So my test results are back and well based on biopsy I have Curanic Systemic Follicular Lymphoma. My dermatologist confirmed this and made a urgent appointment at a hematologist for further investigation and treatment. The current waiting is wrecking me and I’m scared shitless. How do you people cope with this? Only thing I know is that there is not aggressive but that’s mainly based on test results wel don’t know if it’s anywhere then in my skin….

Hello everyone I am (30m) , I’ve been battling Burkitt lymphoma since the summer after 6 long months/rounds of chemotherapy I’ll be finished up tomorrow.

Doctor said my scans looked good on last week’s PET scan. Chemotherapy has been exhausting as I’m sure all you can relate. But just remember to not give up and make it to the finish line.

God speed on everyone in this group and blessing to your health! 💕

Just finishing 6th treatment R-CHOP + Polo, waiting for PET scan in March. Oncologist discussed a CAR T trial that he has and wanted to know if I would be interested depending on results. Is this expensive? Will insurance approve any cost associated with it? My husband company is self-insured and not happy about the cost that my cancer has accumulated. They want to change me to a stand alone insurance plan different from their normal plan for employees.
Anyone else have similar experience?

61 female diagnosed in October and just finishing 6th treatment R-CHOP + Polo, waiting for PET scan in March. Oncologist discussed a CAR T trial that he has and wanted to know if I would be interested depending on results. Is a trial normal procedure post after treatment? Is this expensive? Will insurance approve any cost associated with it? Anyone else have similar experience?

I’m looking for people to share their experience with radiation. I am 33 years old and I have stage 1 Hodgkin lymphoma, and am considered unfavourable. I have a 7-8cm mass on my mediasteinum that is pressing on my heart and lung. So far, I’ve done 3 rounds of chemo (ABVD) after the 4th round they will do a PET scan. If nothing lights up, they will do another 4 rounds + 20 rounds of radiation. If it does light up, they will either put me on the same chemo for longer, or a harsher one, and then the radiation.

I was all ready to do the radiation until I met with the radiation oncologist and heard the risks. The risk of cancer, the risk of my esophagus narrowing, lung scarring etc. I left there feeling overwhelmed and now don’t know if I even want to do it. I know everyone’s different, so even with other people’s experiences, I could have something different but I’m trying to make a decision and trying to inform myself. I’m just scared. My mother died in November 2023 of stage 4 lung cancer, and on the 9th of January my dad died of congestive heart failure: I don’t have parents to call and help me anymore so I’m reaching out.

32 (m). I got diagnosed with ALL end of the year. Just finished my 2nd cycle. Anybody did stem cell transplant?

I began seeing my oncologist when I was hospitalized before I was diagnosed. After diagnosis, he referred me to get a second opinion from a lymphoma specialist at Cleveland clinic. (My oncologist is in the same system, just at a different hospital) The specialist gave me my treatment plan and said I could do treatment with my original doctor, or do treatment with him. I chose to stick with the original doctor since he was closer. My doctor has been fine, he’s just isn’t a specialist. Ive done 3 infusions so far. Debating switching to the specialist to oversee my care, but wondering if it’s necessary? Anyone been through anything similar? Traveling isn’t a big issue, the specialist is at a very large facility and initially I preferred a smaller scale setting.

Follicular Lymphoma at 46. 6 rounds RCHOP chemo in early 2020.

If you’ve relapsed, when was it…how long after treatment?

I am a 30f in treatment for CHL. I just had my interim scan and received a deauville 3 for lymphoma. However, the fundus of my gallbladder is showing increased uptake and my stomach wall. Radiologist commented stomach may be physiological. But the report says I should follow up with an URQ ultrasound. I am freaking out thinking I have a second cancer.

Has anybody else had other organs not related to their lymphoma light up during their pet scans? Did they turn out to be normal?

Went in for a checkup and scans yesterday. I finished R-CHOP for DLBCL back in April 2023. I am still in the clear. Doc says I have another scan in July and that will be my last one going forward (unless symptoms showed up). The scanxiety was rough this week but I’m so excited everything still looks good.

No, we're not asking for biopsy results that came back "Positive." We want to hear good things that happened last month. Big, small, or in-between, share whatever has you feeling good recently.

We aim to make this a recurring monthly post on the 1st, but you're of course still welcome and encouraged to post your own successes throughout the month as well. :-)

​

Thank you to playingnaked who has posted these in the past, and also to SparkleDammit who suggested we make it recurring and more frequent!

Finished chemo 3 months ago (with full response) and gradually returning to college (24y)! Took all my exams in this winter session and starting to feel a bit more normal again.

Went through a pretty ugly depression since august, but things are getting better. Lost some friends but gained more peace. I go to therapy and this week I started swimming so that I bring some movement in.

I still freak out sometimes thinking of my next PET, spontaneous pains or my eyes problems with which i remained post treatment, but these days were pretty good and I m trying to find a rythm that goes for me :) Deffinetly priorities changed.

Sending good vibes to all of you (from Eastern Europe) 💕 This community helped a lot!

