r/lymphoma

Last week my fiancé (40M) was diagnosed with follicular lymphoma transformed into diffuse large B cell. Grade 3B. Diagnosis was made via surgical biopsy. It has been a months’ long ordeal - one groin node noticed in February, PCP first seen in February. Countless tests (bloodwork/chest xray normal, no symptoms except the lump and back stiffness that we don’t know is related or not) and doctor’s visits later, surgery was April 30. PET is scheduled for June 1. The waiting is honestly terrible. I’ve done my absolute BEST to get appointments moved up and get things going as fast as possible, but we are stuck in this waiting process. I can’t help but think the cancer has been getting worse all this time, since February! Ugh. Anyway. Thanks for listening.

Hi all I beat cancer a year ago and I’m wondering if anyone else smokes weed after? I’ve always smoked weed and never nicotine though but I can’t seem to give it up. Does anyone else smoke after chemo? My cancer wasn’t in my lungs and my lung scan came back “perfect” they said. Does it like look bad that I still smoke weed? I feel like weird about it but can’t imagine my life without it. Idk.

I have completed 6X nivo AVD 4 weeks ago and I’m now waiting for the PET scan. CBC shows my WBC and neutrophils became high again. This makes me extremely worried because this is similar to blood work before starting chemo. Anyone have similar experience and how long does it normally take for blood work to turn all green if I have achieved remission?

So I have two lymph nodes on either side of my neck which are palpable. I have done multiple ultrasounds of it. It is driving me crazy whenever I try to check that your and feel those nodes.

Anyone with the same problem?

Did anyone have a pleurodesis while waiting for diagnosis / pre-chemo?

I’m diagnosed and mid-way through treatment. The pleurodesis lights up my lung lining on my PET scan, and I’m learning that it’s well-documented that it will continue to light up for decades.

Wondering if anyone else has dealt with this.

19F here! I've posted a while ago about my diagnosis and I've just been staged, stage 2BX unfavourable classical hodgkin's lymphoma, because of a mediastinal mass, I was supposed to be on ABVD but the doctor said i can't be taking Bleomycin due to "severe pulmonary restriction", i think it might be because of the mediastinal mass? I'm not sure. Anyway, I'm supposed to be on Nivo-AVD for 4 cycles instead but i still didn't start.

Before i ask about Nivo-AVD, i have shortness of breath and fast heart rate and i get really easily fatigued, like i went up two flights of stairs and i was breathing heavily and my heart rate got extremely fast, also i was out and walked for a like less than 10 minutes and i was again really fatigued and had shortness of breath and fast heart rate, also i sometimes find myself holding my breath for a few seconds for absolutely no reason is this normal? Or is this because of the mediastinal mass? Its size is 140 × 91 x 135 mm, and should i mention that to my doctor like would it interfere with the treatment?

Now, If someone had the same treatment, Nivo-AVD, can you please tell me how was your experience? Did all your hair fall out? What about eyebrows and lashes? Did you lose weight? Were you extremely fatigued to the point where you couldn't do anything? Like going to classes/work or studying?

Also please can someone tell me if 4 cycles mean like 4 rounds or 8 rounds? Cuz when I tried to google it, it said that cycles and rounds are used interchangeably but it also said that a cycle is 2 rounds??

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 💛

Today my medical oncologist told me that I have got in remission. NED was mentioned in my file.

Very thankful to the members of this sub for always inspiring me.

And I think it's time now to focus on new things in life.

i know it's so unpredictable but for people who had filgrastim both between chemos and before stem cell harvest, were the pain levels the same? i'm about to start them for collection but it's double the dose daily i had last time so worried honestly, thanks

Hey everybody. I finished Nivo-AVD and radiation last year for classic Hodgkin's Lymphoma. I've been in remission since last April, so over a year at this point. I was just in to see my oncologist two weeks ago, and it was a great appointment. Bloodwork looked great and nothing stood out upon physical examination.

Last night, I had a tender node pop up in my right armpit, which was not an area that I previously had lymphoma in. Have others had benign swollen nodes pop up in different locations while in remission? Obviously, any swollen lymph node is scary for folks like us 😓

I have a somewhat rare and indolent non-Hodgkin lymphoma called Waldenström's macroglobulinemia (WM). When I needed treatment I had R/Benda in 2016 and it worked very well.

Now my numbers and symptoms indicate that I need another round of treatment. However, because R/Benda is known to cause DNA damage, there's a school of thought that it shouldn't be repeated. Research papers suggest though that, if it was sufficiently long ago and was well-tolerated and worked, it warrants repeating the R/Benda treatment.

I'm going to get my bone marrow tested for DNA abnormalities as well as testing for the CRCX4 and MYD88 mutations relevant to WM to check if the BTKs (the brutinibs) will be effective as an alternative treatment to the proposed R/Benda regime.

Any input or insights gratefully received.

