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Update and question about relapse...

WilliamJ

New member
I haven’t posted here since 2016....

In late 2015, I was diagnosed with Gray Zone Lymphoma, stage IV.

Starting 12/31/15, I began six months of DA-R-EPOCH at Emory University Hospital in Atlanta.

From April, 2016 until now, every CT was flawless, showing no evidence of disease.

Until now....

Last Tuesday I got my annual CT. My onc called Friday to say two nodes in my abdomen were enlarged.

I will type verbatim from the radiology report:

“Worsening mesenteric and retroperitoneal adenopathy. Index mesenteric node measures 1.4 x 1.5 cm, previously 0.9 x 1.1 cm. Index left periaortic node measures 1.2 x 1.7 cm, previously 0.7 x 0.9 cm. Impression: Adenopathy concerning for lymphomatous recurrence.”

My onc says it’s unlikely it’s a recurrence due to the length of time I’ve been disease free, and says time is in my favor, then again, he hedged, as all good doctors do, and said if I was his brother, he’d recommend a follow up PET, and that’s what he’s recommending for me. Also, he pointed out that my LDH cancer marker was low (96) which is good. I have no symptoms that he or I can discern.

My PET is set for next Friday.

I haven’t been scared with any prior scans. Actually, when I was on chemo back in 2015-2016, I “knew” the scans would be good because the chemo actually made me feel better (I had masses in my lungs, which caused an aggravating cough, and the chemo did away with it). For some reason, maybe because it’s out of the blue, this one makes me more anxious. Has anyone experienced something like this? Thoughts?
 
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andym

Super Moderator
My thought is that everything your onc has said and is recommending sounds very sensible. Time is on your side and a PET is the way to be sure. I also think that those nodes are still pretty small. The odds of having a scan just after that started to grow aggressively is low. More likely is some other cause that made them grow a little bit some time ago.

Let us know how the scan goes.

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po18guy

Active member
Sorry to hear this. I would think that, at some point, they would want to go in and grab a piece of one of the nodes. Due to their location, it sounds like it might be a needle biopsy, which is not all that bad, normally.

Needle biopsies are not very reliable for initial diagnosis, but in your case, they would know exactly what they are looking for in the sample. Might just be me, but a PET seems a bit like putting the cart before the horse.

If they biopsied those nodes and had an answer, PET would either be unnecessary in the case of reactive nodes, or would be used for staging in case of a recurrence. But, opinions, like fuel mileage, vary.
 

WilliamJ

New member
My thought is that everything your onc has said and is recommending sounds very sensible. Time is on your side and a PET is the way to be sure. I also think that those nodes are still pretty small. The odds of having a scan just after that started to grow aggressively is low. More likely is some other cause that made them grow a little bit some time ago.

Let us know how the scan goes.

Sent from my iPad using Tapatalk
Thanks Andym,

You make an interesting point. I hadn’t thought about the timing of the scan relative to the nodes’ size. For further information, my previous CT was in April, 2019.

I’m also encouraged by my labs, but then again, my LDH has been low since I finished chemo in 2016.
 

andym

Super Moderator
Glad to be of some help.

I also see a logic for doing the PET before considering a biopsy because it can help decide which node to target, if that seems like a good idea. But I’m still hoping for nice cold nodes and just keeping an eye on them.


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WilliamJ

New member
Friday's PET is getting closer. Praying for cold nodes.
Hoping there's something to the idea that length of remission makes relapse less likely. Last round of DA-R-EPOCH was April, 2016.
 
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po18guy

Active member
Do you have the expression of cd30? You need a new biopsy.
"A Rare Case of Grey Zone Lymphoma Successfully Treated with Brentuximab Vedotin and R-CHP Chemotherapy"
https://www.hindawi.com/journals/crionm/2019/4121234/
Great point. Even though Seattle Genetics is working on a CD20 Antibody-Drug conjugate, it is not on the market yet (trials, maybe?). However, CD30 is a somewhat unusual CD to be expressed by a B-Cell Lymphoma. So, that would be another option - IF - it is even a relapse.
 

fighterm

Member
Great point. Even though Seattle Genetics is working on a CD20 Antibody-Drug conjugate, it is not on the market yet (trials, maybe?). However, CD30 is a somewhat unusual CD to be expressed by a B-Cell Lymphoma. So, that would be another option - IF - it is even a relapse.
The Grey zone lymphoma usually has the cd30 expression. Its an intermediate histology between Hodgkin's and the dlbcl. But the markers can change after 3 years.
 

WilliamJ

New member
Got PET results from onc today. SUV of one of the nodes was 8. Because of the size of the node and where it is, he recommends a needle biopsy.

Also, I went back and looked at all my CTs since 2016. It appears that in October of 2017, I had an equally large node (virtually same size) arise in the same (pelvic) area. We didn’t have a PET done then, and by my following (April, 2018) CT, it had gone down. This is notable to me because I do have diverticulosis and we know there are other, non-lymphoma causes for node activity. When I mentioned it to my onc, he seemed interested.

Onc not freaking out, nor am I, and I’m waiting on call to schedule biopsy. Will continue to update.

P.S. oh, and I’m not having discernible symptoms of any kind.
 
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cocamoxb

Member
Onc not freaking out, nor am I, and I’m waiting on call to schedule biopsy.
You're a model patient we could all aspire to be. Great that there's no other symptoms!

It's always odd saying that I hope it's another disease, diverticulitis in your case, but let's hope that's it.

All the best, cheers!
 

andym

Super Moderator
It is great that you are taking this in stride. For the needle biopsy, will it be a core needle biopsy with the samples being checked by a pathologist during the procedure? That approach gets very good results and is way better than fine needle aspirations. I've had a few of the core needle biopsies and always got clear results.
 

WilliamJ

New member
That’s a good question to ask. Thank you, Andym

I guess I’m not freaking out because a) I don’t think that would help, and b) I’m looking back at that CT from October, 2017 and I had an equally large node in the same spot that went down by itself. Given how aggressive my GZL was, that clearly wasn’t my cancer, so my thinking is this may be no different, especially as my diverticulitis/diverticulosis has been acting up on the same (left) side.

The PET? Well, my understanding is that an 8 isn’t awful (I know people here have had much worse), and I’m told other things such as infections, inflammation, etc can cause a PET to light up.

Maybe I’m being naive, and if I am, please tell me, but this is what I’m thinking now
 

Sue B

Active member
You are right that there are other things that can cause the SUV to be elevated like infection or inflammation esp. as in your case diverticulitis. I always believe that it is best to wait for tissue diagnosis before jumping to conclusions. You also mentioned that your nodes were about the same size as in 2016, which is also good news. Best of luck with the biopsy, keep us updated on your results.
 

andym

Super Moderator
And you are right that an SUV of 8 is on the low for aggressive lymphomas. I'm basing that on a study I remember about the SUV values for follicular and transformations to DLBCL.

You're not being naive at all. There are just a lot of us that don't manage to stay calm!
 
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