CAR-T Therapy - My one year anniversary

awdqt3346
awdqt3346 Member Posts: 10 Member
edited March 1 in Lymphoma (Hodgkin and Non-Hodgkin) #1

My journey (Currently 46 yo - female)

No medical history until….

January 2023 - diagnosed PMBL (diffuse large B Cell NHL)

March 2023 - June 2023 : EPOCH R / Moffitt Tampa

October 2023 - relapse

February 2024 - CAR-T Therapy / Moffitt Tampa

May 2024 - Remission

September 2024 - Clean scan

March 2025 - Scan in two weeks

I haven’t seen too much on here about CAR-T.

I went through it if anyone wants information from my experience let me know. It went well.

Nerves are back with my one year scan coming up. Hoping and praying for another clean scan.
https://youtube.com/%40ashleymcm2023?si=454sgNXV0nDn1HA2

Comments

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #2

    so for those who want to see what car-t looks like I posted my channel. Now I do not so social media and my friend helped me with this …. There are several videos. I wanted to do this because there wasn’t much available for me to watch last year. I hope it is useful.

  • Dizzneebabe
    Dizzneebabe Member Posts: 3 Member
    #3

    Thank you for creating this channel! After months of various tests, my son, 30 was diagnosed with PMBL last April. He went through two rounds of R-CHOP before the final diagnosis came in and his Moffitt doctor referral changed the treatment to E-POCH. Unfortunately, his PET scan in Jan 2025 still showed activity and this time he had two new small spots in addition to the main mass in his chest. After another biopsy at Moffitt, which turned up negative, a follow up PET scan confirmed the activity has increased even more. His main mass in his chest had an SUV of 30. He is now being recommended for ANOTHER biopsy and CAR T. Because of the location of the main mass, it is next to impossible to get a sample of that and they keep relying on outlying masses, which is obviously frustrating.

    As I'm sure you understand, this sounds scary to us and I'm trying to find out as much info as possible, so not only do we know what to expect, but would love to find people with positive outcomes.

    We live down in the Ft. Myers area, so we've been traveling to Tampa for appointments, when needed. His chemo treatments have been done locally, through Florida Cancer Center. However, it sounds like we are going to have to look for some more semi-permanent arrangements for CAR T.

    It's so wonderful and encouraging to read you're in remission after CAR T. I pray and pray🙏 your upcoming scan is clear!!!

    Take care,

    Rhonda Foss


  • po18guy
    po18guy Member Posts: 1,525 Member
    #4

    Good news indeed. CAR-T is relatively new and generally employed when so-called conventional therapy has proven ineffective. However, that is slowly changing. As to scans, I propose "scanticipation" of a clean scan.

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #5
    https://csn.cancer.org/discussion/comment/1721387#Comment_1721387

    I’m very sorry your son and your family are going through this. After going through CAR-T at Moffitt and seeing your son is receiving treatment at the same place I will say they are excellent. I was there in Tampa for 39 days. 14 in the hospital on the BMT floor. We had to close up our home on the east coast in Stuart and rent a home over in Wesley Chapel. If you have any questions please don’t hesitate to ask me. I’m here for you. I go Wednesday (Ash Wednesday) which my name is Ashley so I look for signs haha…. Anyway Wednesday is my scan.
    please reach out if you need anything seriously…. I only shared my story to help it’s not normally something I would do I’m usually private … but we’re all in this together. Best of luck - I will pray for your family. —- Ashley

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #6
    https://csn.cancer.org/discussion/comment/1721409#Comment_1721409

    I loved “scanticipation”!!!! Thank you

  • Dizzneebabe
    Dizzneebabe Member Posts: 3 Member
    #7

    Thinking of you today, Ashley! 🙏

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #8

    Getting ready to make the drive!
    Thank you for your support!

    🙏🏻

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #9

    Still cancer free!!!! My CAR-T cells are still active and today is a great day. One year cancer free and still going!

  • po18guy
    po18guy Member Posts: 1,525 Member
    #10

    Wonderful news! Thank you for letting us know!

  • Dizzneebabe
    Dizzneebabe Member Posts: 3 Member
    #11

    That is fantastic!!!! Breathe easy! What’s next? Another scan in six months?

  • awdqt3346
    awdqt3346 Member Posts: 10 Member
    #12

    Yes my next scan is September 4 and nothing to do until then. I am so grateful. Thank you for checking in with me! Please let me know if there is anything I can do for you and your son.

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