u/y0m0tha

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?

I’m 1 week since my first R-CHOP, and it’s really hard to do anything. I spend most of the day sleeping. I haven’t left the house too much and it’s hard to get work done. I also have completely lost interest in video games, caffeine, alcohol, thc, and have no libido. The only thing I can do is watch movies but even that has limits. Does it get better?

Wondering if anyone else here has experience dealing with lymphoma and an autoimmune illness. I’m 25M and have suffered from ankylosing spondylitis since I was 13. I have been on biologics (first humira, then remicade) which have done a miraculous job at tamping down the disease activity.

Of course, the lymphoma diagnosis complicates this. My hematologist oncologist was pretty sure the cancer is unrelated to the biologic, and cleared me to get infusions if absolutely necessary while I undergo R-CHOP. I would like to avoid this due to immunosuppression, but the arthritic effect of my autoimmune disease is powerful and I become basically disabled without the remicade.

I am finishing up day 5/5 of my first cycle of 100mg prednisone and it has done heavy lifting in alleviating arthritis symptoms, but since this is my last day I’m a bit worried about the next two weeks without it.

Anyone else suffer from something similar? Would love to hear how you handled it.

Hi all,

25M here diagnosed with DLBCL recently. I had my first R-CHOP this week and besides a little bit of nausea I am doing okay physically.

I am struggling mentally, as all of this was an incidental finding. I had an MRI on my knee which revealed a lesion, 2 biopsies later and the doctors finally diagnosed me with lymphoma. I had none of the B symptoms and a rare bone only presentation (only one tiny spot on a lymph node appeared on the PET scan, but several spots in my marrow lit up). It was ultimately genetic testing which gave the doctors the confidence to diagnose the cancer, as morphology from the bone samples alone were suggestive but not 100% conclusive.

I am struggling because I have no barometer in terms of physical symptoms to know if the chemo is working, because I haven’t really had any physical symptoms. My mind keeps jumping to the worst case scenario, when I get my mid treatment PET scan, that it won’t work and they can’t fix it. I can’t stop thinking about this possibility. I know the statistics are on my side, but given my weird presentation, I am always on edge about weird outcomes.

I am getting rescanned after my fourth treatment and I’m already anxious. What are some strategies you guys have to focus on the present instead of worrying about the future. I am already on SSRIs and have a therapist (tho probably will be seeking one more experienced with medical trauma).

After 2 months of doctors trying to figure it out I’ve finally received the diagnosis of diffuse large B cell lymphoma. It only presented in my bone marrow and in no lymph nodes which is rare and made it very hard to diagnose. I am starting R-CHOP soon and it’s really difficult to accept that this is my life now. It will be 6 treatments, one every 3 weeks.

The finding was completely incidental and it’s been such a long road to get to this point, and it’s an even longer road ahead. I’m only 25 and have a history of autoimmune illness; this is by far the hardest thing I’ve ever had to face. I feel so alienated and isolated, I cannot relate to healthy people anymore.

I’m glad I found this forum of people going through similar things. Let me know if there are things you wish you knew before starting chemo.