In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 4 years, she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016 (0.6e6 CAR-T cells per kg body weight). At that time she had low tumor burden and 50% lymphoma in her bone marrow. She did not have the expected CRS. Her only side effect was low immunoglobulins that require an IVIG infusion every 4 months.
In July 2019 she relapsed after 38+ months in remission. She qualified for a 2nd NIH CAR-T infusion under the same trial, this time at 6e6 CAR-T cells per kg body weight – a 10-fold increase. This time she had a high tumor burden and 40% FL in her bone marrow; she had not transformed. She had a very strong response – her NIH doctors were pleased. NIH labs in early November 2019 will show whether she is again in remission.
Clinical trial studies show that CAR-T cells may result in long-lasting remissions for many people who have follicular lymphoma that has not transformed. There is more information on CAR-T for FL patients and people considering CAR-T at fnhlben.wordpress.com/
Nearly there
Follicular non Hodgkin's lymphoma
Follicular non Hodgkin lymphoma
Follicular non Hodgkings lymphoma stage 2
Having Follicular lymphoma was a game changer 
