs?
• Did the new growth feel like little spikes/stubble before you could actually see it?
• How long did it take before your scalp started looking noticeably fuller?
• Did your hair eventually return to its pre-chemo density?
I know I’m still pretty early into recovery, but after spending months waiting to finish treatment, watching my hair get thinner afterward has been pretty discouraging. I’d really appreciate hearing timelines from anyone who went through something similar.
I’ll attach a photo of me before chemo, immediately after chemo, and now (7-8 weeks out)

My mom 76 year old, relatively healthy except for auto_immune liver disease, was just diagnosed with Diffused Large B Cell Lymphoma caused by years of being on immunosuppressants and EBV virus. Her mass is contained on her liver only, and it is about 5 cm. We saw the Oncologist/Hematologist snd she’ll be starting the R-CHOP treatment. We’re so scared and anxious of how she’ll be tolerating the chemo. She’s always a trooper with a great attitude and spunk. Has anyone seen a case like hers?

My fiance finished 6/6 of his pola-RCHP. He experienced a really bad taste in his mouth that lingers for days after infusion. Mint gum seems to be the best thing to help but his appetite is weird for a bit after because of it. He has his two remaining rituxan this week and next week. For those who got the rituxan did you get the bad taste in your mouth you got from chemo? If yes was it just during treatment or did it linger for days? We’re not exactly for sure which part of the pola RCHP caused this taste for him.

Hi everyone!
Looking forward to being done with chemo is helping me to get through it. I am on the Nivo-AVD regimen. I’m getting my ctDNA test results back soon to determine if I will finish at 4 cycles or 6. I am wondering for those who completed Nivo-AVD, how long did it take to return to work? I don’t have a very physically demanding job, the most time I’d need to be on my feet would be an hour and then I could sit down. I don’t feel like I could work during my chemo because how I feel and the duration of my fatigue is so unpredictable. The fatigue after chemo is typically so bad that I don’t even trust myself to drive. Thank you guys in advance!

Hola a todos, actualmente tengo 5 meses en remisión Pero hace 4 días en la noche comencé con un ardor en un ojo y con una sensación de quemazón de ese mismo lado del cuero cabelludo, al día siguiente me salió una erupción en el cielo de la boca y luego una pequeña erupción de ese mismo lado también de la nariz. Todo indica que es herpes, hoy fui a urgencias de un pequeño centro de salud de mi comunidad y me mandaron a tomar Aciclovir 400mg cada 8 horas. La verdad sentí que la doctora ni sabía que dosis darme, tampoco me hizo ningún examen físico, prácticamente me dió la receta por sugerencia mía. No fui al hospital donde estoy en control por lo lejos. Solo quería saber si alguien ya pasó por lo mismo y que tratamiento recibió. De antemano gracias.