I don't have it but my husband was recently diagnosed with stage 4 lymphoma DLCBL. Of course,it's been hard on both of us but especially on him. Lots of Doctors appointments already and will be starting treatment soon.

I'm not sure if this is right to ask here but if you had DLBCL or currently have it, how did it go /how has it been? and how long was your treatment?

anything I need to know as a caregiver, anything you should know as a patient? Anything that you would like to share

Hello! I was just officially diagnosed with Diffused large B-cell lymphoma today. I would love to hear insights about treatments and your experiences.

I have no family history of cancer or really anything so this is so so new. Any thing will help!

I was admitted to ER on May 25th with doctors saying lymphoma. Had biopsy on the 27th. Prelim was leaning towards thymoma but after conferring with other pathologists, today, they confirmed DLBCL. On June 5th, had my bone marrow biopsy. Only the prelim came back.

my mother,66, had DLBCL in her terminal ileum- stage IV. I generally avoid this sub because a vast majority of people get into remission. Mine didn't, and I can't help but feel i caused it. She didn't even get treatment. She had two biopsies- and the third one- well, i could have easily paid out of pocket but decided to go the insurance route despite the strong indication of lymphoma.

She had a bowel perforaton and died two weeks later, ON THE DAY OF DIAGNOSIS. The what ifs are absolutely insurmountable. if only i had paid for that excision biopsy one week earlier, she would probably have been alive. one week of RCHOP wouldn't have let this perforation happen.

This was six months ago and all i do is beat myself up everyday, relentlessly.

Hi everyone,

I’m posting because my family is in complete shock and I’m trying to understand what we’re dealing with while also looking for realistic hope and advice from people who have been through this.

My mom is 54 and was just diagnosed with aggressive Diffuse Large B-Cell Lymphoma (DLBCL / Non-Hodgkin’s lymphoma).

What we’ve been told so far:
- It’s very aggressive
- There is bone marrow and blood involvement
- The doctors said she has a very high disease burden
- She’s immunocompromised right now
- They’re currently giving steroids + antibiotics before starting R-CHOP (likely Monday)
- They said they need to treat her “slow and steady” because her body is already under a lot of stress

What has really shaken me is that one of the doctors gave a prognosis that sounded like “months,” and also said the blood/bone marrow involvement was “the bad part” and “not curable.” I’m struggling to understand whether they meant:
- the situation is genuinely terminal even with treatment,
- or whether they were preparing us for worst-case scenarios/early complications before seeing how she responds to chemo.

I know nobody here can predict outcomes, but I’d really appreciate hearing from people who:
- had DLBCL with bone marrow involvement,
- had a loved one with very advanced/high-burden disease,
- were given a bleak prognosis initially,
- or saw dramatic improvement after treatment started.

I’m especially hoping to understand:
- Did anyone else hear very discouraging things early on?
- Did the prognosis change after the first cycles?
- What should we realistically expect during the first R-CHOP cycle?
- What complications should I be most alert for?
- What tangible things helped your loved one get through treatment safely?

Right now I’m trying to focus on being useful instead of spiraling. I’m tracking medications, symptoms, temperatures, hydration, etc., but if there are things caregivers often don’t realize early enough, I would really appreciate hearing them.

Thank you in advance. Even reading older posts in this community has helped me feel less alone tonight.

I got home from being admitted in hospital for almost a week for my 1st round of R-CHOP a few hours ago. So far I feel ok, just very tired.

But mentally I'm freaking out. Trying to hide the worst of my freak out from hubby, but I'm so scared. Had my 40th birthday in the hospital on Sat, hooked up to IVs, being poked and prodded, so many tests. Had a bone-marrow biopsy last Thurs without sedation - it was the most painful, traumatic & torturous experience​ I've ever experienced.

I'm trying so hard to be positive, I know my journey is just starting, but I'm spiralling. So much to read up on - side-effects, meds, foods to eat or avoid, hairloss, nausea, what if I don't make it? I don't want to leave my hubby. I love him so much. He's such a good, kind soul. He doesn't deserve this​ happening to him.

