Diagnosed DLBCL NHL 5/7/18, FISH confirmed double hit (MYC + BCL6 translocation)

[deant]

Thank you so much for your kind words of encouragement po18guy.

I freaked out when I got the news that the most recent SUV reading of 3.5 (after 8 rounds of chemo) was higher than the prior SUV reading of 2.6 (after 6 rounds of chemo)

So far, the readings have been:
1. Initial SUV: 27
2. Post round 4 SUV: 4.2
3. Post round 6 SUV: 2.6
4. Post round 8 SUV: 3.5
To me it makes no sense as I was declared in complete remission after round 6.

I'm confused since I was expecting an SUV value less than 2.6.

Can a DLBCL tumor become resistant to chemotherapy during R-EPOCH-DA and grow after showing a really good initial response and shrinking down dramatically during rounds 1-6?

[po18guy]

Oh, lymphoma can do whatever it wants to. However, healing and necrotic tissue will also show a concerning level of SUV in some cases. The sad fact is that you must simply wait for the next scan. DLBCL will not just sit there. It is not known for waxing and waning. It is known to grow, and grow rapidly.

You can be certain that your brain and liver probably show higher SUVs than the nodes do. PETs do not and cannot diagnose cancer - only metabolism. Why the metabolism? That is the $64,000 question.

[pontagf]

Do you know what’s your lymphoma pet/ct scale number? It’s 1 to 5 that the lower the number the better. 1 to 3 are CR. My dad’s petct gave him a 2 post two rounds of treatment. That can be helpful information if you can get it from the doctor

[Lyssa]

If it helps my husband's SUV settled to about 4 after treatment. It was his stomach, which has a higher metabolism than some other organs, but mostly it was thought to be inflammation. He has not any more scans since, so I don't know what happened yet.

[Jotey]

Hi deant other day looking at my daughters remembered your girls and your story.
Hope you are well!!!

[leonm]

Jotey, I just ran across your post today. How is your wife a year later? I was diagnosed with DLBC NHL stage 2EX in the breast in September, 2017 as well! And went through the same treatment, finished in April, 2018. Will be celebrating my 1 year in remission next week!! I have never found anyone else diagnosed w/breast lymphoma since it is rare! Would love to chat with her.