5 ms·

You'll want to sign them up for a clinical trial. Only CAR-T cell therapies that are FDA approved are for leukemias. [ and as a commentator points out, for lym

You'll want to sign them up for a clinical trial. Only CAR-T cell therapies that are FDA approved are for leukemias. [ and as a commentator points out, for lymphomas, I had always thought lymphomas were a subset of leukemia. mea culpa ]

msla 4y ago
I personally got CAR T-cell therapy (Yescarta) for Primary Mediastinal Large B-Cell Lymphoma: https://www.yescarta.com/ https://www.yescarta.com/ https://en.wikipedia.org/wiki/Axicabtagene_ciloleucel https://en.wikipedia.org/wiki/Axicabtagene_ciloleucel > On 1 April 2022, the FDA approved axicabtagene ciloleucel for adults with large B-cell lymphoma (LBCL) that is refractory to first-line chemoimmunotherapy or relapses within twelve months of first-line chemoimmunotherapy. I was in a clinical trial, though, but that was to determine the effectiveness of Anakinra in preventing serious side-effects; in my case, I only got a few mild fevers, which is the biochemical equivalent of winning the lottery, in a lottery where losers end up comatose and intubated. https://en.wikipedia.org/wiki/Anakinra https://en.wikipedia.org/wiki/Anakinra
- sergiotapia 4y ago
  I am very happy for your outcome, can't imagine the stress and fear you felt. So glad you had success, let's hope this becomes commonplace and people are saved from such a wretched fate.
  - msla 4y ago
    I'm also very happy, especially since I was in complete remission as per a PET/CT scan a month after infusion after my cancer had survived two previous lines of chemotherapy (DA-EPOCH-R and R-GemOx) and had even shrunk but became more metabolically active after the second line. I'm still in complete remission, with further destruction of the tumor, six months after infusion, and there's some evidence the CAR T-cells can persist a decade after infusion: https://www.nature.com/articles/s41586-021-04390-6 https://www.nature.com/articles/s41586-021-04390-6
    - worthless-trash 4y ago
      This story made my day.
- aledalgrande 4y ago
  We need more stories like this.
dumbmrblah 4y ago
Incorrect. Yescarta, Tecartus among others are approved for certain types of lymphoma. Multiple myeloma has Carvykti and Abecma https://www.cancer.gov/sites/g/files/xnrzdm211/files/styles/cgov_article/public/cgov_image/media_image/2022-03/FDA%20Approved%20CAR%20T-Cell%20Therapies%20Table.jpg?itok=O-YYUqxS https://www.cancer.gov/sites/g/files/xnrzdm211/files/styles/... With respect to institutions: East coast: Sloan Kettering in NYC and Dana Farber in Boston Middle America: MD Anderson in Houston West coast: City of Hope and UCLA in Los Angeles.
- cauthon 4y ago
  Hutch/SCCA?
- jcims 4y ago
  Took my wife to MSK for a second opinion on the treatment plan for her ovarian cancer. They were beyond useless. They wouldn’t say or recommend anything until the current treatment plan (eg round of chemo or surgery) was complete, yet it was incredibly difficult to arrange time with them to review results when that time came. Basically we got nothing from them. Not sure what my point is other than if you’re getting a second opinion, discuss how the provider will integrate their assessment with the existing treatment plan. And at the end of the day it’s the doctors and nurses you get that make the difference in your care, not the building.
  - voisin 4y ago
    I hope that this didn’t negatively impact your wife’s outcome and that she got better care elsewhere.
    - jcims 4y ago
      Thank you. We visited Cleveland Clinic as well and received very similar results. I briefly thought about starting a class for cancer patients to help them navigate the medical system in the US. I had to try to learn to fly from the front seat of the plane and it was a bad experience. She passed in 2020, just two years after diagnosis.
Enginerrrd 4y ago
How do they handle controls in cancer trials? Is it compared against what is otherwise the standard of care?
- mcbain 4y ago
  There's not one answer but often: yes, split into "arms" receiving SoC or trial. Details on this is part of the trial listing which is usually on https://clinicaltrials.gov/ https://clinicaltrials.gov/