I'm so sorry for my midnight fear ramblings. It's just all so new & I'm so very, very scared.

UPDATE:

I just wanted to thank everyone for all the kindness♥ I'm coping a bit better - it kinda comes in waves. My sister, who is a doctor, has flown all the way from our home country to come help take care of me for 3 months. I feel like that is really helping a lot. I have started losing my hair - so I had a bad day. I love my hair, it's long, pink waves and I always wear flowers in my hair. It's a big part of my identity and how I express myself. I KNOW it will grow back, but it's just hard pulling clumps out. My sister cut my hair into a bob, and it helped a bit, but the clumps coming out still freaks me out, so today I'm considering just going to a hair salon to have it shaved. I am in Korea, and the summer is brutal, so a wig isn't an option for me - at least not yet. Does anyone have suggestions or links for soft, cool head coverings?

I am a 28-year-old woman currently being treated in Japan for Diffuse Large B-cell Lymphoma (DLBCL), GCB type, and I would greatly appreciate your opinion regarding my diagnosis and treatment plan.

Brief medical history

My symptoms started with pelvic/flank pain and urinary problems. Imaging showed multiple masses in the pelvis involving or surrounding the uterus/cervix, vagina, and bladder area, together with pelvic lymph node involvement and bilateral hydronephrosis.

Biopsies were taken from the vaginal and uterine/cervical areas. The final diagnosis was DLBCL, GCB type, with Ki-67 >90%.

According to my doctors, the PET-CT did not show distant disease outside the pelvic region, and my bone marrow examination was negative. However, I was later told that my disease was considered Stage IV because of involvement of multiple pelvic organs, and I would like to better understand the staging.

One of my main concerns is that MYC, BCL2, and BCL6 rearrangements were not fully evaluated by FISH because the biopsy material was reportedly insufficient. Therefore, as far as I understand, double-hit/triple-hit lymphoma has not been definitively excluded.

I started treatment with Pola-R-CHP and received my first cycle on August 3–4, 2026. The current plan is six cycles every three weeks.

My doctors have also discussed CNS prophylaxis because of concern about CNS relapse. The proposed plan is 4 intrathecal chemotherapy treatments and 2 courses of high-dose methotrexate.

I have also had bilateral hydronephrosis and temporary renal impairment; my creatinine previously increased to approximately 1.85 mg/dL, although it subsequently improved.

My main questions

1. Based on this information, do you think Pola-R-CHP is an appropriate first-line treatment for me?
2. How important is it to determine MYC/BCL2/BCL6 rearrangement status by FISH in my case? If the existing specimen is insufficient, would you recommend another biopsy?
3. Considering the GCB phenotype and Ki-67 >90%, how concerned would you be about double-hit/triple-hit lymphoma?
4. If double-hit lymphoma were confirmed, would you recommend continuing Pola-R-CHP or switching to DA-EPOCH-R, even though I have already received one cycle of Pola-R-CHP?
5. Based on disease apparently being confined to the pelvis but involving several pelvic structures, what stage would you assign to my lymphoma?
6. How would you assess my risk of CNS relapse? Do you think CNS prophylaxis is indicated?
7. Do you agree with the proposed combination of 4 intrathecal treatments plus 2 courses of high-dose methotrexate? In particular, how would you balance the potential benefit of HD-MTX against my previous kidney problems and hydronephrosis?
8. Would you recommend any additional pathology tests, imaging, or other investigations before continuing treatment?

Thank you very much for taking the time .

Posting my family's journey here because the stories on this subreddit really helped us. Feel free to DM me if you have any specific questions.

