Cancer Back again

I saw my DR again yesterday and I was in full remission after doing R-EPOCH and finishing in December. By the end of February, I had night sweats again, strong fatigue systems and could not eat. The DR was puzzled and now is scrambling for what to do next. Has anyone been in this situation? This is the 2nd time that this has happened to me. Right now I have follicular lymphoma, last time we did a biopsy and this time we are doing another PET and another Bone Marrow biopsy. The last time we did all of this is came back follicular but he was sure it changed and that is why we did the R-EPOCH, but it actually all came back follicular again. Any thoughts?

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  • I feel your pain CarenR. Follicular lymphoma patients often progress so you must continually research to look for the next treatment. About 20% of follicular lymphoma patients have a unique form of follicular lymphoma (likely a new disease category) that progresses within 12 months of chemotherapy - please read the article at fnhlben.wordpress.com/

    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 and has been in complete remission for 12.5 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission.

  • Thank you WMAY for the information. My doctor is actually Stephen Schuster who is doing all of the great work with the Car-T Trial. He is an amazing doctor who I completely trust to come up with the next great thing for me to do. His trials are currently full right now, so we are looking to see who has an opening for me. In the meantime, we are doing all of the testing again to see what is going on right now and how do we maintain until we find the open Car-T Trial. If you happen to know who at NIH I get in touch with, that would be great. We are in the area so could get there ASAP. Thank you again for all of this great information.

  • Dr. Shuster is a fantastic oncology doctor CarenR. During a November 2016 webcase Dr. Shuster said he had 14 follicular lymphoma patients who received CAR-T. Ten patients achieved a complete remission and are still in complete remission, the longest of which is 4+ years.

    As a bridge to CAR-T, my wife took Idelalisib/rituximab for 14 months. She did fine until a PET showed significant progression. Then she was accepted into the NIH NCT02659943 clinical trial under Dr. James Kochenderfer. Our NIH POC is Brenna Hansen 301-435-5605. Please read NCT02659942 Inclusion and Exclusion Criteria before calling Brenna (https://clinicaltrials.gov/ct2/show/NCT02659943).

  • Hi Caren, I was in remission from large DBC after 6 rounds of R-EPOCH IN March of last year. By May, I had the symptoms you described and others, to include balance issues and facial numbness. . My doctors were also at a loss and just kept telling me my blood worked looked good. I finally went to my internist who ordered a Cat Scan and finally an MRI which picked up lesions on my brain. The NHL had crossed the blood brain barrier into my CNS ( central nervous system ). I have since had 8 rounds of chemo to combat lesions prior to a stem cell transplant in Nov of this past year. I am not saying any of this to frighten you, just to encourage you to keep pressing for answers until you can find the help you need. Good luck and God Bless, Jen

  • Sorry and do hope the best for you. No night sweats for me. RChop and rituxin now until July 2017. In remission. Good luck.

  • Caren R, get to The City of Hope or another cancer hospital if you can.

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