msla 4y ago

I personally got CAR T-cell therapy (Yescarta) for Primary Mediastinal Large B-Cell Lymphoma: https://www.yescarta.com/ https://www.yescarta.com/ https://en.wikipedia.org/wiki/Axicabtagene_ciloleucel https://en.wikipedia.org/wiki/Axicabtagene_ciloleucel > On 1 April 2022, the FDA approved axicabtagene ciloleucel for adults with large B-cell lymphoma (LBCL) that is refractory to first-line chemoimmunotherapy or relapses within twelve months of first-line chemoimmunotherapy. I was in a clinical trial, though, but that was to determine the effectiveness of Anakinra in preventing serious side-effects; in my case, I only got a few mild fevers, which is the biochemical equivalent of winning the lottery, in a lottery where losers end up comatose and intubated. https://en.wikipedia.org/wiki/Anakinra https://en.wikipedia.org/wiki/Anakinra

sergiotapia 4y ago
I am very happy for your outcome, can't imagine the stress and fear you felt. So glad you had success, let's hope this becomes commonplace and people are saved from such a wretched fate.
- msla 4y ago
  I'm also very happy, especially since I was in complete remission as per a PET/CT scan a month after infusion after my cancer had survived two previous lines of chemotherapy (DA-EPOCH-R and R-GemOx) and had even shrunk but became more metabolically active after the second line. I'm still in complete remission, with further destruction of the tumor, six months after infusion, and there's some evidence the CAR T-cells can persist a decade after infusion: https://www.nature.com/articles/s41586-021-04390-6 https://www.nature.com/articles/s41586-021-04390-6
  - worthless-trash 4y ago
    This story made my day.
aledalgrande 4y ago
We need more stories like this.

dumbmrblah 4y ago

Incorrect. Yescarta, Tecartus among others are approved for certain types of lymphoma. Multiple myeloma has Carvykti and Abecma https://www.cancer.gov/sites/g/files/xnrzdm211/files/styles/cgov_article/public/cgov_image/media_image/2022-03/FDA%20Approved%20CAR%20T-Cell%20Therapies%20Table.jpg?itok=O-YYUqxS https://www.cancer.gov/sites/g/files/xnrzdm211/files/styles/... With respect to institutions: East coast: Sloan Kettering in NYC and Dana Farber in Boston Middle America: MD Anderson in Houston West coast: City of Hope and UCLA in Los Angeles.

cauthon 4y ago
Hutch/SCCA?
jcims 4y ago
Took my wife to MSK for a second opinion on the treatment plan for her ovarian cancer. They were beyond useless. They wouldn’t say or recommend anything until the current treatment plan (eg round of chemo or surgery) was complete, yet it was incredibly difficult to arrange time with them to review results when that time came. Basically we got nothing from them. Not sure what my point is other than if you’re getting a second opinion, discuss how the provider will integrate their assessment with the existing treatment plan. And at the end of the day it’s the doctors and nurses you get that make the difference in your care, not the building.
- voisin 4y ago
  I hope that this didn’t negatively impact your wife’s outcome and that she got better care elsewhere.
  - jcims 4y ago
    Thank you. We visited Cleveland Clinic as well and received very similar results. I briefly thought about starting a class for cancer patients to help them navigate the medical system in the US. I had to try to learn to fly from the front seat of the plane and it was a bad experience. She passed in 2020, just two years after diagnosis.

Enginerrrd 4y ago

How do they handle controls in cancer trials? Is it compared against what is otherwise the standard of care?

mcbain 4y ago
There's not one answer but often: yes, split into "arms" receiving SoC or trial. Details on this is part of the trial listing which is usually on https://clinicaltrials.gov/ https://clinicaltrials.gov/