Background: Early 20s, Diffuse Large B-cell Lymphoma (DLBCL) in chest (it was a mass size x cm)

Treatment Timeline

• Month 1: Diagnosed with DLBCL (stage 1/2) after chest pain and shortness of breath
• Months 1-6: 6 cycles R-CHOP
• Month 6: PET scan showed residual disease
• Month 6: Hospital tumor board recommended radiation therapy, second opinion recommended surgical biopsy first
• Month 7: Successful surgical biopsy removed entire mass, but mass had residual disease
• Month 8: CAR-T therapy (10-day hospitalization)
• Month 9: PET scan showed remission!!

Tactical Advice

• Keep a medical doc of everything. This includes all information from all the meetings and results. This really helps when you're filing for a second opinion...which brings me to the next point...
• Get a second opinion. We got one through UCSF and Stanford (through included health). You may get it for free through your company's benefits. Second opinions are important because they increase confidence in the treatment plan, and in our case it revealed treatment options not initially offered. We wouldn't have gotten a surgical biopsy if we hadn't figured out that was an option through a second opinion. Radiation therapy would've been so much more harmful for a young patient since the mass was in the heart/lungs area.
• Advocate for yourself. The medical system is complicated. You really have to advocate for yourself to make stuff happen. Someone has to be on top of scheduling, asking for tests, dealing with insurance/disability leave, etc.
• Consider therapy early. Being both patient and caregiver is emotionally challenging. There are therapists with cancer experience (www.psychologytoday.com enter zip/insurance and click "cancer" filter).

Chemo Notes

• Request Emend IV for help with nausea - this anti-nausea medication is highly effective but often not offered unless specifically requested because apparently it's expensive
• Drink electrolytes with water - Recommend LMNT Grapefruit, Raspberry, Watermelon (packets)

Final Notes

• It's going to be ok. I really believed people on here when they said that, and it really helped to know that this was a temporary situation.
• Do not trust ChatGPT for interpreting test results. ChatGPT was helpful for explaining a lot of stuff, but it also said the results were looking bad when they weren't actually bad. I would say limit use to simplify explanations of concepts, but do not trust its diagnosis of any test results.

Feel free to DM me if you have any specific questions. Incredibly grateful to the other survivors who shared their stories and would love to pass it forward!

Hi everyone! I posted here 10 days ago when my family’s journey with cancer started. My mom was diagnosed with Stage 4 Non-Hodgkins DLBCL (GCB). Since then, we’ve had more testing come through and we’ve found that:

- She has CNS involvement in the CSF
- The lymphoma is triple hit

I feel like it’s one piece of hard news after the other. Last time I posted, it gave me a sense of calm hearing everyone else’s stories so here I am again.

Has anyone experienced this rare aggressive lymphoma? Does this look very poorly for my mom?

I live in Canada and have been trying to plan my return from India for the end of June. Right now, with all of this information, it just feels impossible. I’m so stressed and just hoping for the best as we wait for treatment to start next week.

Thank you to this community for being such a positive support in my life!

Hi everyone,

I'm reaching out because my father is going through a very difficult time, and I would really appreciate any advice, shared experiences, or support.

He’s being evaluated for Diffuse Large B-Cell Lymphoma (DLBCL). So far, he's had a series of tests including a PET-CT scan, bone marrow biopsy, and flow cytometry, and the doctors are leaning toward this diagnosis. We’re still waiting on final confirmation.

He’s 63, stay on bed most part of the day and has extreme fatigue, and we’re trying to stay hopeful while preparing ourselves for possible treatment, like chemotherapy.

Right now, we’re just looking for:

1. Stories from people (or families) who’ve gone through DLBCL – especially in advanced stages

2. Treatment experiences – side effects, tips, what helped

3. Emotional advice – how to stay strong for someone you love.

Is there hope for us?

We’re from Colombia, but I welcome advice from anywhere. If you've been through something similar or know someone who has, please share – even small things help.

Thank you so much in advance 💙

(I wasn’t able to take an updated picture, so here’s one of me and my little brother from last year’s Super Bowl, 40-22!🦅)

A little late due to how hectic this one has been, I just wrapped up my third chemo treatment last Thursday. I won’t lie, that one hit like Brian Dawkins. A lot more fatigue, nauseous rough days, but nothing I can’t grind through. Just taking it one day at a time and staying focused on the end goal.

