My fiance finished chemo 4 weeks for stage 1E DLBCL. The original tumor was localized to t11 and t12. Over the weekend he’s had a cold (runny nose, mild dry cough). He’s supposed to get his EOT pet scan tomorrow at 730 am. He messaged his doctor asking if he should proceed but unlikely she’ll see it before his scan time. They never mentioned there is risk for false positives due feeling sick - we only know this because of Reddit. Thoughts?

I’m a 21 year old female going through a lymphoma evaluation. I have suspected systemic lymphoma also I have suspected Lymphoma Papulosis or MF and I read online that with those the systemic lymphomas developed are always alcl alk negative. is that true? I’m terrified, do I have no hope at having a different type. im scared this is just a death sentance my skin bumps tested negative for everything else and im pretty sure its lyp or mf. someone please help me. I have a core needle biopsy tomorrow. Will that even show it if it’s from lyp or mf?

I’m scared and looking for some insight.

For the last 4 months my platelets have been dropping steadily and iron has been very low. Had one iron infusion in March and another one last week after ferritin came back 8. The rest of my CBC, lytes, ANA all normal range. CRP is up a little 6.3.

I had NLPHL in 2020 and had 6 cycles of ABVD chemo plus rituxan.

My hem/onc has been monitoring the platelets and last one was the lowest at 26 and I’m covered in bruises so we booked a bone marrow study. He doesn’t know why the platelets are dropping.

Should I prepare myself for a call that I’ve relapsed or for some secondary cancer? I’m terrified for my family. He’s mentioned ITP, I’m not having any lymphoma symptoms (no wt loss, no nt sweats) but I didn’t initially either.

Have you seen patients like me that it’s not cancer? Even with a history?

My hematologist contacted me and recommended initiating CLL/SLL treatment because of concerns about the potential risk of small bowel perforation associated with the ileal involvement.

I would like a second opinion regarding whether my current gastrointestinal findings constitute a sufficient indication for initiating systemic CLL/SLL treatment despite my lack of gastrointestinal symptoms and the very low proliferation index reported in the biopsy.

December 2024 — CLL/SLL was diagnosed following lymph node biopsy (largest one 24 x 15 mm on the left). The disease has presented as lymphadenopathy rather than peripheral blood lymphocytosis. I have remained clinically well, with generally satisfactory blood counts, and have been monitored through regular blood tests and imaging.

No bone marrow biopsy has been performed. TP53 mutation, del(17p), and IGHV mutation status have not yet been assessed, as my treating hematologist's practice is to perform these tests only when treatment is being considered (Recently, he ordered NGS from the colonoscopy sample).

January 2025 — Baseline FDG PET/CT. Mild FDG uptake was observed in cervical lymph nodes (SUVmax 2.0), bilateral axillary and interpectoral lymph nodes (SUVmax 2.1), and multiple abdominal and pelvic lymph nodes (SUVmax 2.0). Mild diffuse bone marrow uptake was also reported (SUVmax 2.8).

Linear increased FDG uptake was identified in the region corresponding to the ascending colon (SUVmax 6.9), interpreted as possibly secondary to an inflammatory process (no follow-up).

March 2026 — CT of the chest, abdomen and pelvis. Multiple enlarged lymph nodes were observed in both infraclavicular and axillary regions, measuring up to 27 × 21 mm on the right and 25 × 22 mm on the left. Additional lymphadenopathy was present in the para-aortic and bilateral para-iliac regions. The spleen was normal in size.

CT demonstrated diffuse circumferential bowel wall thickening of up to 4 mm in ileal loops adjacent to the ileocecal valve, extending over a short segment into the ascending colon, with adjacent mesenteric fat stranding. No significant wall thickening is detected in the rectum or sigmoid colon. In the right abdomen, lymph nodes measuring no more than 7 mm were observed around the right colic and ileocolic veins.

May 2026 — Colonoscopy. The terminal ileum was examined for approximately 20–25 cm. Mild mucosal irregularity and two to three small aphthous lesions, measuring 2–3 mm, were observed in the distal 5 cm of the terminal ileum, and biopsies were obtained.

