r/lymphoma

Just curious.

I was just diagnosed with PMBCL lymphoma about a week ago. Two of my parent’s siblings had blood cancers: follicular lymphoma and leukemia.

Was wondering how many of us here have these running in our families.

Edit: sorry about the shitty club we all belong to.

I documented my story! I hope this gives good information on what ALCL ALK+ is like, and maybe some encouragement for anyone in general and also anyone who is a Christian. I'd love to hear thoughts and talk!

I am from Dallas, Texas, studying Bible and Theology along with Philosophy, Politics, and Economics while working as a Director at Chick-fil-A. My life was centered around college, church, friends, basketball, and normal routines until the end of my spring semester in 2025, when everything changed.

On May 12th, during finals week, I was sitting with friends watching an NBA playoff game when my right leg suddenly started convulsing. The shaking spread up the right side of my body and reached my head before stopping. I stayed conscious the entire time, but I was terrified. I later learned this was a Jacksonian March seizure.

I was taken to the emergency room, where an MRI revealed four tumors in my left frontal lobe. Within days, I went from finishing college assignments to having brain surgery, relearning how to walk properly, and receiving a diagnosis of T-cell lymphoma in my brain. Forgetting how to walk with my right leg when they took the first tumor out through surgery is the wildest story I get to tell people.

After further testing and a second opinion from MD Anderson specialists, I received my specific diagnosis: Anaplastic Large Cell Lymphoma (ALK-positive). It was an extremely rare cancer with very few documented cases, meaning there was not much history to guide treatment. Thankfully, my doctors at Baylor developed a plan involving only aggressive chemotherapy.

My first round of chemotherapy began in June. I received high-dose methotrexate and cytarabine. The treatment was effective, but complications with my seizure medication caused my liver numbers to rise dramatically. After a liver biopsy and switching anti-seizure medications, I was able to return home.

Shortly afterward, I experienced another major setback. A reaction from my new second seizure medication caused severe nerve pain in my legs, leaving me barely able to walk. I returned to the hospital, but during that same visit over a couple days I received incredible news: my post-first round check MRI showed a 99% reduction in visible cancer in my brain after only one round of chemotherapy (it was predicted to be around 60%). That day also brought another diagnosis: temporary steroid-induced diabetes caused by Dexamethasone. It was overwhelming, but thankfully it was not permanent and eventually resolved after stopping the medication.

Soon after on my 21st birthday, instead of celebrating with a party, I shaved my head. Watching my hair fall out was one of the most humbling parts of chemotherapy, but it was also when I fully accepted the battle ahead. Friends and family supported me, and some even shaved their heads with me.

Rounds two and three of chemotherapy went much smoother. Scans continued to show massive improvement, and I was able to regain some normalcy. During recovery periods, I spent time with friends and family, returned to activities like basketball and volleyball, and enjoyed moments that reminded me life was still moving forward.

The final stage of treatment was the hardest. I had a catheter placed in my chest and collected my own stem cells before beginning a powerful chemotherapy regimen called TBC: thiotepa, busulfan, and cyclophosphamide. The goal was to eliminate every remaining cancer cell, but it also destroyed much of my immune system. I entered Baylor’s cancer hospital on September 26th and stayed until October 21st. The treatment pushed my body to its limits. I experienced extreme nausea, painful side effects, and a period where I could not eat or drink at all. After chemotherapy, my collected stem cells were returned, known as stem cell transplant, to rebuild my immune system. On October 6th, after completing treatment and receiving my transplant (smelling like cream corn iykyk), I was declared cancer free.

Recovery was its own battle. I had to rebuild my strength and restore my immune system after getting nutrition from a tube for two weeks. It took 2 more weeks after being declared cancer free to be able to drink and eat again, and finally end the struggle for good. I recovered rapidly over the next couple months and eventually, I went back to work, returned to school, and watched my hair grow back. My MRI scans have remained clear, and although there is always a chance cancer could return, I do not live in fear.

