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Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Am Noticing More Lymph Nodes. I Have MZL. How Have Others Of You Been Able To Tell When Your Disease Is Progressing Or Transforming?

A MyLymphomaTeam Member asked a question 💭
Portland, OR

I have not yet had any treatment, going on at least 6 years. But as far as I can tell, I've had stable (but lowish wbc and platelet counts), no fever or night sweats, and minimal fatigue. Can you tell when your disease is transforming?

6 days ago
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A MyLymphomaTeam Member

Thanks so much. I hope your disease remains stable. Lots of new meds out there.
Hugs to you too.

1 day ago
A MyLymphomaTeam Member

We are all so difcerent. I had twi stable lymph nodes for a year but then they grew. I was treated with chemo and rituximab.
Everythi g shrunk or disappeared . Six months later alk hell broke loise and it was in many organs.
Different chemo radiation

Tben diagnosed with DLBCL
In the interval I was put on Zanibrutinab which I wish had been my first teatment instead of watch and wait. My quality of ljfe has improvdd a lot. If I go downhill again its t- celk therapy.

My message for saying this is act on your instinct and catch things early.
Hugs

1 day ago
A MyLymphomaTeam Member

Thanks. I emailed my doctor and was told to just watch to see if they increase in size. My last PET scan was July 2022. I think I'll ask him to check the nodes himself and see if I need another PET scan. I'm not eager to begin any treatment, especially if I'm feeling OK, my blood counts are stable (but below normal), and I'm not having fevers, chills, or night sweats.

1 day ago
A MyLymphomaTeam Member

I would think periodic cat scans would be needed for progression of lymph nodes. Please ask your doctor!

3 days ago
A MyLymphomaTeam Member

Susan the best way to be on top of your health is to communicate w your oncologist.
We are not Dr’s we can tell at times by symptoms yes however things don’t always appear like text book.
We always want to be ahead of the curve. I would be communicating quick.

5 days ago

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