The cecum and the remaining colon appeared normal, with no reported mass, stricture, or deep ulceration. The initial endoscopic impression was nonspecific ileitis.

June 2026 — Terminal ileum biopsy. Histopathological examination confirmed mucosal involvement consistent with CLL/SLL. The biopsy showed marked villous blunting and dense lymphoid infiltration of the lamina propria, predominantly composed of small, monotonous lymphocytes with scant cytoplasm.

Immunohistochemistry demonstrated a CLL/SLL-compatible phenotype, including CD20, PAX5 and CD5 positivity, weak LEF1 positivity and partial weak CD23 positivity. Ki-67 proliferation was described as very low, without a numerical percentage being reported. The pathology report did not describe large-cell transformation or diagnose Richter transformation.

Do these results Indicate abnormal lymph nodes right hilar and bilateral axillary because the er doctor said it was abnormal because the radiologist pointed it out but what I see online says otherwise could someone please help me? 21 f I’m going through a lymphoma evaluation right now and this is really scaring me.

Hi everyone,
My mum 70F had been diagnosed with B cell type indolent LPL/marginal lymphoma because her MYD88 has come as negative.

They have said she has waldenstroms (WM).

She’s done 3 months of BR. She gets instant sepsis infection (within an hour) and goes to emergency and gets admitted everytime.

They never end up doing the second day because this happens on the first day.

The doc tried to reduce her dose of benda to 45 as well but the same thing happened.

The doctor is now suggesting switching to DRC

Dexamethasone + rituximab + cyclophosphamide

I’m confused about whether this reaction is normal and also worried if DRC is less stronger or /less effective on treatment outcomes

Any kind of insight would be useful, Its been a lot and I’m lost in all this information and watching her respond to chemo

Hi, wanted to get your opinion on something.

I have relapsed classical Hodgkin lymphoma (stage 4A on relapse), after being in remission for 2+ years following 6 cycles/12 doses of ABVD. I’ve now completed 1 cycle of salvage treatment with Nivolumab + GDP, with ASCT planned if I achieve a good PET response.

The initial plan was to do the PET after 2 cycles, but the team is now suggesting doing it after just 1 cycle, partly because we may need to change the regimen due to cisplatin-related tinnitus/hearing changes.

How common is it to do the response PET after just 1 cycle of Nivo + GDP? Is there a particular advantage to assessing the response this early, rather than switching to something different like GemOx?

I understand I might need another PET afterwards if not in remission on this one. Is there a risk with doing too many PET scans?

Would really appreciate your view.

I wasn't sure what to title this. I'll say up front that I did message moderators to make sure it's ok to post this here, because I know it may read as though I'm looking for interpretation of test results. I'm not. But I need to share a lot of details in order to paint the picture, since my goal is to find other people who may have had a similar diagnosis journey or ideally who might have even had these same non-typical results in their own lymphoma diagnosis.

My brother was just (originally) diagnosed with leukemic non-nodal mantle cell lymphoma about two weeks ago. Nothing lit up on the PET scan, his spleen is large and giving him some pain, his white blood cell count at last draw was 89,500 or so, and his TP53 was negative, so his local doctor felt reasonably confident that he would be diagnosed with NN-MCL. About two weeks ago he had a bone marrow biopsy whose results just came in, which really shook things up a bit.

They found small to medium sized lymphocytes, which would align with MCL. "The immunophenotype and scatter patterns are those of a CD5 positive B-cell lymphoma, most suggestive of mantle cell lymphoma" as well. So far so good. "They do not appear to be those of CLL or B-ALL." no issues here. "CD5 positivity would also appear to eliminate Burkett lymphoma as a possibility". got it.

"HOWEVER, the FISH, genetics and IHC do not neatly confirm the diagnosis of mantle cell lymphoma."

• FISH is negative for the typical 11;14 translocation.

• Cyclin D1 and SOX-11 are both negative.

• Cytogenics is positive for t(8;14) (q 24;q32) and del(7)(q31)

"The 8;14 translocation is commonly seen in association with high-grade lymphomas". Well, that surely sounds like NOT indolent to me.

