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Could Those Living With Slow Growing Lymphoma Doing Watch And Wait Offer Some Advice?

A MyLymphomaTeam Member asked a question 💭
Ocala, FL

Marginal zone lymphoma growing and changing lymph nodes on scans, no other physical symptoms.

November 26
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A MyLymphomaTeam Member

I have marginal zone as well in my bone marrow only. Currently on watch a wait. Have another mri in January to compare to the one I did in October to see if the lymphoma is growing or popping up in new places. Watch and wait sucks because you don’t feel like you’re fighting but to put it in boxing terms it’s like a rope-a-dope. You’re out there bobbing a weaving until you’re ready to attack. I have struggled with it but the science behind it makes sense. Especially since I’m only 38 why expose yourself early to the potential harms of chemo when the chemo could hurt my body right now worse than the cancer is doing. Also you don’t want to narrow down your treatment options if you (or your cancer) becomes resistant to one treatment or another.

November 26
A MyLymphomaTeam Member

@A MyLymphomaTeam Member - Good reasoning & explanation on "Watch & Wait" ❤️🫠👍 All the best to you!

November 26
A MyLymphomaTeam Member

Hello.. I’m on Watch & Wait. I was diagnosed in May, 2024 of Follicular Lymphoma,
Grade 2/Stage 3. Being on this protocol took some getting use to. My 3 mo. scan showed very little growth or change. I do have some low blood work numbers that they are keeping an eye on, but otherwise my next scan will be this coming April/May. My doctor explained that this is a marathon, not a race, and that because there is no cure, they want to hold off on the start of treatments as long as possible…. (keeping the treatments to a lower number that way, if possible). I did recently read an article on this site on Follicular Lymphoma and it said the sooner the detection and treatment, the better the outcome. SO, that didn’t quite sit with Watch & Wait I didn’t think… so that confused me a bit. Going to ask my doctor about that next time I see him. I am opting to wait until at least this next May before I consider treatment… unless I have any new symptoms that is. Hope this long note helps a bit. Be well ❤️

November 26
A MyLymphomaTeam Member

I have had NHL for 14 years and when it “wakes up” I get another round of Rituxan, usually about every three years.

November 26
A MyLymphomaTeam Member

Hi KatharineFichter - I agree with you - perhaps another little more time is needed to determine if the next scan "very little growth or change" remains the same or if treated would cause a reaction like irritating, awakening, speeding up rather than leaving it alone to teeter out. OR, Zapping it to kill it! All the best to you 🫠❤️ Keep us posted!

November 26

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