Instead, I see this journey as a testimony of God’s faithfulness. If I had lived 100 years earlier, before modern chemotherapy existed, I would be dead 6 feet under. But through the medical care available today and the grace of God, I have been given more time and a renewed purpose.

Now I have the opportunity to share that hope with others. During a mission trip to South Padre Island, I shared my story with someone who was searching for answers about Christianity. After hearing my testimony, he opened his heart to the Gospel and gave his life to Christ.

Looking back, I do not see brain cancer only as a tragedy. It became the greatest testimony of my life.

I mean... When I just went to the university, and share with my professors, and the music classes that makes me laugh all the time... I have dreams with my future graduation, that's so frustrated...

Sorry, I just wanted to write what I feel right now, I don't want to worry my mom and my sister... Sometimes I want to cry, but I can't because it's not good for me as patient

I have a boyfriend and he is obsessed with the sex, he told me that her ex liked to make it all the time, but I'm different, and in this moment I'm working of my recovering of Lymphoma, and when he visit me he want to touch me, but I live with my parents, and he angry thinks that I don't love him, and I don't know what to think about him... All the men have sex obsession?

Hey everyone, 28M with Stage IV NScHL a few months into chemo (BV-AVD).

I'm feeling pretty lost career-wise and don't know whether to quit my job and focus on other interests or stick it out.

For context, I work in publishing managing digital content. Once treatment started my schedule went from full time to 3 days on, 2 days off, then the following week off, with the option to pick up extra hours if I have the capacity... only the last few cycles I haven't logged on at all outside my 3 required days because I just mentally and physically can't do it.

The bigger issue is that I hate the job. The people are nice enough, but the work is completely unfulfilling. It's a dead-end role, I have zero passion for it, and I struggle to care about what I'm doing. Even before my cancer diagnosis, I was planning to quit and take some time off because I was so burnt out.

I still have a couple of weeks of sick leave left, then I'll be dropping down to part-time. Financially I have enough savings to cover my living expenses/mortgage for around 7 months if I wasn't working.

My long-term goal is to move into a more creative/technical field (I'm interested in graphic design, front-end/web design, and software development), but I'd need to spend time building a portfolio and upskilling before applying for jobs.

I would love to quit my job and give my full attention to recovering, building a portfolio, and learning new skills. Is this a bad move? Has anyone been in a similar position? Any guidance/advice is really appreciated.

My dietician wants me to take a multi-vitamin with all the b vitamins, but without more than 150% of vitamin A, C, or E. I also have the mthfr gene and I’ve heard it’s best that I use a methylated folate. Did anyone else have this criteria? What did everyone else take during chemo?

I found a vitamin on Amazon that looks promising, but has 33,000% DV B12, which sounds excessive

Hi all,

I finished 4 cycles of ABVD in August 2025. My end-of-treatment PET scan was Deauville 3. Most of my disease at diagnosis was in the left side of my chest, with some involvement of the left level II and IV neck nodes.

About two weeks ago, I noticed a small lymph node on the right side of my neck (level V). It's difficult to tell whether it's mobile or firm because it's quite small and seems to be close to a muscle. It isn't painful.

I'll be seeing my oncologist next week, but in the meantime I'm wondering if this sounds concerning for a relapse, or if others have had something similar that turned out to be benign?

Thanks.

My partner 29m has DLBCL and is on POLA RCHP. We have avoided crowds and seen friends mostly outside or small groups inside. He will be receiving round 4 on July 13. His very best friend is getting married July 24 weekend and he desperately wants to go (it’s local). They are basically brothers. It is a very large wedding - 250 people indoors. He has given up so much the past few months - skipped multiple other close friends’ weddings, trips with his friends and we even had to push out our own wedding and associated celebrations. This is the one thing he’s really hanging onto of wanting to attend. He has mostly handled treatment pretty well and has had normal blood tests prior to each treatment. Looking for non-judgmental POVs if anyone has attended (or skipped) anything similiar during treatment. I don’t even know how much a mask would be helpful in a crowd that large when nobody else is wearing one and he’s worried about “looking sick.” Obviously the smarter thing would be to skip and if he’s not feeling well that weekend the decision will be made for us, but thinking of weighing the mental health aspect as well. It just sucks to be dealing with this at such a young age!

