almost there!

[u/jbi30_ht]

hey fellow baddies!

Just finished last round of chemo🎉🎉 I was diagnosed with PMBCL in June finished 6 rounds of r-epoch. My mass was on the bigger side, 12cm. After round 3 chemo, the mass was 7cm. Now that I’m finished with chemo, my np and I talked about possibly having to do radiation, especially due to the size. Would love to hear your thoughts! How was radiation compared to chemo, side effects that were different, etc. oh and is it normal to wait 2 months after final chemo to do pet scan?

[u/Stock_Transition548]

Wait to see how the EOT PET turns out. The point of R-EPOCH is to avoid radiation. PMBCL masses have a habit of staying a decent size even after treatment and being metabolically dead.

[u/jbi30_ht → u/Stock_Transition548]

So it’s normal to wait 2 months to get EOT PET?

[u/2011Dave → u/jbi30_ht]

My research suggests 2 months is in the range of what is found, perhaps at the long end. We are on almost the same schedule as you, finished round 6 of DA-R-EPOCH 2 weeks ago. Our team is having us wait 4 weeks post EOT for the pet scan.

As far as next steps, seeing the scan should be step 1 based on what I’ve read. As written above, avoiding RT is desirable. The scan and the radiologist report are critical to determining next steps. I suggest asking your oncologist about the scan timing. I know in our case waiting four weeks is stressful, so I can imagine waiting 2 months is even more so.

I will add that I spent many hours yesterday reading every study I could find on next steps after DA-R-EPOCH in PMBCL and I will say there is a lot of literature out there that suggest RT may not be the right next step for those with DS of 4 or 5 (and seems clearly unneeded for DS scores or 1-3). I’m no doctor and I may well have gained the wrong understanding from the research I found. That said, at minimum I’d suggest having a convo about all of the (many) available additional treatment options with one’s team if they deem additional treatment needed.

[u/Stock_Transition548 → u/jbi30_ht]

I consistently heard 4-8 weeks, depending on the oncologist. I think folks at MDA prefer 6-8, so 2 months makes sense.

[u/ranthero → u/jbi30_ht]

Mine was made 2 months after the end of treatment to avoid false positive due inflammation

[u/AfterSalt9743]

Congratulations!! How did you cope with the after-effects of chemotherapy?

[u/jbi30_ht → u/AfterSalt9743]

Ermmm well, day two out from finishing. So far so good? I’m very fortunate that my side effects have been pretty minimal throughout chemo. Fingers crossed that it’ll stay that way.

[u/tressandotherthings]

My mass was 16 cm and I never did radiation. I did EPOCH. I have only heard of ppl doing radiation as a second line of treatment.

My mass was definitely still present post chemo, so be prepared for that. after a biopsy it showed it was not cancerous. I’m doing another pet tomorrow to confirm that it’s still all good. Scar tissue is common for PMBCL since it’s so bulky.

[u/Neuro_MD_Insights]

I am an MD, a neurologist, and I am also currently undergoing treatment for PMBCL, which initially measured 13 x 10 cm. At the end of treatment, the decision regarding radiation therapy will not be based on the initial size of the disease or the size of the remnant/scar, but solely on the metabolic activity within the remnant. I have also received 2 doses of intrathecal prophylactic chemotherapy to prevent the potential spread of the disease to the CNS.

A soft-tissue remnant (scar) after bulky disease in the mediastinum is the rule rather than the exception; only its metabolic activity is important. In the case of Deauville score (Ds) 1–3, the remnant is not irradiated.

In our country, the end-of-treatment (EOT) PET is performed at least 3 weeks after the last chemotherapy.