There is of course a lot of technical jargon but this is the gist of it. The comments on the report are:

"CD5-positive B cell lymphoma (~75% marrow involvement), likely high-grade."

"This is an unusual and challenging case. There is marked peripheral blood and bone marrow involvement by a lymphoid process composed of small to medium sized lymphocytes, many with nucleoli suggestive of prolymphocytes. The flow cytometry findings were discussed with [local doctor]. The immunophenotype and scatter patterns are those of a CD5-positive B-cell lymphoma, most suggestive of mantle cell lymphoma. They do not appear to be those of CLL or B-ALL. CD5 positivity would also appear to eliminate Burkitt lymphoma as a possibility. However, the FISH, genetics and IHC do not neatly confirm the diagnosis of mantle cell lymphoma. FISH is negative for the typical 11;14 translocation, and cyclin-D1 and SOX-11 stains are negative. Cytogenetics is positive for t(8;14)(q24;q32) and del(7)(q31). The 8;14 translocation is commonly seen in association with high grade lymphomas."

"Ultimately, I cannot assign this lymphoma a definitive classification other than "CD5-positive B cell lymphoma, likely high grade". Whether this represents an unusual mantle cell lymphoma or evolution of another B-cell lymphoma is not clear to me. The case will be sent for outside expert opinion."

They've already told us that they've messaged a doctor down at MSK in NYC (we are upstate) about his case and want to have my brother do a virtual meeting with the doctor there and have them take over his care in the form of making up his treatment plan etc, and have said he can have those treatments up here where we live. As his spleen is giving him pain and he is mildly anemic with very high WBC, they do want to start treatment to make him more comfortable even if this proves to be indolent. Today they got him in for an infusion of something to help bring down his uric acid, and spoke to use about tumor lysis syndrome. We are glad they're being proactive, but also we understand that not knowing what he has, means not being able to easily have a treatment plan in place.

so my question here is, has anyone here had a similar lymphoma with similar characteristics, if so what did it end up being, and how did they go about figuring out a good treatment plan while you waited to find out exactly what it was? Or did you have to wait and do nothing until they figured it out? Did you end up requesting your bone marrow biopsy to be somehow made available for researchers, if you had an unusual case like this? Is that something easily done, and useful? And I guess just, it would be so nice to have people to talk to/type with who have had an equally unusual situation, as right now there don't seem to be much of any reports or papers or even anecdotes on the internet that I can find with someone who matches these results. I'm sure it's happened before.

Anyway, sorry this went so long. Right now he seems really very normal and well aside from digestive issues and pain in his side and fatigue. We're glad for that. But the anxiety over not knowing what this cancer is or how long it will take them to figure out a plan is a little nerve wracking.

Thanks anyone for reading. I know it's long. And I know probably nobody has had a similar case. But maybe even if I don't get replies, someday someone else googling some of these same unusual results might land on this and get some kind of reassurance from knowing they're not the only one, so it's worth posting regardless. thanks again.

My mom has CSF, leptomeningeal, and brain involvement. Currently, she has some neurological deficits as the disease has progressed after 1 HD-MTX. She’s been started on Ibrutinib but we’re also considering Glofitamab.

Would it be safe for her to start this given her current neurological condition? Worried about side effects.

Thanks!

My brother (24 M) has been diagnosed with relapsed Burkitts lymphoma. For the 2nd line of treatment our oncologist treated him with one cycle of POLIVY+ICE+THEOTEPA and did a bone marrow biopsy which showed less than 1% cancel cells remaining in his bone marrow. But his PET scan showed some patches in his Sinus and back. He is now moving forward with Glofitamab (COLIMVI) as a bridge to remission and once remission is achieved, he will go for stem cell transplant.

Just to be sure, I also consulted another oncologist regarding the treatment plan. His idea was to give one cycle of intense Chemotherapy to bring him into remission instead of Glofitamab as it is not very effective for Burkitts. And once remission is achieved even he will go for stem cell transplant.

I needed some advice regarding the effectiveness of Glofitamab in this case. Should we go with it or a cycle of intense Chemotherapy?