Well yeah. It’s been two years since I started dealing with Hodgkin’s. A lot has happened, & I can’t say it’s always been for the better. I never joined a community like this or even talked to most of my friends about it till like a year in because I’m just like that. It’s been rough though- I’ve been in college studying biology and it ain’t easy. At times I feel as though I don’t know how to live, and like the problems of ordinary life are too much for me to handle. I’m on a bed right now, waiting for my autoHCT to begin as my Hodgkin’s relapsed because why not. Recently though, I’ve been reaching out more and more. I’m finding it easier to manage the more I feel supported by my friends, and I’d really like to begin to have a point of reference for how others in my shoes feel. At the end of the day, I’m here to say two things: Hi, and how we feeling? Also I’m 20. I don’t use Reddit enough to know where to put the parenthesis.

I will be completing my last chemo infusion in a little over a week from today. I feel like I have been in survival mode since diagnosis, measuring every day by the countdown until I’m done with treatment. I was diagnosed at 22 basically as soon as I graduated from college.

As I’m nearing the end of treatment, I find myself starting to grapple with the immense grief of what has happened to me. I was living a very happy life at my college when I was diagnosed — perfect little beachside college town with a set daily routine and all my friends living down the street from me. I was supposed to stay in said college town for a gap year after graduation, but this was ripped away from me when I was diagnosed and had to move back home with my parents.

I am planning to apply to graduate school this winter, so I will be able to return to academia eventually, but the present feels like a gaping maw of what lies ahead. I secured a summer job that will keep me busy, but I am frantic thinking about how I will spend the hours I’m not working. For lack of a better word, it feels like everything sucks now and I will never be as happy as I once was in college.

This feeling is definitely being intensified because I went from having my own place in college to being stuck in my parents’ tiny house. Luckily, I am going to be moving into their ADU in the next couple weeks, so I will (sort of) have my own space again.

I just feel so lost. I know this is normal after dealing with cancer, but it is so hard. I am in therapy and take medication for anxiety/depression, but I am so worried I will never be happy with my new life because I will always be comparing it to what once was.

Ct scan shows occipital nodes with extranodal extension and plus other enlarged nodes in neck and upper abdomen and retroperitoneal. All organ look clear. Awaiting biospy results. Chance this is still hodgkin's?

Hi! New to posting here but I'm 40F and was diagnosed with Stage 2B cHL in late Oct 2025. Just about to have my last chemo infusion on Friday (PET scan all clear!). I've had 6 cycles of ABVD but was approved for Brentuximab Vedotin instead of Bleomycin. I'm so thankful to be at the end of treatment but now I'm looking forward to what might happen cycle-wise among other things...

Just before I was diagnosed, I had an emergency unilateral oophorectomy due to a huge ovarian cyst causing torsion to my ovary and fallopian tube so my case isn't the most straightforward. I had one 3-month injection of Decapeptyl to help protect my remaining ovary just before my first treatment in the middle of November but the flushes were so disruptive that my consultant haematologist agreed I didn't need to have any more. They've improved somewhat but sleep is not easy at all and I'm desperate for the other peri/meno symptoms to go!! At least not having a period over chemo was a relief 🙃

So now I'm just wondering how long it took for people of a similar age/stage/​treatment to have their cycle return or whether it did at all? Especially anyone who had Decapeptyl? Has anyone also had chemo after having an oophorectomy?

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 All: First time posting

How long did it take you to become symptomatic/need treatment with Indolent NHL B Cell (they're not 100% sure if it's marginal or follicular). I was diagnosed at age 46 4 years ago. Zero symptoms. Just a lump in my arm. Got some radiation. Didn't work. We've watched and waited ever since. I've been pretty asymptomatic until the last couple of months now. I'm itchy especially my ears, finding new lumps and bumps, sore jaw, crazy night sweats. Blood work is tip top. No fevers. No unintentional weight loss. I think I tricked myself into thinking that I would never be symptomatic or need treatment. But here we are. Just wondering if anyone had a similar journey.

Thanks, everyone.

CT scans look clean but I still need to go through 2 more doses and 2 years of other stuff. It has been tough, ngl, and this is ignoring the difficulties I had prior to B-Cell Lymphoma.

Biggest symptom at the moment is definitely the exhaustion, the nausea only lasts a week or so after every dose but the exhaustion is omnipresent. Often wake up with my eyes and body feeling like I stayed up for 3 days straight.

I had 4 cycles of ABVD, (dropped the bleo after 2 cycles) and 36 gy INRT for stage 2A bulky classical Hodgkin’s lymphoma. I finished treatment October 2023. I have done well since then. I have reached the 3rd anniversary of my diagnosis and such this week and I can’t help but focus on the risk of side effects from the chemo. In particular, the treatment related leukemia. Can anyone give insight on this? What long term effects have you experienced or seen?