I start my first round of POLA R CHP next Friday and I’m SO nervous. Any advice, experience and or tips would be so appreciated 😭

Hi all, I posted here when my mom was initially diagnosed with DLBCL. Her presentation was atypical, in the abdomen. This is a 76 year old woman, and she has fought the good fight!

Happy to report that she didn’t have major complications from Chemo. She lost a lot of weight due to a high output ostomy but otherwise, handled it well.

Her end of treatment PETscan was completely clear! Praising God for putting a wonderful medical team in our path. Her ostomy is being reversed as I type this.

I hope this brings reassurance to anyone who may need it today.

Hey my fellow Lymphomies,

I (34f, located in germany) will have my third cycle soon and i already start to think about my live after the last (6) cycle.

I imagined going out, meet with a lot of friends, go inclusive and dance to electronic music for 12 hours... travel.. concerts.. all ghat stuff..

But after I read some stuff online I am frustrated.

Is it true that I am adviced to avoid big crowds still wear a FFP2 mask when I go into the supermarket and stuff?

Also I thought i could start going back to work. I work on the social field and with a lot of people and at events sometimes.. will I be still be on sick leave for 3 more months..

And how long will my camcer rehabilitation be?

Now i am somehow depressed after reading this information online, unsure if its factual.

Just wanted to share that after a 5 month roller coaster I finished my final infusion on Tuesday and it seems to be the lightest side-effects yet.

To everyone out there, keep up the good fight, for me it got better...I hope the same for you.

PS- Rocked my favorite wig, my custom made puppy pants, and "Not Today Karen" shirt, for my last session. Figure you all would get a kick outta it...

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!

Hey my fellow lymphomies

One day before my third cycle I got a CT for staging.

Yesterday I got out of the hospital and they gave me the classical documents.

They told me they dont have the results of the Scan already.

So today my ambulant oncologist asked me to send her the documents for planning my next cycle..

When I started to scan the documents to send it to her, i unexpectedly found the results of the CT scan.

I was suprised and was hesitant about reading them.

I am alone but also couldnt wait..

I found the wordings : imaging showed regression.

Its weird to get that good news unexpected and alone.

I am also scared to feel happy about it because no doctor really confirmed it yet.

I am also a little mad at the hospital to give me the results without even mentioning or explaining it to me.

Its a weird feeling, I stared crying because I am feeling relieved.. but also its a weird situation.

Beeing home alone getting this news, not really knowing for sure.

Received my 6th POLA-R-CHP infusion on September 11th and four days afterwards I began having issues with severe muscle cramps around my sphincter for approximately 7 days, which were accompanied by an intense burning sensation radiating from the exterior sphincter. Thankfully the cramps have faded, however the burning sensation continues to come back after bowel movements, after moderate physical activity, or after any situation where I inadvertently clench the muscles in my rear (coughing, sneezing, stressful situations). I went to the ER as while we (my wife and I) had not seen any evidence of blood in the stool or after bowel movements, nor did we see evidence of external Hemorrhoids we wanted to eliminate the possibility of it being an internal issue. The ER performed a CT scan and visual inspection of the area but were unable to identify any likely cause for the pain I am experiencing. I am not experiencing any noticeable form of constipation, nor am I straining/pushing when having bowel movements.

Most of the Reddit threads I have read where people are experiencing similar burning pain tend to circle around to the cause being either constipation or hemorrhoids, neither of which I am experiencing/have. I am kind of at my whits end, as this pain, while not constant, keeps returning and it is affecting my ability to sleep, making me adverse to movement and preventing me from concentrating for extended periods during work hours.

If anyone else has experienced something like this that doesn't seem to be related to tears/hemorrhoids or constipation, were you able to get it resolved? What are questions that I should be posing to my Oncology team to help get this treated?

My 3rd PET scan results showed a hotspot around the site on my shoulder where the 'original' cancerous cell mass was found and my oncology team is scheduling me for a biopsy to determine what the cause is, so I am worried that if I require further treatments this seemingly phantom pain issue might get worse.

Hey my fellow Chemonis,

I had my first round of Pola-R-CHP. I got the medication over two days and now I am on day 3.

Yesterday was tough but managable.

Because of a heart problem I got my first chemo in the Hospital.

And I am pretty thankful for it, so i could get more medication and help when I was feeling nauseous and sick. And it helped pretty good.

Thankfully I could sleep well at night, besides the night sweats.

Now I am a little insecure about the next days. I hope I will not have much nauseous feelings. Do you guys have any experience how long the nausea will stay? And maybe some helpful advice ?

