Atypical lymphoid proliferation - colon, and neck?

[CoCoLuna11]

Hi,

I haven't posted here yet. I was diagnosed with CLL at age 43 in 2012 (13Q, Unmutated) and was treated in 2015 with Bendamustine/Gazyva. I had a routine colonoscopy Fall 2019 and had a 3.7 cm lymphoid infiltrate in colon. I had a terminal ileum and right colon resection and after a long wait on the pathology from Stanford was diagnosed as atypical lymphoid infiltrate/reactive with lack of immunophenotypic and molecular evidence of clonality. Now, nearly 8 months later, I have noticed a node on my left side neck about an inch above clavicle, relatively deep. As we didn't scan the neck back in the fall, I'm not sure how long it's been there. Blood counts are all normal and BMB in fall revealed no evidence of CLL. I'm concerned (and that's putting it mildly): 1. this is a transformation to DLBCL, or 2. addition of another lymphoma (pathology noted possible concern for low grade such as follicular or extra nodal marginal zone- not sure if that's considered Richter's?), 3. another atypical infiltrate in new location...something else? (Incidentally, I did have a high SUV back in the Fall in area of Waldeyer's ring but scope showed nothing of concern).

I'm hoping to get an ultrasound this week and we are checking LDH.

Anyone out there have anything remotely similar?

Thanks!

Misty

[PlanetaryKim]

Hi Misty. I haven't personally had anything similar, but just wanted to say hi and welcome!

[CoCoLuna11 in reply to PlanetaryKim]

Thank you! Hi!

[studebaker]

Good morning Misty and welcome to this amazing group. I am sure someone here will give you good response to your troublesome questions. There are a lot of very smart people in our group with wisdom and understanding of this disease.

I just wanted to say Hi.

Dana

[CoCoLuna11 in reply to studebaker]

Hi Dana, thank you. I have been doing a lot of online searches and can’t seem to find others with this type of thing. It’s frustrating. Take care.

[Judyanne]

Hi Coco, I was originally diagnosed with Sll. Scans few years latter found nodules in numerous organ tissues (parotid, submandilar, thyroid, lungs, spleen) and diagnosed extranodal marginal zone. It is low grade and not Richter’s. My first pathology report said atypical CLL or enmzl, most likely enmzl. Second opinion said enmzl or smzl. You can get a second opinion on pathology reports.

[Judyanne]

There is a LRF webinar 6/16 in the pm on marginal zone by a doctor very knowledgeable on marginal zone. I had a suv of 10.5 on lung nodule but it wasn’t a transformation.

[CoCoLuna11]

Judyanne,

Thank you so much for your reply! I had been reading about enmzl. Today I found out my LDH is 93 so I have calmed down a little. But I saw through the ultrasound that I definitely have some nodules in my neck 2cm at largest measurement.

Can I ask:

-were you treated for the enmzl and if so what?

-did you ever have a test for helicobacter pylori? I read that it is often associated with enmzl.

-did you have any b symptoms correlated to the nodules?

I really appreciate your reply. I have been wondering if there are many CLL folk with secondary lymphomas such as this.

Misty

[CoCoLuna11]

Today I learned from my ultrasound that I have 6-7 lymph nodes on the left side of my neck each about 1 cm with 2.1 cm being largest. I am waiting to hear from my CLL specialist but really concerned about so many nodes in one location. I am really hoping CLL is just silently progressing! But fear it is something else.