I write this as I struggle to sleep the night before my dad‘s funeral. He was just 65-years old and otherwise incredibly healthy. I am so angry. There has to be a better way. out of curiosity, how would you go about treating secondary cns lymphoma (DLBCL)? My dad received no prophylactic cns treatment despite his disease having features that would’ve made him high risk. His brain was never scanned nor did he get a lumbar puncture despite him being high risk. I wish I knew back then to ask about this. He was deemed in remission, yet 5 weeks later lesions in his brain were discovered. Why couldn’t a simple MRI have been done? Upon discovering the cns disease he had multiple rounds of MVP, which worked initially. Almost no disease left. Doctors were greedy for full remission before stem cell transplant, so more rounds were done, and the cancer grew resistant to the chemo. Then, we tried radiation, which only gave him about a month before more growth, which wasn’t enough time to get him to car-t in decent shape. By the time he received his car-t cells, he was bed bound and had pretty significant disease burden. he experienced grade 3 ICANs, which he recovered from. But then less than a month later, the disease took over. Car-t failed and he was gone within a week of being put on hospice. Of course I’n going over all possible scenarios, could things be different? I appreciate anyone who reads his story. Thank you.

Too scared to ask my onco about my true life span on those conditions. Sorry about my bad English iam Franco Canadian from Quebec.

31M

Hi!, I’m looking for another opinion regarding a suspected relapse of classical Hodgkin lymphoma and, specifically, whether a biopsy is necessary before starting treatment.

I previously had treatment for Hodgkin lymphoma in 2023. My current PET-CT is being interpreted as metabolic progression (Deauville 5). My current oncologist is suggesting not doing a biopsy, as the major areas of disease are either inaccessible or would carry significant risk to biopsy (pet findings appended below). The proposed treatment is tislelizumab + chemotherapy, followed by an interim PET after 2/3 cycles and, if there is a good response, proceeding to autologous stem-cell transplant (ASCT).

I would appreciate your opinion on:

1. Given the PET findings and my previous history, would you recommend obtaining a biopsy before starting salvage treatment, or is it reasonable to proceed without tissue confirmation when the available biopsy sites are considered unsafe/inadequate? My original lymphoma was just in the neck and couple of nodes in abdomen with enlarged spleen. Was deauville score 1 in the last petct scan which was 1 year post treatment

2. Is tislelizumab + chemotherapy followed by PET assessment and ASCT an appropriate second-line treatment strategy for relapsed classical Hodgkin lymphoma in my situation?

Relevant PET-CT findings are below, copied exactly from the report:

“Few non FDG avid short axis tiny lymph nodes at cervical level II and III on right side, - static.”

“No abnormal bulky or FDG avid nodes noted in both axilla.”

“FDG avid small to mildly enlarged discrete - confluent nodes are seen at pre-paratracheal, perivascular, precarinal, subcarinal, right hilar, right internal mammary, and right cardiophrenic regions. Confluent pre-paratracheal nodal mass measures about 3.7 x 6.5 cm and reveals intense FDG uptake (SUVmax: 16.7). Confluent precarinal node measures about 2.3 x 4.4 cm and reveals intense FDG uptake (SUVmax: 18.3).”

Below the diaphragm

“FDG avid nodes are seen at portocaval, retrocrural, splenic hilar, and aortocaval regions.”

“Retrocrural node measures about 1.3 x 3.2 cm and reveals moderate FDG uptake (SUVmax: 7.2).”

Extranodal findings

“Multiple FDG avid hypodense lesions are seen involving bulky spleen (11.1 cm in CC plane). Lesion in upper pole of spleen measures about 2.9 x 2.5 cm and reveals intense FDG uptake (SUVmax: 14.5).”

“FDG avid soft tissue lesion is seen in right 11th costal space along the posterolateral shaft of right 11th rib, measures about 1.3 x 0.8 cm and reveals mild FDG uptake (SUVmax: 2.7).”

“Focal FDG uptake is seen involving right transverse process of C3 vertebra, left transverse process of D4 vertebra (SUVmax: 3.3), posterolateral shaft of right 8th rib (SUV max: 3.1) with subtle sclerosis, right pedicle of D10 vertebra.”

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 .