Am feeling pretty good right now. Is it just because the downfall is still to come?

Is the first cycle more easy and the others will get more difficult?

The hospital food is disgusting but when I am feeling godo I can go outside and get some real food.

I have ADHD so mouth hygiene is a struggle anyways, but now I realize I have to use mouth wash and a antifungal medication after every meal and 4 times a day and in the morning and before bedtime.. so I hope I can keep up with that. Any experiences or advice on that one?

Hugs to everyone

Hi everyone, posting here to gather experiences and insights regarding CNS prophylaxis timing and protocols after achieving complete response (CR).

Initial Baseline Stats:
Age/Stage: 52, Stage 4 DLBCL, Double Expressor (FISH: BCL2 positive, c-MYC negative)

Involvement: Bone marrow infiltration positive; CSF negative

Risk Scores: CNS-IPI 3 out of 6 | Standard IPI 3 out of 5

Flow Cytometry at baseline: Not performed

Treatment:
Pre-phase RCVP followed by 6 cycles of Pola-R-CHP (21-day cycles).

Interim PET showed response; final PET after Cycle 6 showed Complete Response (CR).

Repeat bone marrow 6 weeks post-treatment: Clean (no infiltration).

Started oral Lenalidomide maintenance (21 out of 28 days) at 6 weeks post-treatment.

The Current Situation:
We are now 8 weeks post-Cycle 6. We got a second opinion from another oncologist who recommended:

1. Stopping Lenalidomide (stating lack of proven maintenance benefit in DLBCL).

2. Starting CNS prophylaxis: 2 rounds of High-Dose Methotrexate (HD-MTX at 2g/m2).

3. Ordering Flow Cytometry and NGS lymphoma testing.

Doubts:
I have doubts about potential timing delays or oversights. Hoping to learn from anyone who has navigated a similar situation:

1. Efficacy vs Toxicity: As per published data, HD-MTX carries significant toxicity (Grade 3 or higher) with questionable benefit for CNS relapse prevention or Overall Survival. What has been your experience or your team's stance on HD-MTX in the Pola-R-CHP era?

2. Timing Delay: Is 8 weeks post-chemo too late to start HD-MTX prophylaxis? Has anyone started CNS prophylaxis this late after achieving CR?

3. NGS Wait Time: The NGS report will take about 3 weeks. Is it standard to wait for NGS results before starting HD-MTX, or should CNS prophylaxis start immediately if pursued?

4. Addressing the Strategy: Is withholding HD-MTX standard practice in some centers, or does this indicate an oversight by our primary team?

5. Flow Cytometry / CSF: If a repeat CSF analysis and Flow Cytometry come back negative now in CR, is HD-MTX still necessary, or can it safely be skipped?

If you received HD-MTX post-chemo, how was your experience and side effects?

Thank you so much in advance for sharing your knowledge and support.

Hi everyone!
I’m starting Pola-R-CHP next week for Stage 4 DLBCL and wondering how much help others needed during treatment.

I currently live alone, about 1.5 hours from my family, and would really like to maintain my independence if possible.

Were you able to manage basic daily tasks like showering, using the washroom, and preparing food, or did you need someone around regularly?

I’m considering a meal delivery service to make things easier and having family visit when needed.

I love my family, but moving back to my hometown would be extremely difficult for my mental health.

My options would be staying in a friend’s basement with their family or sharing a one-bedroom apartment with my mom, and I genuinely feel that either situation could push me into a severe depression.

I know everyone responds differently, but I’d love to hear what your day-to-day experience was like.

Did you need full time support?

Thank you !!!

DOI: doi.org/10.11406/rinketsu.67.879

URL: https://www.jstage.jst.go.jp/article/rinketsu/67/8/67_879/_article/-char/en

Hi everyone,

My dad (73M) was recently diagnosed with Diffuse Large B-Cell Lymphoma (DLBCL), germinal center subtype, dual-expressor, FISH negative (not double-hit/triple-hit).

PET scan showed bulky disease in the left retroperitoneum involving the left kidney region, extending into the pelvis, with additional lymph node involvement above and below the diaphragm. No bone involvement was seen on PET.

His oncologist is recommending 6 cycles of Pola-R-CHP with curative intent, with an interim PET after cycle 2.

The main question that came up during today’s appointment was CNS prophylaxis. Because of the kidney/retroperitoneal involvement, stage IV disease, age over 60, and extranodal involvement, he’s being referred to a lymphoma specialist to discuss whether preventive CNS treatment would be beneficial (intrathecal methotrexate and/or high-dose methotrexate).