I (33F) was recently diagnosed with Nodular Sclerosis Hodgkin lymphoma and will be starting BV-AVD chemotherapy in a few weeks. They believe it to be early stage. Does anyone here have experience with BC-AVD chemo treatment? If so, what did you experience as side effects? What helped? What didn’t?

From a prep perspective- What should I take care of beforehand in terms of admin tasks, medical paperwork, or treatment-related logistics? Also, I’ve heard that some foods (like sushi) are off-limits during chemo—are there any must-do experiences I should check off before starting?

what essentials should I pack in my chemo bag? Any other advice to make the process smoother? Thank you!

Hello! I'm 33 and I was diagnosed with Hodgkin's lymphoma in July. I don't know what I want to get from this post I just have a little rant. I just finished my last AAVD treatment on January 21. Obviously, I'm so glad I'm done. I've been living with my mom, and I'm still off work until 2/10. So,right now so we're together all day since my mom works from home. She loves to talk on the phone and I've noticed when she talks about me to other people she'll say things like "she's done but she still has a port in, so they could start chemo back up at any time". Or she'll say something like I'm "getting" chemotherapy not that I'm done with chemo. I know I just finished chemo, but every time she says something like that it annoys me. It's almost like she's planning on me relapsing? As far as I know my risk of relapsing isn't that high and I do not want to even think about that. Why would she be thinking this way!

I’ve posted a few times since my initial differential diagnosis. At first it was just indolent marginal zone lymphoma. Then after a month of testing it was stage 2 marginal zone or follicular. Now my oncologist told me that pathology is still trying to figure out what I have and that it may be lymphoplasmacytic lymphoma and they are looking for the MYD88 mutation.

Im scared shitless now because it was my impression that early stage MZL or FL is highly treatable with favorable outcomes and it seems like there aren’t as many options for LPL or WM. I’m only 28 so I am somewhat reeling. Therapy has been a huge help but I am having such a hard time seeing into my future and living a full life

Hi Everybody!

I (27 m) was diagnosed earlier this week with NScHL and had my first meeting with a medical oncologist Post-Diagnosis today. For reference, I am in the Philadelphia area currently in the Jefferson system, but I am also getting a second opinion with Penn on Monday (for anybody that may also be local to this region and have input).

The doctor I met with today seemed pretty awesome. He was recommended to me by the surgical oncologist that initially did my biopsy, and I really liked her. He spent an hour with myself, my wife and my parents today talking through everything and all of the potential routes to go from here despite us not even having a staging yet (I'll be getting a PET scan next week). He also said that the goal, regardless of stage, is cure and for me to look back on this in a few years as a nuisance and nothing more. I guess my question is this - for folks in a similar situation and age range as me, did your doctor also express a high degree of confidence in a complete cure regardless of stage? The potential stage is honestly freaking me out more than the initial idea of having the cancer in the first place haha!

I was diagnosed with an aggressiv t cell non hodgekin lymphoma 10 days ago and will have to start chemo soon. I will have a meeting with my final evaluation and chemo plan on the upcoming Tuesday. And what I wonder about often is how painful the effects of the treatment may turn out. And if people usually need to take pain medication or not. For myself I would like to be able to look after my 2 year old daughter, carry her around and preferably not be in pain when doing so.

How was your experience with pain overall and what medication did you get for it ?

My oncologist just confirmed today will be my last treatment and I am officially in remission! So happy to be done, and I’m so grateful to everyone in the sub for the advice and community. I feel like I would have done way worse mentally without y’all.

What are the chances my husband relapsed? Recent Pet Scan he has an Aortocava Lymphnode SUV max 8.8. Oncologist ordered biopsy but she said they might not be able to do it due to the location and artery right there. He has a few cervicle lymphnode barely above the threshold but I know AITL is tricky. He has an auto stem cell transplant after complete remission 8 months ago

Hi all, my dad (67) was diagnosed with DLBCL last week after a short period of illness. His consultant believes this is Richters transformation (he has CLL, treated with immunotherapy in 2021). Has anyone any experience of this and RCHOP putting it into remission? Everything I read online is particularly negative, particularly considering his age and previous treatment.

I hope my PET scan on the 25th confirms this for me. I return to work the 20th and go back to life like this never happened. I don't think I'll ever be able to NOT wear a mask in public now or ignore any type of fatigue or pain, but I am alive and I am happy and I get to go home to my husband and my toddler.

What a good day. Thank you everyone and good luck luck.

They think I have MZL, waiting for cytogenetics to confirm it's not WM.

Who are the best and most experienced treaters in this country for marginal zone?

I'm in Northern CA but willing to travel for a second opinion.

Hi everyone. I’m currently 25 years old and 21 weeks pregnant with my first child. When I was about 7-8 weeks pregnant I noticed that my lymph nodes on the left side of my neck were swollen. Since it’s my first pregnancy, I thought that they were swollen because of the morning sickness I was enduring at the time.

