CAR T Therapy

[DaleFL]

I am just curious if anyone in here has had CAR T therapy. I know it is not yet approved for CLL, although clinical studies are ongoing. Or, if anyone knows where I can read about people with CLL who have experienced it. I hope the medical community does not give up on gene therapy. I understand that there are still many issues that need to be worked out, such as minimizing the toxic effects of the therapy. Anyway, I would also love to hear what others think about gene therapy and whether it would be something they would consider as a treatment option. Thanks. Dale.

[Cllcanada Top Poster CURE Hero]

Here is the story of a high risk CLL patient, Karen Koehler, who entered the Upenn Car T cell trial

I warn it is not an easy read.. these treatments are experimental, but projects are advancing ... Karen is doing well from what I gather...

statnews.com/2016/08/23/can...

Another patient story

fredhutch.org/en/news/cente...

There are more patient stories on YouTube and there is someone on HU that has experience ...

[DaleFL in reply to Cllcanada]

Thank you. It seems promising. Although it is not yet available, it may be another treatment option in the near future.

[wmay13241]

In November 2011, at the age of 65, 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 3 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 now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of October 8, 2017, she has been in complete remission for 19 months. Her only side effect is low immunoglobulins that require an IVIG infusion every 4 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T at lymphomation.org/programing...

[DaleFL in reply to wmay13241]

That is wonderful news. I am so happy to hear that your wife obtained a CR with CAR-T cell therapy. Thank you for sharing. I hope the researchers continue to finding a way to effectively administer CAR-T cell therapy in CLL.

[Cllcanada Top Poster CURE Hero]

Here is the story of Cloud Bannick, a CLL/Richter's/SCT patient

First to get a complete response...

fox10tv.com/story/35730785/...

[DaleFL in reply to Cllcanada]

Wow. That was great. Thank you so much. 🙂

[Cllcanada Top Poster CURE Hero]

youtu.be/5KNh2l5IO-8(Not working as expected?)

[DaleFL in reply to Cllcanada]

Thanks again. I don’t know how you find all these great links. 🙂