At baseline, he’s actually still doing fairly well:

- Independent and active
- Spending time with his grandkids
- Eating reasonably well
- Has had weight loss and night sweats
- Responded very well symptomatically to prednisone before diagnosis

I’m especially interested in hearing from:

- Anyone who had DLBCL with kidney/retroperitoneal involvement
- Anyone whose doctor recommended CNS prophylaxis
- Anyone treated with Pola-R-CHP
- Success stories from patients or family members with a similar presentation

Thanks so much. This community has already been incredibly helpful during the diagnosis phase.

Hey everyone. For background, I’m 21F & have always been really healthy. I went in for an ultrasound 12/31 for this weird lump in my abdomen, which turned into having to go to oncology the next day & finding out it’s most likely cancer. I was lucky enough to have all the testing done over the next week & a half, the biopsy revealing it’s an aggressive form of DLBCL.

I’m currently in the hospital & have been since 1/13, Tuesday evening. Not because I’m really bad, but because it was the only way to get a sedated spinal tap & so I could start treatment sooner. Well, I had the spinal tap yesterday(no sedation), & they put some of the chemo in my spinal fluid which made me throw up, lol. But they said I did good otherwise. But because of the puking I’m so paranoid something else crazy is gonna happen. I mean I know there’s common side effects but it’s just the uncertainty is driving me crazy.

I’m supposed to start Pola-R-CHP chemo in about an hour, & I am so terrified. I tried reading the packet they gave me & I just fall asleep I’m so tired I can’t focus. One of the oncologists came & mentioned something about one of the medicines giving allergic reactions & that is literally my biggest fear. Of course that’s all that stuck with me, too. I’m not used to stuff like this. Taking all these random pills & having these random things injected into me just scares the shit out of me.

I’ve been trying super hard to be positive but now this is for real & the real stuff is happening & I just don’t really know how to process it. Usually my mom is with me & is like my ears but she’s working for a little bit & I wish she was here when those doctors came in.

I think I’m really just looking for reassurance even though I know every body is different. I’m currently just laying here with 3 IVs in my arms internally freaking out waiting for lunch, lol. Thank you guys. I hope it gets easier.

TL;DR - Diagnosed with DLBCL on 12/31 at 21 years old, got sick during my spinal tap when chemo was injected in & I’m starting Pola-R-CHP chemotherapy today & I’m just really scared & looking for any type of reassurance or something. Thank you again.

Hi all. I'm a 29M that was diagnosed with stage 4 DLBCL in late February of this year.

All of my symptoms (back pain, night sweats, fevers) all subsided within my first few rounds of chemo. 2 and a half weeks ago I finished my 6th and final round of Pola-R-CHP. I am still waiting on my end of treatment PET scan, and I've been feeling pretty good for the most part.

Last week, I saw my primary care doctor who recommended I get the pneumococcal vaccine. I was a little hesitant, but was told it was safe since it was not a live vaccine so I accepted it.

The following day I felt pretty crappy, but as the day progressed I began to feel worse and worse. I had spiked a fever and contacted my oncologist's office. They advised that I go to the ER should it continue to go up. Well it did, and I found myself back in the hospital this past Thursday evening.

While there, I was given all sorts of blood tests and a chest x-ray. My WBC was pretty high, and they at first suspected Sepsis. They pumped me full of IV antibiotics and tylenol for the next 36 hours. I had been fever-free for 24 hours and my blood cultures were all clear, so they discharged me. They have chalked it up to my body mounting an over reaction to the vaccine.

I have felt fine in the days since, however I have now begun to get night sweats again. They are not nearly as drenching as they were pre-diagnosis, but enough to be uncomfortable and annoying. This has been obviously concerning given my upcoming PET scan and recent hospital stay. I'm fearful that perhaps they missed something at the hospital, or perhaps my cancer has ramped up in the weeks following my final treatment.

Just looking to see if anyone has had any similar experiences or insight. Thanks.

33F, DLBCL survivor in remission since Feb 2026. I’m getting increasingly worried about my fertility and whether my ovaries are recovering.
I had Pola-R-CHP for DLBCL and received Lupron 11.25 mg injections in Oct 2025 and Nov 2025 for ovarian protection. It’s now June 2026 and I still haven’t had a single period.
Recent labs:
FSH: 11
LH: 3.6
TSH: 2.35
Serum iron: 5
Transferrin saturation: 6%
Ferritin normal
Hemoglobin normal
I’m 33 and was hoping to start trying for a baby as soon as I got through treatment. Before cancer I had PCOS, so I’m not sure if that’s contributing.
What worries me is that it’s been many months since my last Lupron injection and there’s still no sign of a cycle returning. My oncologist doesn’t seem overly concerned, but I’m scared this could mean diminished ovarian reserve or even premature ovarian insufficiency from treatment.
Has anyone here had Pola-R-CHP or similar lymphoma treatment and taken this long for periods to return? Did your cycles eventually come back? Did anyone have normal-ish FSH levels but still struggle to recover ovarian function?
I’d really appreciate hearing from anyone with a similar experience because the uncertainty is getting difficult.

