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CAR-T Cell Therapy: Introduce yourself and connect with others
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 9 9:21am | Replies (224)Comment receiving replies
Hi, I'm Planaria from Los Angeles. I'm 80 and suffer from post polio syndrome with severe scoliosis...have had joint and muscle pain all my life...... Since April, 2022, I have been diagnosed with rare, aggressive mantle cell Lymphoma and did a bout of chemo for 6 months, starting in June at the City of Hope, Pasadena.......The PET scan showed it was in remission after 6 months (instead of the predicted 18 months)...I am now consulting at the City of Hope, main campus, in Duarte, California. My oncologist, Dr. Tycel Phillips, is supposed to be an expert in mantle cell...... I hope so. Because my initial chemo was Bendamustine, (and Rituxan) evidently there is a bad reaction to the CAR T with the Bendamustine, so I need to wait a one more month until it leaves my body.....I am curious and a bit freaked about the side effects of this treatment. I am now on imbruvica (which has no side effect) and have developed lymphoma tumors in my eye, and my brain.....(right side and basal ganglia). Dr. Phillips wants to start CAR T in February and wants someone to stay with me in the hospital....not too sure what they need to do? Answer???? experience??? thanks so much for your support and information..., Planaria
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@planaria, I can imagine that you're freaked out about the unknown. As you know, every patient is different and everyone experiences CAR-T cell therapy differently. I'm tagging fellow members like @grandpabob @maryangelasmith @elwooodsdad @esperanza3a @pgollinger @henry55 to share how treatment was for them and the role of their caregivers.
Caregivers are integral to treatment. You may find it helpful to understand the role of caregivers in this information that Mayo Clinic wrote to help caregivers prepare.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/
Some of the information may be Mayo Clinic specific, but it can be a place to start and ask questions.
Planaria, Do you have someone who is able to commit to being your caregiver during treatment and after? Often people will have 2 caregivers to split the commitment.