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Thread: Blincyto (Blinatumomab)

  1. #1
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    Blincyto (Blinatumomab)

    My husband is in-patient and receiving Blincyto for relapsed ALL ph+ B Cel . Does anyone have any experience or knowledge with this therapy? Since 9/27, treatment has been stopped and restarted three times. I see information on the website but I don't know if I'm reading and understanding it correctly. Any information is appreciated.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this. Blincyto is known to cause neurological problems. Something on the order of 2/3 of patients experience some form of neurological difficulty, but most resolved when treatment was discontinued - I would guess either temporarily or permanently.

    The drug itself is only four years old and only about 1000 US patients even qualified for it. The chance of finding someone is rather slim. That is the sad fact of having a rare and aggressive cancer, especially in the relapsed setting. Depending on the circumstances, at some point we can become a patient group of one.

    It can get lonely.

  3. #3
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    Thank you, po18guy. My husband experienced cytokine release syndrome after 6 hours with the first two attempts so treatment was held for two days. On the third attempt, he experienced a high fever with low blood pressure after Day 7 increased dosage. He is now Day 3 (4th start) with the increased dosage set for Day 7. I wish I knew more about Blincyto but now that you mention 1000 patients, I can see how it would be difficult to find information. I'm thinking they are learning a lot from my husband.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    I believe the number 1,000 was for those who technically qualify, due to relapsed ALL - but not the actual number of users, so it may be far less. I would hope that the hematologist has a plan B, C and D at the ready if reactions continue to be negative.

    I see that MD Anderson in Houston is performing research, not into CAR-T, but CAR-N/K cells, as they apparently do not exhibit the cytokine storm as seen with CAR-T.

    https://www.mdanderson.org/publicati...for-b-cel.html

    And a 2 minute vid:

    https://www.youtube.com/watch?v=H1QLnNlmTJA

    At this point, I would certainly consider any and all clinical trials:

    https://www.clinicaltrials.gov/ct2/r...e=&city=&dist=

  5. #5
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    Thank you for taking time to send this to me. I've read everything and watched the video. My husbands dr has mentioned CAR T but not the N/K. As much as I've searched, I haven't found any of this. Thank you so much.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    You are very welcome. I can connect the dots, but I can't tie my shoes! Here's another source: OncologyTube:

    https://www.oncologytube.com/c/1/Acu...lasticLeukemia
    Last edited by po18guy; 10-15-2018 at 07:59 PM.

  7. #7
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    Interestingly, I can understand the videos. I've heard the heme oncologist talk about all of the information in the videos.
    Again, thank you.

  8. #8
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    Cycle 1 didn't go as well as I had hoped. After completion of cycle 1, a bone marrow biopsy was performed. Results were less than favorable. Hypercellular marrow with marked involvement by persistent lymphoblastic leukemia (approximately 50% involvement) Moderate reticulin fibrosis In addition to Philadelphia chromosome, a second mutation is present. Philadelphia Chromosome mutation(s) V299L T351 I

    The suggested treatment is, continue with cycle 2 and apply for CAR T trial. CAR T trial come with chemo therapy and a 60% CRS (Cytokine Release Syndrome)

    I'm so sad.

  9. #9
    Super Moderator Top User po18guy's Avatar
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    If cycle 1 was marginal, why a cycle 2? Is he being treated at Moffitt?

  10. #10
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    Yes. He is. Do you think we should go straight to CAR T and no Blincyto? I am interested in your opinion because we don't know.

 

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