2 year advanced stage diffused lg b cell non Hodgkin's survivor

[nonie1965]

Does the fear of recurrence go away?

[Tinkerbellcgy]

I never had a fear of relapse. While I have yet to relapse with my DLBCL I have relapsed with my Follicular Lymphoma. There is/was no fear with either Lymphomas because I know that when I do relapse, my oncology team is at the ready to see me through any relapses that may occur. Case in point was last year's relapse of my Follicular Lymphoma. It was caught early, treatment ensued quickly and, for the most part, it was pretty much an event that could best be described as a slight 7 month inconvenience.

My suggestion to you would be to try to set aside any fears you may have of a relapse and concentrate on the positive of living your day to day life as normally as you can. To worry about a relapse is borrowing trouble and robbing you of the pleasure of living your life to the fullest.

[nonie1965 in reply to Tinkerbellcgy]

Thank you for sharing your journey and Your positive outlook.

[oncloudnine in reply to Tinkerbellcgy]

I am one year post diagnosis and treatment of primary mediastinal large B-cell lymphoma. There is still a small area of the lymphoma remaining, but it is not active. On diagnosis and after biopsy ir was read by the radiologist as a massive mediastinal mass. To say I don't worry about relapse would not be the truth. I do think about it, but I don't let it rule my life. The chemo and radiation were brutal, but I came through it. It was definitely the focus of my life for the past year, but things are getting closer to normal. Thanks for your thoughts on the matter. I am working hard to have and keep a positive outlook.

[wmay13241]

In our case the fear of recurrence is always there. We do try to enjoy life but the threat of relapse is there. My wife (follicular lymphoma Grade 2, Stage 4) was diagnosed in 2011 and progressed through R-CHOP, BR, Ibrutinib, and Idelalisib/rituximab. A year ago she entered an NIH CAR-T trial, was infused with her re-engineered CAR-T cells, and had a complete remission. Her one year NIH checkup showed she was still in complete remission. Yet we worry what treatment is left should she progress.

Good luck to you in your journey.

[nonie1965 in reply to wmay13241]

Yeah congratulations

[Jennchap1]

I worried and my family couldn't understand why I wasn't reveling in my remission from LDBC. Well my remission only lasted less than six months before I was diagnosed with Central Nervous System NHL. My NHL had crossed the blood brain barrier. I am in recovery from a stem cell transplant. That is rare, but I certainly understand the looking over your shoulder mentality andmwish youmall the best.

[nonie1965]

Thank you, prayers​

[yooper5]

It lessens. I keep reminding myself that my son is post-treatment for A.L.L. 30 years now. He was also my inspiration for getting through chemo. If a 21-month-old baby can get through it, so can I!