At 10 weeks, I had my NIPT done and sent off to labs, which came back two weeks later with the result of “not reportable”. I had a redraw and the same result happened again. My OB reached out to Labs Corps and they said “Her data was globally aberrant, meaning there were large areas of over- and under- representation across the sequencing data. This data is uninformative for fetal status, which is why it is reported as "not reportable." The exact etiology of aberrant data is unknown but tends to be of maternal origin rather than fetal – we have seen this in cases of fibroids and maternal medical conditions such as autoimmune disorders or neoplasia.” I was then referred to MFM.

At my first MFM appointment, I had my anatomy scan done at 18w,6days. She said my baby boy looked good, healthy, and no abnormalities. She then asked me if I had any lumps around my body or swollen lymph nodes and I said yes then showed her my neck. She told me it looked very suspicious, then ordered me labs and a US. Within the next two hours at the hospital I had my labs drawn and the US done. Later that day, I got a call from general surgery, to schedule a consultation for a biopsy for the next day. I went in for my consultation, my general surgeon wanted to do an excision biopsy. She explained that she would do general anesthesia and take 2 of the largest lymph nodes out and send one to pathology and one to get the cytology done.

Since I can’t have a PET scan done, I got a MRI done of the head/neck, abdomen, and pelvis, where they confirmed my left neck lymph nodes, including supraclavicular nodes, were enlarged and found an additional enlarged lymph node in the mediastinal.

I had the biopsy done last Thursday, for anyone wondering, they monitored my baby’s heartbeat before and after the biopsy.

Four days later, I got my results from pathology and got diagnosed with NScHL. Since my spouse is in the military and we are currently stationed overseas in Japan, we’re in the process of getting a Compassionate Reassignment so we can be closer to both our families.

I should be starting treatment in the next 2-3 weeks! Hopefully it will be a smooth transition back home and preparing for my baby while getting chemotherapy!

I just completed treatment 4 out of 8. I’m going for my PET scan soon and I’m really nervous. My bloodwork has been perfect the entire time and I actually feel better the week after my treatment. I have more energy than before I was diagnosed because I was showing symptoms. I’m stage 2B. I don’t have any of my old symptoms at all and chemo side effects are minimal.

I guess my question is would there be signs that the chemo is not working? So far it seems like it is? But has anyone had perfect blood work, minimal side effects, and felt good on their off week and still had the cancer not respond to treatment?

I am diagnosed with B cell lymphoma (confirming grade and stage now) after 2 rounds of pet scan, CT scan and 3 biopsies, one being the terrible bone marrow biopsy.

Before all this started (gestures all around) I was supposed to go get my mammogram and colonoscopy. Should I still do these? Could these catch something that did not show up in two PET CT scans?

I feel like I should do my "screening" but am so tired out by the lymphoma diagnostic process.

Well everyone, it’s happened…

I was diagnosed with Primary Mediastinal B-Cell Lymphoma on January 4th after over a month of testing and exams.

Earlier 2024, I had major chest pains that would come and go but were extremely severe when happening. They felt similar to what I thought heart issues felt like, so I went to my local urgent care where we did x-rays and they confirmed nothing was seen and sent me home with some muscle relaxers (which didn’t work.)

It wasn’t until this past December I experienced worse pains that were not getting better and were causing different, newer pains in my back. After the mass was finally caught that same night, I was asked to come in for my first CT scan. I was terrified considering I’ve been a generally healthy person my entire life, so getting an IV and entering a huge machine was such a new thing for me.

After the scan, they confirmed it was a mass and scheduled me for a CT-guided biopsy which confirmed the cancer, PBMCL.

I ended up changing insurances during all of this, so I’ve had plans on getting my PET scan, echocardio, and port installed all this week and next, but a change of plans happened when I ended up at the ER for a high fever and major shortness of breath. I’ve been inpatient for 4 days now and am not on my 3rd day of chemo! It all happened so fast, but with how severe my symptoms become, my doctor chose to escalate all my appointments and start now.

It feels surreal to be on chemo, it feels so real to start this insane journey and know this is happening. I’m scared, I’m eager, I’m mad, I’m sad, I feel weird, I feel just flat out weird. I just can’t believe it.

If anyone who is in the same stage as me wants to talk, please please reach out. I feel sort of numb and don’t really know how to talk to my family about it, but I might want a friend.

We got this!

I (16M) was just diagnosed with Hodgkins Lymphoma stage 2B. I get my port tomorrow and start my chemo. I used to do intense weightlifting frequently for fun, but haven't gone to the gym in a few weeks due to everything thats been going on. Once my chemo starts I want to start doing calisthenics at home, avoiding public gyms. I have a pullup bar but thats about it. I want to do stuff like front lever, planche, handstand pushups, etc. I was wondering if it is safe to do during treatment, if I would have the strength for it, how intense my training should be, when I should be training (how many days after a chemo injection, etc), and how often I should be training. Anything else I should know would also be appreciated. If you have any experiences with something similar please share.

Update: Just found out shortly after I made this post that I will be having a picc line instead of a port.

Hi all,

I have nodal MZL and it is time to start treatment again. It looks like I will be doing Rituxan and Revlimid, and I was wondering if anyone had any experience with that?

Thanks in advance ❤️