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▲ 69 r/lymphoma

PET Scan clear!

I have/had DLBCL (69F) and went through 6 rounds of Pola-R-CHP and two more of just Rituximab. I finished that the end of July, had 3 weeks of rehab (= boot camp, 7:30 exercise session on the quad, sports and lectures all day) and then my PET scan 2 weeks ago. I scheduled a 2 week vacation after the PET scan, as I was afraid it would come back with bad news and I needed to get out to somewhere else.

Monday was the day, and the scan has come back clean!!!!! I still have to have a checkup every 3 months for the next two years, but it looks like they got that bastard DLBCL! And then the clinic didn't even have a bell for me to ring... so I had to get a bottle of champagne!

Just for all of you battling out there: hang in there, it is doable! Okay, my hair disappeared and is coming back salt and pepper (I had blonde hair before), but I am regaining my strength (still need naps, though) and life is looking great!

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u/RealWiseWoman — 4 days ago
▲ 10 r/lymphoma+1 crossposts

My brother’s PET scan

Hello can anyone explain this report for me please?

My brother was diagnosed with T-cell lymphoma/lukemia the other day and my parents are freaking out. He has a huge mass in the mediastinal area which is pressing on his SVC along with fluids in his chest. He is 19yo male.

His right side heart collapsed so they put him on VA-ECMO and a ventilator, and was put on induced coma till he gets stable. And later on they gave him a low dose of chemo which was vincristine and 12 hrs later they gave him another dose of daunorubicin.

His kidneys rn are not functioning perfectly so they are waiting to see they might put him on CRT dialysis machine to support his kidneys.

This all happened so fast two weeks ago he was fine!

This is the pet scan report.

CLINICAL INDICATION

Newly diagnosed lymphoma, staging assessment.

PROCEDURE

Whole body 18F-FDG PET/CT scan was performed as per standard protocol, from vertex down to mid-thigh level.

The standardized uptake values (SUV) are the maximal corrected for body weight.

COMPARISON

No prior similar imaging available for comparison.

FINDINGS

Reference mediastinal blood pool activity SUVmax 2.7.

Reference liver background activity SUVmax 4.2.

FDG avid mediastinal lymphadenopathy is noted. Sites of involvement include the anterior mediastinum, subcarinal, paraoesophageal and the right cardiophrenic regions.

For example:

- Conglomerate anterior mediastinal nodal mass associated with moderate pericardial effusion: 15.6 x 9.8 cm, SUVmax 17.4.

Small volume right submandibular lymph nodes are noted with mild FDG uptake which are more likely to be reactive in nature.

No significant FDG-avid lymphadenopathy below diaphragm.

There are multifocal FDG-avid right pleural deposits. For example, a right middle lobe anterior deposit measures approximately 0.8 cm in thickness, SUVmax 7.6.

Additionally, there is focal FDG-avid nodule noted at the right seventh intercostal space superficial to the liver which could be pleural or intramuscular in nature, SUVmax 6.5.

Small volume bilateral pleural fluid is noted.

Diffuse fatty infiltration of the liver is seen with no focal FDG avid lesions.

Multifocal FDG-avid cutaneous thickening is noted at the right proximal medial thigh which are more likely to be inflammatory in nature, for clinical correlation, SUVmax 19.1.

Elsewhere, there is physiologic FDG distribution with no focal FDG-avid lesions in the brain, pancreas, spleen, adrenals or the visualized skeleton.

IMPRESSION

  1. FDG avid mediastinal lymphadenopathy with bulky anterior mediastinal disease as described associated with moderate pericardial effusion.

  2. Multifocal FDG-avid right pleural deposits.

  3. Right seventh intercostal space focal FDG uptake which could be pleural or musculature in nature.

  4. No suspicious FDG-avid disease otherwise.

——————

#QC/EA

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u/Icx7l — 4 days ago
▲ 6 r/lymphoma

What would you do?

My father is 74 just got diagnosed with non-Hodgkins B Cell lymphoma stage 4. it’s in his lungs, liver and lymph nodes. He’s already in poor health due to a crazy lifestyle over 25 years ago. Also in 2020 he got fourniers gangrene and sepsis which resulted in a colostomy bag, he had to relearn how to walk and talk again to do such a long hospital day. He was on life-support for a long while too. So his body is already broken down, and my sisters and I are just trying to figure out whether we wanna do the chemotherapy RCHOP or do we just allow him to be comfortable and pass. If this was your father, what would you consider?

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u/Funny-Caterpillar421 — 4 days ago
▲ 17 r/lymphoma

:(

Now that I have relapsed, I can’t help but wonder what the future holds for me. I was IPS 2, Lymphocyte rich; a very favourable subtype, interim pet negative yet it took only 7 months for my cancer to come back. I genuinely feel so devastated. What makes this more hard is seeing my parents suffer because of me. Every time I look at my father, I can tell he either cried or is trying not to cry. I more saddened by their state of helplessness seeing their daughter suffer than I am with having to fight again despite the future seeming more blurry now than ever. I won’t lie, I didn’t think much of relapsing maybe thats why its so shocking for me.
Those who have gone through ASCT, can you please give me hope 😞

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u/PaleFortune1111 — 4 days ago
▲ 86 r/lymphoma

In 2011, I was battling an aggressive refractory Hodgkin's Lymphoma after failing an Autogulous Stem cell transplant. Fortunately, in 2012, I was one of the first people in the world to receive a brand new drug (brentuximab). After just 5 cycles, I’ve been cured for nearly 15 years!

Hey everyone,

I’m sharing this today because I know how incredibly heavy the dark days of a refractory diagnosis can be, and I wanted to put a beacon of hope out into the world.  I revisited the forums I referred to during my battle years ago and they weren’t very active. So, I’m hoping my story gets heard here on Reddit.

