Looking over my shoulder

Hi everyone,

  • I was diagnosed with stage 4 follicular lymphoma Nov 2015. I was 54 yrs old and single Mom of 3.  I did 15 rounds of chemo and it is dormant now for 2 years.  I was having blood and CT scans every 3 months, and finally 6 months ago my labs finally were normal for the first time in almost 10 years! So my Dr moved my tests to every 6 months. About 3 months ago, the hair started falling out again, and I noticed neck pain and the lymph nodes in my neck had enlarged and were causing me neck pain. The random sweats started all over again too,and I knew the cancer was beginning to grow back again.  Finally had seen my oncologist last Friday, and the nodes in my neck grew 2 millimeters. That's not much, but it's beginning again. I know you all know how hard it is to live with the 6 letter word.  All I know is I have tried every diet and therapy I can afford to get healthy and stay healthy, but ultimately some of us are fighting a losing battle.  This disease doesn't care how old we are or how much we are needed by our families.  I'm still finding my way into accepting death maybe sooner than I am ready for, and trying hard to make sure my kids are ready for the worst of it.  I try to stay positive and keep active as normally as possible, but it gets more difficult to find the right balance without support of a partner or close friends. I live in another state than my closest friend and family, and therapy is my only outlet for my fears. I don't like to make things harder for my adult kids by telling them my fears because death is a natural part of life, its that loss of love and support that makes death even harder for some of us. I know as I have lost 2 brothers, a sister in law, a nephew, a stepson and both of my parents.  It was early tragedies except for my parents, and I know how hard it is to be left to deal with the loss and financial burdens of a death.
  • Are there any other Follicular lymphoma fighters with stage 4 who have it under control for more than 5 years? I would really like to meet you and maybe we could help support one another when we can.  Living with Incurable has been taking a toll. Hope to hear from someone and share their experiences. Thank you for listening!
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Welcome; I hope you find others to connect with.

BFAC doesn't list the different kinds of Lymphoma, but, there are Follicular lymphoma members in the "non Hodgkins lymphoma" members default (above). If you go to the top of the page and click the "members" button, then you can select the "Non Hodgkins Lymphoma" group; you can look at the group of 253 members or use other defaults, and stages as well. It looks like at least half have follicular lymphoma and over a quarter living with stage 4 . You can pick their "support" buttons, or write them directly; also you can select "Non Hodgkins Lymphoma" in your profile, and they will get an email that you've joined, and perhaps contact you.

I have taken an interest in B-cell Lymphoma, my sister just found out she has it.

I hope that might be helpful.


Thank you so much E, and I wish your sister and family the best through her journey!

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February 26, 2019

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