Aggressive Follicular Lymphoma Now In NIH CAR-T Clinical Trial

[wmay13241]

In 2011 my 64 year old (at that time) wife was diagnosed with follicular lymphoma. She relapsed within 4 months of R-CHOP (6 cycles) and within 2 months of bendamustine/rituximab/velcade (6 cycles). This is when her oncologist said she had an aggressive form of follicular lymphoma. Next she was in a Phase 2 Ibrutinib clinical trial that lasted 12 months followed by 14 months of Idelalisib/rituximab. After she progressed for the fourth time,in early 2016 she was accepted into an NIH CAR-T trial and was infused on March 2 (her new birthday). She is now in complete remission.

[Crusee]

Hello.

I don't understand the terminology used here but it sounds like your wife has been through a very difficult time.Indeed for both of you.

It's good to hear that she is now in remission What a relief for the two,of you and hopefully you can make up,for all,that lost time.

Enjoy yourselves.

Take care stay well.

Crusee

XX

[maria50ec]

Lovely picture and wonderful news! My NHL has transformed now after 7 years of all kinds of treatment, including stem cell transplant, into aggressive B cell so we are exploring clinical trials at Southampton.

may you both continue to live well and cherish every day.

[nickybeckett51]

That's lovely news

[krayburn Partner]

Hi wmay13241, so glad you could be a part of our community! That's wonderful to hear your wife is in complete remission

[2255]

Way to fight! No quit in a warrior! You are Blessed!

[wmay13241]

Here is some good news we learned from Dr. Steven Schuster (one of the gurus in CAR-T) during today's Lymphoma Research Foundation "Advances in Immunotherapy in the Treatment of Lymphoma" teleconference Q&A on November 17. Results from his UPENN Abramson Comprehensive Cancer Center follicular lymphoma CAR-T clinical trial showed:

* Of his 14 follicular lymphoma patients 10 (72%) achieved a complete remission.

* No patient achieving a CAR-T complete remission has relapsed.

* The average time in complete remission today stands at about 2 years.

* If your complete remission is 2 years or greater you have the same survival odds as someone who never had follicular lymphoma.

* After 1 year about 50% of his follicular lymphoma CAR-T patients no longer need IVIG infusions.

[pollyg2016]

Hello, my partner might be offered CAR-T therapy for his mantel cell lymphoma. How has your wife found the treatment? Was she in hospital and for how long? Did she have any bad side effects? Is she still in remission? We have heard the success rate is very low and side effects very, very bad

[wmay13241]

In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 2. 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) (partial response), bendamustine/rituximab (6 cycles) (partial response), and Ibrutinib (12 months) (partial response). Then she took Idelalisib/rituximab as her fourth treatment as a bridge to an NIH CAR-T clinical trial. It worked great for 14 months then a PET scan showed she progressed again. She was put 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 – CRS/fever for 5 days - her NIH doctors were pleased. NIH 2-month checkup labs in early November 2019 showed she was again in remission. Unfortunately, at her 6-month post-infusion on March 4, 2020 her PET scan showed a ~1.5 cm lymph node in the lower right side of her back. A March 5 core biopsy confirmed it was again follicular lymphoma Grade 3A – this took her off the NIH clinical trial. She is now in Cycle 6 of the NIH ViPOR trial (NCT03223610).

There is more information on CAR-T for FL patients and people considering CAR-T at fnhlben.wordpress.com/

Other NHL sites I visit often are:

lymphobob.blogspot.com/

lymphomation.org/

lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)

lls.org/