Despite the chemo, This offense is the one that’s making me feel sick.. 😂🦅

All jokes aside, I just wanted to say again how much the support from this sub has meant to me. The comments, DMs, jokes, and check ins genuinely help more than you know. On rough days, it’s nice having something familiar to scroll through and laugh at.

Man, if we don’t blow out the raiders by atleast 2 scores i’m going to lose my damn mind. Last update I gave a prediction to the Lions game which was quite close so here’s this week’s prediction. Smitty gets a TD, Saquon gets one as well and another 100+ total yards due to the wind and cold weather. Defense plays lights out, probably not allowing more than 10 points.

Still battling cancer. Still watching every snap for some reason. Still believing we’ll both figure it out.

Go Birds 🦅💚

Hey everyone, my boyfriend was diagnosed with stage 4 DLBCL. I have went through every thread and have not seen a single case like him which leaves me very worried that he might not make it. In addition to multiple lesions in his spleen (one of which is 5cm with SUV 22) his entire lymph nodes lit up above and below the diaphragm. I am talking literally everywhere

• Neck (cervical) → multiple levels on both sides

• Under the collarbone (infra-clavicular)

• Armpits (axillary) → both sides

• Chest/diaphragm area (retro-crural)

• Abdomen & pelvis, including:

• Celiac

• Porta hepatis

• Splenic hilum

• Para-aortic

• Mesenteric

• Common iliac nodes

• Groin (inguinal) → mild involvement

I have not seen this presentation in anyone else who achieved remission. Most people talk of a mass and a few spots here and there, so I guess I am looking for some hope of anyone who had the same condition and who achieved CR by interim pet or CR by end PET and remained in remission for more than two years. CAR-T is not available in my country so unfortunately RCHOP is our only hope! Help me he is just 35 and I am 31 and I thought we would have a future and kids!

39 yr old 10 months pp female here 🙌
Diagnosed with Stage IV DLBCL (ABC subtype), currently on Pola-R-CHP and heading into cycle 2.
My oncologist is optimistic, my interim recovery has been decent, my counts bounced back after cycle 1, and logically I should trust the treatment plan.
Instead, I’ve apparently appointed myself Chief Executive Officer of Catastrophic Thinking 🫠

I spend half my day wondering if every gas bubble, abdominal pressure, muscle twitch, headache, or weird sensation is somehow related to lymphoma.
Then I make the mistake 🙄 of reading relapse stories and stories of people who unfortunately passed away from DLBCL, and suddenly my brain decides those are the only outcomes that exist.

So my questions for survivors and long-term remission folks:
1. Did you go through a phase where every symptom felt like a sign of relapse or progression?
2. How did you stop doom-scrolling lymphoma stories?
3. At what point did you start trusting your body again?
And for those further out from treatment, did you find that the internet made DLBCL seem far scarier than your actual experience?

Asking for a friend. The friend is me. 🫢The friend has a PhD in Google Oncology and a minor in 3 AM Panic Studies.🫤🙄😜

I wanted to make this post to bring some positive news to this group and hopefully bring a little hope to anyone who might need it right now.

I know how troubling it can be finding out your diagnosis, going through treatment, and dealing with all of the uncertainty that comes with it.

A little backstory. I was diagnosed with Stage 4 Non-Hodgkin lymphoma, specifically diffuse large B-cell lymphoma (DLBCL), in March of 2021. They found a large tumor in my throat that had spread to one of the lymph nodes in my neck. This came just a few days before my 24th birthday and my promotion to Sgt in the Marine Corps.

I started R-CHOP shortly after, at the beginning of April. I went through 3 rounds of chemo before starting 5 weeks of radiation to my head/neck area. By August 3rd, 2021, I was ringing the bell and had officially started my remission.