Hi all,

A few months ago I (26M) was diagnosed with DLBCL. It was an incidental finding from an unrelated MRI, and my PET scan showed that this is a primary bone marrow lymphoma, as I do not have any involvement in lymph nodes or soft tissue.

I didn’t have any of the B symptoms besides fatigue, but I also have an autoimmune condition so I can’t directly associate the fatigue with the lymphoma.
I do have occasional night sweats, but it’s not the “drenching” type that I often hear about with lymphoma. I may wake up with my shirt slightly wet, but never to the point where I need to change my sheets or anything. It usually happens if I have a nightmare or a lot of inflammation that night. Again, not sure if I can directly attribute this to the lymphoma.

I ask because it seems like most people use the alleviation of B symptoms during chemo to get a general sense of whether or not the treatment is working.

I am currently approaching my third round of R-CHOP and am quite anxious about my PET scan which I will get after my fourth. I’m anxious because I have no barometer of whether the treatment is working or not until I get the results.

I’m wondering if anyone else has experienced something similar?

Hello everyone. My wife 31 yrs old diagnosed with PMBCL last January and confirmed the mass was around 15.8cmx13cmx7.4cm with fluid in her chest and heart sack, treatment was R-CHOP. Able to treat that complication initially

After 3rd session of chemo did a CT scan turns to 8.9cmx7.9cmx4.75cm we’re very positive since theres a response from the chemo drugs.

After finishing the 6th session of chemo and did CT scan after a month it grew back to 11.1cmx13cmx7.1cm we also notice multiple lymph nodes again in her neck.

After surgery, onco and surgeon told us the tissue sample collected was more of fibrosis scar tissue base on physical characteristic and didn’t expect initially to be like that. We gained hope again knowing PMBCL was well known to have this scarring after treatment.

Aside from that she’s feels fine, gained weight, vitals are good, cbc, blood chem results are good. Done with surgery and waiting for biopsy result again.

It frustrates and discourage us even though we know this type of cancer is highly treatable and curable but we don’t know what to feel. Any thoughts or fellow people similar case with my wife.

Hey y’all! I recently was diagnosed with lymphoma cancer in February 2026. But two weeks ago maybe more, my oncologist said I was on my last cycle of the 6 that was planned and after that I should be done with my treatment! other then ordering a pet-scan to see if any of my mass is still there, which they would blast with radiation to completely shrink it. Over these past weeks I haven’t been receiving any treatment or taking harsh drugs anymore. Would I be okay to…get drunk? would I be okay to drink in general? i’m a 21 year old and wanna have fun for the fourth of july LOL. please let me know! much love ♥️

Update: I decided not to drink! the night was more laid back and my friends were just sipping on some drinks. My boyfriend supported any decision I made and i’m glad I didn’t cause I don’t have enough information, i’m gonna let my body heal first. thank you guys!

Hey all, I hope you're doing well. I am reposting this post as i didn't get any response on my previous post and I am stressed out and looking out for advice.

I went into remission last November, completed radiation in Jan. My 6 month PET CT also came to be perfectly fine.

Now my onco says that the variant i have. (DLBCL anaplastic variant, I am also retropositive, hiv 1 but i am under control now and it's undetectable) is supposed to be a aggressive one with a higher chance of relapse, so is suggesting to go to ASCT now.

My question is, is it worth it? Considering he didn't have much data to prove it will actually reduce the risk of relapse, and we can't be sure relapse won't occur after this.

I will have to take time off my work again, and in this economy i feel scared now to do that, I already am in conversations that my work is not upto the mark after what I went through, and my availability at my work should improve.

Third, I feel I am not a statistic, I am just 26, I feel healthy, i live with a very healthy lifestyle and eat healthy, and exercise whenever I can. I don't feel a reason to be scared of relapse when I am doing everything in my position to prevent that.

So, what do you guys think? Should i just get it done to be preventive? Or have you felt this process was not that useful?

