Stage 3 Follicular Non-Hodgkins Lymphoma..and Wondering Why No Treatment Has Been Recommended... | MyLymphomaTeam

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Stage 3 Follicular Non-Hodgkins Lymphoma..and Wondering Why No Treatment Has Been Recommended...
A MyLymphomaTeam Member asked a question 💭

I am reading here that a lot of people have been receiving treatment with a lesser stage (I & 2) than I have. (I have Stage 3 *follicular* non-hodgkins lymphoma). I have been on watch and wait since my diagnosis in April 2019. I'm wondering why the oncologist is holding off on any treatment. Why wait until it gets bad? Has anyone gotten treatment while being asymptomatic? If you do have symptoms, at what point did your Dr decide to start treatment?

posted November 13, 2019
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A MyLymphomaTeam Member

I was diagnosed with Stage 3 also. I just saw my oncologist for the first time this week. Since FL is a non-aggressive, slow growing disease, if the patient isn't having any symptoms that are interfering with their life, treatment is often not started. The reason is that treating someone who is having no symptoms really does no good. The only symptom I have is enlarged lymph nodes.The only noticeable ones are on my neck (what first caused me to go to my doctor). My oncologist said that if I start to experience symptoms such as drenching night sweats, extreme fatigue, unexplained weight loss, fever, or continued enlargement of lymph nodes, that I should come in. Those types of symptoms would warrant treatment. The goal of treatment would be to put the disease in remission. In the meantime, I will be monitored periodically with blood work and imaging. I was told that I would likely die from something else and not FL. Hope this helps. :-) (I am a patient at Wake Forest Baptist Health in Winston-Salem, NC. This is a teaching hospital. My oncologist's total focus is Lymphoma.)

posted January 29, 2020 (edited)
A MyLymphomaTeam Member

I was diagnosed thirteen years ago with Stage three Non Hodgkin Follicular lymphoma at Mass General in Boston with Dr. Takvorian. He gave me the advise to go home and LIVE. I am a patient with Dr Glenn at Huntsman Cancer. I have been on wait and watch for 13 years this fall. I have been healthy. I too, was very nuts about this course but have been told many times that I will know when I am in trouble. Hope this helps. Connie

posted June 16, 2020
A MyLymphomaTeam Member

I was diagnosed in 2004 with Follicular NHL wasn't told of any "stage". I was also told to wait n see, but I wanted to get it over with the chemo so I went thru 6 months of chemo, n have been in remission ever since. I know everyone is different but to me having the "wait n see" attitude hanging over me all the time was worse than going thru the months of chemo. Good luck with anything u decide.

posted March 9, 2020
A MyLymphomaTeam Member

I was diagnosed April 2019 with same non Hodgkin follicular lymphoma and on watch and wait also. I have been told it could be years before I’m symptomatic.

posted May 29, 2020
A MyLymphomaTeam Member

I got diagnosed with stage 3b FL in Sept..2015... which I was having night sweats, my lymph nodes and spleen were swollen, i had swollen nodes in my neck,
under arms, behind my stomach, groin areas, and 20% in my bone marrow... my oncologist suggested I get a 2nd opinion which I respected very much, so I did at a cancer research hospital in Texas... my oncologist wanted to do R- chop, but the Texas hospital suggested I only do the R part which is for Rituxan, which is an immuno therapy drug and I've been in remission since my treatment... so the watch and wait is better if you have no symptoms... no need to rush into the chemicals which will kill you faster than the cancer itself.... so the longer without the treatment the better off you are... hope this helps you! I know it's confusing as im still learning as well...

posted February 21, 2020

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