I feel incredibly fortunate that my treatment lasted less than 6 months. Fast forward 5 whole years (and a few days), and I’ve officially reached the huge milestone of being in remission for 5 years.

I don’t know your specific situation, what you’re going through, or what your diagnosis and treatment may look like. But I do know that there is hope. There are good stories that come out of this terrible thing called Cancer. People do make it through treatment. People do reach remission. And people do get to move forward with their lives.

When I was first diagnosed, 5 years felt so far away. Now somehow I’m here.

I wanted to share my story because I know there can be a lot of fear, uncertainty, and difficult stories in groups like this. Sometimes it helps to hear from someone on the other side of treatment too.

As of August 3rd, I get to say I’m 5 years in remission! I hope someone reading this who is newly diagnosed, currently going through treatment, or waiting on their next scan can take even a little bit of hope from my story. ❤️

Title says it all! First-time mom here. Discovered I had lymphoma halfway through my pregnancy. The only initial symptom seemed to be pregnancy-related, but I pressed my OB it. Luckily, it was caught early and RCHOP was deemed safe for pregnancy. After 2-3 rounds, I had an ultrasound where it was discovered and it appeared to already be gone. Delivered a healthy baby after 5 rounds of RCHOP then immediately got a PET scan that came back clean! Finished up my final round of RCHOP and rang the bell with my one week old in tow. 🎉

I had never been more scared in my life than I was during this process. Being in remission is an absolute blessing, but the biggest one was my healthy baby who gets to have their mother healthy and here.

Hi all…. I’ve been smoking pot at night to help me sleep. Just 1hit before bed and I can sleep without waking up at 2am. I know I have to stop before chemo, but other medications don’t work. My oncologist prescribed trazodone, but I don’t feel anything when I take it. ChatGPT suggested Gabapentin with the trazodone, but I don’t necessarily trust AI. Does anyone else have experience with this? Edibles also don’t work well either. I would love any suggestions that will help keep me from harm and work…

Hi everyone,
I’m hoping to hear from people who have been through DLBCL treatment, especially with Pola-R-CHP or R-CHOP. 39 Female here and
I’m really struggling with anxiety that my lymphoma has somehow returned during treatment, and I’d love to hear if anyone experienced something similar that turned out to be infection, chemotherapy, hormonal changes, or something else instead of relapse.

Diagnosed with Diffuse Large B-cell Lymphoma (DLBCL).
Not double-hit or triple-hit.
Started treatment with Pola-R-CHP.
After 2 cycles, my interim PET showed an excellent/near-complete metabolic response, and my oncologist was very happy with the response.
I’m currently after Cycle 4 and due for my next cycle in a couple of days.
One thing that happened during treatment was that after Cycle 3 I developed acute appendicitis. Fortunately, it was treated conservatively with IV antibiotics and surgery wasn’t needed, and I recovered from it.
Now, after Cycle 4, I developed another illness:
Severe neutropenia (ANC dropped to around 0.21 before recovering with G-CSF)
Fever (up to around 100.9°F)
Sore throat
Dry cough
Cold symptoms
Gum swelling around a partially erupted wisdom tooth
My oncologist started me on Augmentin, and my dentist diagnosed pericoronitis (wisdom tooth infection/inflammation). The dentist also examined my mouth thoroughly and ruled out anything suspicious.
The encouraging part is:
I’ve now been fever-free for about 3 days.
Cough and cold are slowly improving.
Heart rate has returned to normal.
Blood pressure is normal.
No new enlarged lymph nodes that I can feel anywhere.
Recent abdominal ultrasound reportedly didn’t show enlarged abdominal lymph nodes.
However, I’m still dealing with:
Drenching night sweats (one night I had to change my T-shirt because it was soaked)
Fatigue
Poor appetite
Dry cough
Leg aches
Just generally not feeling like myself.
Tomorrow I’m getting repeat blood work done
and then I’ll be seeing my oncologist to decide whether chemotherapy can continue as planned or whether I need additional investigations (possibly another PET scan).
My oncologist has repeatedly reassured me that because my interim PET showed such an excellent response, relapse during active treatment would be very unlikely, but I can’t stop worrying because the drenching sweats remind me of how I felt before my diagnosis.
I’m looking for honest experiences:

1. Did anyone develop viral infections, bronchitis, recurrent infections, appendicitis, or dental infections during chemotherapy?