Thanks

Last week I was diagnosed with stage 2A Classical Hodgkin Lymphoma. Yesterday I had my first of 6 chemotherapy/immunotherapy sessions (N-AVD). Does anyone have any particular advice about dealing with the side effects? I am quite anxious about how my body will react. Right now my mouth feels weird and I feel quite bloated. I know side effects tend to be at the worst after around a week from receiving treatment.

I'm 19 years old and although I'm grateful that it's just a few months of treatment, it still feels insane how my entire life has been flipped upside down so instantly. I'm sure I'll get myself into a routine but so far I really hate all of it. I hate the hospital, I hate the blood tests, I hate having the drugs injected, I've hated having to tell people, I hate the stress of it all.

Stage IV MZL, widespread disease.

I feel a weight on my chest that I can’t push off. My husband at 31 has Stage IV MZL with activity in his abdominal cavity, suspected gastric mucosal involvement, pelvis, ribs, spine.

I feel as though a dark cloud has just moved over us and snuffed out all of the light.

We need positivity and stories of hope. I’m not sure if my pregnancy hormones are making this feel so much heavier than it is but I almost feel paralyzed by what we learned after speaking with the oncologist.

Please share your happy stories. As a caregiver, I am desperate for them.

As always, thank you everyone for the support. This is new and scary and I want to know he will be okay.

Hello everyone, I’ve done 2/6 rounds of RCHOP. And I absolutely want nothing to do with eating any meat. Has anyone else experienced this? How much of it is mental vs. physical? I’m wondering if this is just a temporary thing?

It started when someone gave us bbq for dinner and just the smell of the chicken made me gag. The most I’ve been able to stomach is a few pieces of bacon at breakfast time. I ate a sausage at dinner today and it hurt my stomach.

I know chemo changes your appetite and cravings. What are some ways that I can get protein in? I’ve had to cut out nearly all meat not by choice. I’ve tried hard to up my daily intake of fruits, vegetables, and carbs to ensure that I’m getting enough calories. Any advice or similar experiences would be greatly appreciated. Thanks!

I posted last week with my husbands initial diagnosis of NHL while waiting for a differential to confirm either follicular or marginal zone. It sounds like our lymphoma specialist is calling this MZL at this point. PET scan was yesterday and it appears that something was posted to my husbands MyChart, we’re assuming it’s the read of the scan.

We tentatively have an appointment with the lymphoma specialist on Monday late afternoon or Tuesday mid day depending on results.

My question is this: should we open them now knowing we won’t be able to talk to anyone about interpretation of the results until our appointment? Or should we wait until then? The curiosity to know is challenging because this waiting game has been so tortuous with the anxieties, heaviness, confusion, etc. I just can’t decide what would be better for us at this point.

I know I should be happy and deep down, I really am, but I’m just so scared.. i went through so much shit.. all the side effects, the heart palpitations that I had that made me think I would die any second…

I’m 21, male, classic Hodgkin’s lymphoma.
It’s all over now and I’m so happy about that but I’m so scared of what’s to come now.. I don’t trust anything..
I did 6 rounds of BrECADD. My interim scan after two rounds showed a mass reduction of nearly 70%. My main mass in my chest went from 13cm to 5cm.
The SUV score in the three areas I had, went from 16.2 , 15.8 and 15.3 to 3.4 , 3.1 and 2.7. my liver score was 3.3 so the one area being 3.4 made them give me 6 rounds. The other two areas with 3.1 and 2.7, were under my liver score of 3.3 so already deauville score 3.

But having no update at all since that scan, which is now almost 4 months old, just makes me so scared of the end scan I have in 2 weeks..

My mind should rest now but every day these questions bomb my head! What if the tumor isn’t gone? What if it has grown again? What if this, what if that… gosh I don’t trust anything! I don’t even trust the fact that my hair will come back…

I want this all just to be over..

Hi! Currently receiving EPOCH DA R for PMBCL, and had dose adjustments 3 times already (on my 5th one). I'm curious if anyone here experienced the same recovery phase for each cycle, despite their doses being increased per cycle? Like similar days of fatigue, and not worsening side effects.