Back in 2008, I was diagnosed with stage four refractory Hodgkin's lymphoma. I was under the care of Dr. Joseph Flynn at the James Cancer Center at Ohio State. I received front line treatment (ABVD) and achieved remission.  I actually received the James Cancer Center Award of Courage that year, I was the worst case Dr. Flynn had seen in his career and the best recovery.  That lasted about a year and a half,  and I relapsed in early of 2010.   The summer of 2010 I received ICE  chemotherapy, I was re-staged after two cycles, and the disease was still progressive.  So I changed to GVD and three cycles of GND. I had enough response and I was able to follow through with an Auto stem cell transplant.   I relapsed on my autologous stem cell transplant after the very first scan. The disease became incredibly aggressive, and I had very limited options.  I tried clinical trial called Revlimid in January 2011, it didn’t help.  I did extensive research of any option available to me the whole year of 2011.

Fortunately, August 19 2011, a clinical trial called “SGN-35” became FDA approved for a bridge treatment for an allogeneic SCT.  March 2012, I became one of the very first people in the world to receive a brand-new targeted therapy called brentuximab vedotin (Adcetris). At the time, it was strictly meant to be a temporary "bridge" to get me into enough remission to survive a high-risk allogeneic stem cell transplant.
But after just 5 cycles and CT/PET scans in May 2012, I went into complete remission. Against strict medical advice, I made the deeply personal decision to walk away. I stopped the drug and chose not to follow through with the allogeneic transplant.

Statistically, I shouldn't be here. Recently, with the help of A. I., I learned how I mirrored a clinical trial around the same time.  There was a pivotal Phase II clinical trial of 102 patients around that time where only 9 people achieved long-term sustained remission on the drug alone without a transplant—and those "enigmatic nine" completed a median of 14 out of 16 cycles. By stopping at 5 cycles on my own terms, I navigated a completely unique path.  I’m currently coming out of the shadows as a “phantom case” and actively documenting my experience.  The James cancer center still has my tissue block samples in archives preserved in paraffin wax and I’m in the process of releasing those samples for research to advance treatment for other cancer patients.  Just recently, Dr. Zihai Li took interest in my case and has shared my information with a few other elite doctors at the James Cancer Center.

Come May 2027, I will be celebrating 15 years of being completely cured.
While I was unable to practice my craft during those days.  In 2011, stripped away from my career of a  glassblower because I couldn't use heavy tools or a furnace, I needed a creative and cathartic outlet. A Japanese friend that I had taught me how to fold origami cranes back in elementary school.  Since it was a great creative option in a hospital environment, I started folding. By the time I left, I had folded 1,615 paper cranes—completely unaware of the legend of Sadako Sasaki or the fact that she fought a matching lymphatic/blood cancer.

Now that I've had nearly 15 years of a cured life, I am finally closing the loop. In September 2025 I assembled 1000 of those cranes into a Senbazuru.  I am back at my torch, using a 2,100°F fire to hand-blow custom glass vessels to permanently encapsulate and protect the 615 "surplus" cranes that represented my overflow of survival. The Senbazuru Surplus Series, I’m bridging that difficult time when I folded all those cranes with my current cured state as a glass artist.  I have also initiated discussions with Professor James Phelan at Ohio State University to potentially pair my 1,700-word foundational essay with a student collaborator for a mini-memoir project.

I have also dedicated myself to a healthy lifestyle.  Minimal refined sugars, lots of antioxidants, and I make my own kefir and kimchi. I consume either daily, sometimes both, for a potent probiotic.  It’s SAD (the standard American diet) that is instrumental in promoting  diseases like cancer and diabetes that are increasingly more common.  And the sedentary digital lifestyle compound this unfortunate scenario.  Covid may be over, but the real silent pandemic is the standard American lifestyle in my opinion.  I exercise nearly everyday, both strength training and intense cardio.  Anything I can do to create an environment in my body that does not benefit cancer cells.

I just wanted to share my personal experience to remind anyone currently enduring ABVD,  ICE chemo, clinical trials, or transplant failures: the human body and spirit can defy every single statistic on the paper. I’m not advocating that you stop any kind of treatment.  Treatment certainly put me in remission and saved my life, I want to be clear about that. During my low points from my battle, I leaned heavily on a lymphoma forum and people’s experiences to understand what I was going through at the time.  I feel obligated and honored to be in a position to reciprocate and put my story out there all these years later.  Keep fighting! 

u/phoenixranchglass — 11 days ago
▲ 28 r/lymphoma

New here! DLBCL, two rounds of R-CHOP done

I just wanted to say hello. I’ve kind of been steering clear of anything online relating to lymphoma as I’ve been a bit too scared but finally got the courage to read this subreddit and it cheered me up a lot. So I thought I’d post.

I was diagnosed with stage 3 DLBCL at the end of August. It’s been a bit of a ride for me and my wife (and my young kids too). I started R-CHOP on 2nd September. I’m in between rounds two and three. Got the first scan the week after next which I’m obviously dreading. My main symptom was a lump on my neck which has now disappeared so I’m hoping that is a good sign, but will go into the scan as open minded as I can.

So far, it’s been going ok. I’m mega-tired, nearly all my head hair has gone now, but I’ve had no other major side effects. I feel like I’m settling into the routine a bit now after the initial drama/activity of the first round of treatment. I’m nervous about it getting cumulatively harder as I go on but also very determined to get through it.

One positive thing to end on: this whole experience has overwhelmed me in terms of seeing human kindness at its best. From my family, to my colleagues, to frankly everyone single person who works in healthcare. Everyone has been so amazing.

Anyway, that’s all. Sending lots of strength to everyone else enduring this!

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u/Every-Dragonfruit-30 — 11 days ago