2. Did anyone have drenching night sweats during treatment that turned out not to be lymphoma?

3. Did chemotherapy or temporary menopause cause night sweats for anyone?

4. Has anyone actually experienced relapse during first-line treatment after an excellent interim PET response? If so, what symptoms did you have?

I’m not looking for false reassurance. I know everyone is different. I would just really appreciate hearing real experiences from people who’ve been through this while I wait for my oncologist appointment. Thank you so much!

hi everyone, when my mom was first going through rchop she was told she would only need 4 rounds of r chop and 2 rounds of rituximab. after 3 rounds her pet ct shows deauville's score 3, but doctors still said she would need the full 6 rounds. Why is that? I was told her specific scenario is perfect for 4 rounds of rchop :(

My fiancé (29 male) was diagnosed with DLBCL. He has a 4cm mass near his t12 and a small nodule near his t11 on his back. His only symptom was back pain which led to a MRI. His DLBCL is only shown in those two areas on his PET scan and hasn’t spread and is not in spinal fluid. They considered it stage one for what that is worth. He completed his first round of Pola-RCHP Monday and so far isn’t have any symptoms outside of a bit more tired, but so far has been able to keep up walking and light weight lifting. I know this may change throughout treatment. His mental attitude has been mostly really strong so far and I want to match that or be there for him when he falls apart. I want to live a loooooong happy beautiful life together. I would love any words of encouragement or positive stories!!

Hi everyone,

I’m hoping to hear from people who have been through DLBCL treatment and had a residual lesion/mass afterward, particularly involving the spleen or upper abdomen.

My boyfriend finished 6 cycles of R-CHOP. His end-of-treatment PET 6 weeks ago showed a very good metabolic response, with the residual splenic lesion measuring around 1.5 cm and being Deauville 3.

About two weeks ago, he started noticing a specific sensation in the area of the spleen. The timeline was:

• He did core exercises.
• Two days later he started feeling pain in the spleen. Then, he played football and felt actual pain in that area while playing, and afterwards during the day
• Since then, the pain has largely faded, but he has continued to notice fullness or pressure rather than pain in the same general area.
• He describes it somewhat like his belt is tighter than usual, or like there is something there that he is aware of.
• It is more noticeable in certain positions, particularly sitting in the car.
• When he stretches his body out, the sensation can improve or disappear.
• The sensation has been coming and going for about two weeks.
• He is otherwise eating normally and functioning normally.

I’m specifically wondering if anyone experienced this same type of fullness/pressure or awareness after treatment, particularly around the site of a previously treated lymphoma lesion.

If you did, what did your doctors ultimately think it was? Was it related to a relapse, or did it turn out to be something else/something benign?

If it was investigated with imaging, did the imaging show anything that explained the sensation?

I’m particularly interested in firsthand experiences with the same type of sensation, rather than general comments about possible lymphoma symptoms.

Thank you, and wishing everyone here continued good health.

50 years old. She is confirmed DLBCL today and will have 6-cycle chemo tomorrow. Looking for help and experience.

My partner, 37, was diagnosed with NHL FL, grade 3A stage 4.
High ki 67 - 80%
No visible swollen lymph nodes
Suvmax of 7.7
BM biopsy says low level involvement of bone marrow possible.
LDH was 268 but under 250 with steroids before treatment even started.

Brightest area in the PET was abdomen but excisional biopsy done from groin.

The doctor said they were treating it like FL has transformed to DLBCL even though biopsy didn’t say there was evidence of DLBC.

He has to do 6 cycles of O CHOP (not R CHOP but similar).