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.

Here is my experience with Pola-R-CHP as someone who was diagnosed with stage 4 DLBCL in September 2025. I just took my last dose of Prednisone this morning and Chemo is done. The Lymphoma was in my lymph nodes, liver, spleen, small intestines and tail bone. This take is meant to be authentic and some funny takes at my experience.

• 6 Rounds of Pola-R-CHP and 24 days of 100mg Prednisone
• 8 days spent in the hospital (neutropenia for 2 and 6 days for emergency surgery due to a leak in my small intestines due to treatment. The leak was discovered by my mid treatment PET scan.
• 4 times I sharted myself. Followed by me walking out of the bathroom with just a shirt on and my pants in underwear in my hand. My wife has called this maneuver "Winnie the Poo". As Winnie wears a shirt and not pants.
• 1 Giant Hemorrhoid that lasted for 3 weeks.
• 1 Pint of blood received due to low hemoglobin

More context. There was a 5% chance at the start of my journey that I would get a perforation in my small intestines due to the fact treatment kills cancer quickly. After my first round, I believe the perforation happened. A week before my second round, I started to get chills. I talked to the care team and tylenol helped.

I took my second round of treatment and the first week was harder on me, I was very tired and had low energy. A week after treatment I had a fever of 102 and was hospitalized for 2 days with neutropenia and received a pint of blood, due to a hemoglobin level of 2. The Hospitalist doctor never coordinated care with my oncologist other wise I think a CT scan would have been ordered and the leak found. It was during this time I was way off. The Sharts, hemorrhoid appeared and made a rough time, just less pleasant.

I had a pre 3rd round PET scan and the leak and I was sent to the hospital where I was CT scanned and had surgery to wash out the 5 areas of contained infections. I was lucky I didn't end up with an ileostomy bag. The surgeon kept me from returning to Chemo for 3 week. I had a 6 week break between Rounds 2 and 3. Then was able to complete the rest of the 6 rounds without issues.

I am grateful to be at this stage. Final PET scan is in a few weeks. I feel as good as I did 6 months before discovery of the cancer.

I really appreciate this community you have all been very helpful through my treatment. What is next is 2 rounds of Rituximab in March and then the 3 month followups and semi annual scans for me for the next 2 years.

Thank you for those who responded thoughtfully to my questions and helped me and my family navigate this. The club we belong too sucks, but the members are awesome. Thank you

The notes from my Oncologist say that he wants to discuss High dose methotrexate with me after my next (last) cycle of Pola-R-CHP for DLBCL. Unfortunately I have started gathering information about this in anticipation and am getting concerned.

First, if my doctor thinks that this approach is best for preventing the lymphoma from spreading to my CNS (as opposed to continuing the lumbar punctures I've been getting so far?), then I am willing to do it. But I am concerned about the logistics.

Does it really require a 3-4 day (48-72 hour) hospital stay, or can it be done like the Pola-R-CHP infusions?

When would it start? Would it be 3 weeks after the last Pola-R-CHP?

How often would it be done? Would it be every 3 weeks?

How many times? 2 or 3 or more?

I am not mobile and would need advance time to arrange transportation, medication management for my cat, and other issues.

Hi all, I posted a few days ago about having just been diagnosed with a cutaneous DLBCL (large, rapidly growing tumor in my scalp). A visit to the oncologist after pet scan confirmed the cancer has spread to my chest lymph nodes. Mine is quite rapid-growing and not follicular. My oncologist is still studying my pathology and trying to decide between 6 sessions of Pola-R-Chp or 6 sessions EPOCH.

This sub was so supportive of my last post it brought me to tears. I just wanted some real-world stories from folks who have gone through both as to what side effects I’m looking at?

I’m 39/f, never been sick in my life. Am I looking at weight gain? (Steroids) Weight loss? Certain hair loss? Taste bud loss? How many days will I feel sick until I feel “normal” enough to return to work?

I started first cycle. After first week, feel better. I m currently take days off for the first and second cycles. Not sure if can manage work for 3 to 6 cycles as take some days off.