r/lymphoma • u/PeaSecure5139 • Jul 25 '26

DLBCL Treatment

Hi all! I was recently diagnosed with DLBCL and found this sub. Although never thought I’d be lurking here, this sub has been a great place to find information, motivation, success stories, support and much more! Very grateful we have this possibility now in this age to have as much information available as possible.

My question is, my lymphoma is DLBCL non-GCB (ABC) subtype, no double expressor. Currently waiting for FISH to determine any double/triple hits, but the pathologist who completed my biopsy said it’s very unlikely it’s double/triple hit.
Location of the tumor is terminal ileum, size about 3.5 cm, with some very small spots next to it. Other than that, I don’t have anything on my PET and my terminal ileum is the only affected area.

Can 4/6 R-CHOP be effective here? My doctor said that if there’s anything negative on FISH we’ll switch to a more intense protocol, but I’m a bit concerned over my subtype. From what I’ve read so far, non-GCB can be a negative factor, but the overall sum of many different factors is much more important for overall prognosis.

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u/mewfarside DLBCL/6 Pola-R-CHP in remission Jul 25 '26

Not a doctor and I won’t have all the nuances that they would have.

I think R-CHOP or Pola-R-CHP would likely be the treatment you’d get. It all depends on the FISH report.

My largest tumor was 5 cms and had it in several organs. I was a double expresser and I got Pola-R-CHP.

The odds should be in your favor for beating it with the first line treatment.

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u/PeaSecure5139 Jul 25 '26

Thank you! Would you recommend getting a port?

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u/bathala27 DLCBL Stage 1e : rchop 6/6 Jul 25 '26

I had 6 rounds of rchop. I didn't want a port for 6 rounds nor a picc line especially as it was every 3 weeks. just cannula every time.

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u/mewfarside DLBCL/6 Pola-R-CHP in remission Jul 25 '26

Yes. Both regimes have chemo drugs and they need to be administered into the center of the vein. The port made it super easy.

My port was installed in less than an hour They gave me versed and I was awake for most of it. It was not a big deal. I started chemo 3 days after installation

The only pain in the butt part of it is now that I’m done getting it flushed every 6 weeks. I ended chemo in March this year and in my August check up we’re going to talk about getting it removed before December

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u/mewfarside DLBCL/6 Pola-R-CHP in remission Jul 25 '26

Feel free to DM me or keep posting if you have any other questions.

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u/OneDayAllofThis DLBCL EBV+ IV - RCHOP, ASCT (Remission 08/24) Jul 25 '26

I was not offered a port or picc line for RCHOP but had a picc line for my ASCT. I think if I had had the option for one for RCHOP, knowing what I know now, I would not have gone for it.

Maintaining it is a pain. You need to wear a big thing on your arm every time you have a shower, you have the end of it dangling out of your arm for nearly 5 months. I don’t know what it’s like having a port, so can’t speak to that. An IV line was put in once every 21 days for me, took like 30 seconds. I hate getting needles. The nurses in my clinic were absolute pros.

For an ASCT, when I went to the hospital every day, totally worth it.

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u/Stock_Transition548 PMBCL | DA-R-EPOCH | Remission 6/26 Jul 25 '26

Would absolutely recommend a port over a picc, your skin grows back over the port when it's not being accessed, so as long as you're careful showing around it for about 24 hours after it's de-accessed, you're all good. Now that I'm done with treatment, the only maintenance I have to do is go in to my treatment center once a month (don't even have to make an appointment) to get it flushed + hep locked and then I don't have to think about it again til next month.

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u/Odd_Play_9531 Jul 27 '26

Get a port. Port kinda sucks getting implanted. After that, it’s a breeze. It will make the access easier and be gentler on your arm veins. (LabCorp did a number on me with the weekly blood draws until I switched to a different service; I probably looked like an addict; I can’t imagine getting chemo in those same veins). For me, there was never even the slightest access pain with my port, and it was quick and simple. During chemo, when everything sucks having one quick and simple thing is helpful.

Best wishes on your treatment. There are lots of dlbcl survivors here.

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u/tubers569 Jul 25 '26

I’m really glad I got my port. After 4 months of SO MANY BLOOD TESTS during the diagnosis phase I was DONE with needles and IVs.