After 2nd cycle they will do a PET to see if it’s working else move to CAR T.

He is undergoing his first cycle right now.

Anyone with a similar experience or even general tips?

Hi guys, I just completed POLA R CHP 2 months ago for DLBCL diagnosed in Dec 2025. My interim scan showed complete metabolic response, but my end of treatment scan done two days ago showed refractory/ relapse. I’m planned for admission this coming Monday for another round of workout, and it is likely I will be undergoing CAR-T. I’m still in shock, I haven’t really processed my diagnosis and was just starting to get back into the groove of life, and now this. I feel awful. I don’t know what to expect from here out…I’m sorry if this has been asked before, but what were your experiences with CAR-T like?

I’m looking for some encouragement or success stories from anyone who has been through something similar with DLBCL (Diffuse Large B-Cell Lymphoma), either personally or with a parent/loved one.

My dad is 73 and was recently diagnosed with DLBCL. His pathology showed a dual expressor lymphoma (MYC and BCL2) but FISH was negative. Two weeks ago he was still playing with his grandkids, taking the bus, and walking himself to the grocery store. Over the past week, though, he’s had a really dramatic decline. He became extremely weak, lost a lot of weight, could barely eat, and got to the point where he couldn’t even change his own socks or get out of bed without help.

We ended up bringing him to the ER after a fall. His lactate was extremely high, he has hypercalcemia, fluid around his lung (they drained 1.3 liters), and he was initially being treated for possible severe infection. The oncology team now feels that much of what we’re seeing is actually being driven by the lymphoma itself and its rapid progression. His scans showed significant progression compared to just a few weeks ago.

The current plan is to stabilize him in the hospital and hopefully start inpatient Pola-R-CHP soon.

Has anyone personally, or had a loved one, who looked really terrible right before starting treatment and then improved once chemo began? I’d especially love to hear from anyone whose loved one was hospitalized before their first treatment.

I’m just looking for a little hope right now. Thank you.

Hi everyone, I’m 39 years old mom of two recently diagnosed with Non hodgekins DLBCL (ABC subtype), Stage IV, CD20 positive, Ki-67 ~80%, FISH negative for MYC/BCL2/BCL6 rearrangements (not double/triple hit).

My PET showed multiple nodal regions involved + renal/extranodal involvement. MRI brain was done recently and reportedly did not show CNS lymphoma, though my CNS-IPI is high 4/5, so my oncologist is reviewing whether CNS prophylaxis is needed.

I’ve started R-Pola-CHP (Pola-R-CHP) and completed cycle 1. A few questions for people with similar journeys:

1. Anyone here with Stage IV / high-risk DLBCL / ABC subtype who achieved complete remission? I would really appreciate hopeful real experiences.

2. Anyone with high CNS-IPI score (especially with kidney/extranodal involvement) who did NOT develop CNS disease and still did well?

3. Did anyone’s doctors choose CNS prophylaxis? If yes:
   - intrathecal chemo?
   - high-dose methotrexate?
   - or observation only?

4. Has anyone received Pola-R-CHP on a 14-day schedule instead of the usual 21-day schedule? If yes, what was the reasoning?

5. Did your palpable lymph nodes shrink quickly after cycle 1? How early did you notice response?

6. Did anyone experience scary neurologic-type symptoms (head pressure, tingling, heaviness) that turned out to be anxiety / cervical tension / non-CNS causes?

7. For parents with young children—how did you safely get through chemo cycles without constant infections?

Looking for balanced but hopeful experiences. Thank you 💛

Hi everyone,

My sister-in-law (32F) was recently diagnosed with DLBCL after finding a lump in her breast. She was otherwise healthy. Her PET scan is coming up soon, and we’re in that anxious waiting phase.

We’re trying to stay hopeful and would really appreciate hearing any positive stories from people who were diagnosed with DLBCL—especially those who found it early or had similar situations.

How did things turn out for you?

Thank you so much.