4 ms·

> CAR-T therapy can have severe side effects, and recipients must first undergo intensive chemotherapy that kills off many of their existing immune cells. Damn

> CAR-T therapy can have severe side effects, and recipients must first undergo intensive chemotherapy that kills off many of their existing immune cells. Damn, that really seems like a last resort.

dylan604 3y ago
chemo is well known for the treatment being worse than the disease...in the short term. when it works, the long term effect is well worth it.
- BizarroLand 3y ago
  Yeah, I wouldn't undergo chemo for something like eczema or a simple food intolerance, but if it were something like lupus or Guillain-Barré syndrome I would seriously consider it.
- JamesBarney 3y ago
  This depends on the chemo dose. Curative chemo doses are worse in the short term. But palliative chemo usually improves quality of life.
  - msla 3y ago
    I mean, it varies. I got curative (or, what was intended to be curative) doses of chemotherapy for my cancer, and I felt a bit worse after the first round (which is often intentionally harsh so the oncologist can dial it in afterwords) but as my cancer burden shrank I began to feel better and better. Getting more use of my left lung, which had been crushed by a mass the chemotherapy shrank, definitely helped. But I didn't get nausea from my first-line chemotherapy, either, which likely means I'm some form of genetic freak anyway.
dakial1 3y ago
I understand that is similar to any chemotherapy no? But your body will rebuild it after ˜30days.
- msla 3y ago
  Chemotherapy typically isn't churn-and-burn to that extent, no. I got CAR T-cell therapy after one complete line and a partial line of chemotherapy for Primary Mediastinal B-Cell Lymphoma, a form of Diffuse Large B-Cell Lymphoma. My first line was DA-EPOCH-R, where DA means Dose-Adjusted and EPOCH-R is one letter for each of the specific drugs involved. The drugs are given in multiple 24-hour doses over five days with multiple weeks in between, in a 21- to 28-day cycle. This lasts months, for a total of eight cycles or so. I got an abbreviated second line of R-GemOx, which is three drugs, one of which is oxaliplatin which is, as a platin, substantially more toxic than other chemotherapy agents. That's given over the course of two days for a few hours each day, typically in an infusion center in the hospital as opposed to a hospital bed, with two weeks in between doses. The point is, there's plenty of time and blood tests between rounds of normal chemotherapy. The point isn't to keep you low, it's to bring you low and let you recover for a bit before cycling you through again. They even give colony-stimulating factors, such as Neupogen and Neulasta, to stimulate cell production between rounds, and they give Claritin to prevent the bone pain you might otherwise get from those drugs causing your bone marrow to swell. (The oncologist at MD Anderson was slightly horrified I was even getting R-GemOx and moved me immediately to either CAR T-cell or stem cell transplant; due to an unpromising PET/CT scan I got CAR T-cell therapy. So, no, it isn't last-ditch, but it wasn't first-line when I was sick, at least at the hospital I initially went to. However, the thinking on that might be changing. [1] [2]) Anyway, prior to the CAR T-cell infusion, I got three days of back-to-back-to-back high-dose chemotherapy specifically to destroy my immune system. It was the same drugs, not different drugs in a regimen, and by day three I was definitely feeling it worse than I ever did with DA-EPOCH-R but not as bad as my first round with oxaliplatin, which is the devil and has come to do the devil's work. The damn drug makes cold things feel like they've grown spikes, for crying out loud. How is that even possible? [1] https://ashpublications.org/blood/article/140/Supplement%201/12052/489491/CAR-T-Cell-Therapy-in-First-Line-for-High-Risk https://ashpublications.org/blood/article/140/Supplement%201... [2] https://www.mdanderson.org/newsroom/car-t-cell-therapy-effective-as-first-line-treatment-for-high-risk-large-b-cell-lymphoma.h00-159387468.html https://www.mdanderson.org/newsroom/car-t-cell-therapy-effec...
  - polishdude20 3y ago
JumpCrisscross 3y ago
> that really seems like a last resort Have we had a compelling reason to research drugs whose primary purpose is to kill bone marrow in healthy patients before?
- chefkoch 3y ago
  Sure we have, melphalan is being used to treat multiple myeloma for decades now. Kill all the cancer in your bone marrow and transplant new stem cells to regrow it.
- hinkley 3y ago
  Several forms of immune system cancer treatment involve nuking the immune system and getting a bone marrow transplant from a healthy donor. Leukemia for sure, and I think also a few kinds (or at least stages) of lymphoma.
Broken_Hippo 3y ago
I have MS. I'm in my mid-40s and have few day-to-day symptoms. I'm fairly lucky so far. But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever. The current medicines tend to reduce disease activity - which means most folks have less disability and more mobility than in previous decades - and all have some side effects, which vary in intensity. At least there are pills now: The older drugs were injected at home and tended to make folks feel even worse than modern drugs. Last resort? Not really. It might be worth the risk of chemo just to not have to have this sort of uncertainty every day. I know chemo brings its own risks, but at least there is a more clear path on what might happen.
- ikmens 3y ago
  I was recently diagnosed with MS myself and put on some of the stronger medication from what I understand (Ocrevus) to make sure my future flares will not happen or at least be a less severe. Was the vision loss from one eye really all that sudden for you? I am noticing my left seems to feel different and act slightly different when I'm tired. For now I am assuming that eventually I might also lose this eye because of the disease. Wish you all the best
  - Broken_Hippo 3y ago
    For me, it was! But honestly, it could have been weird before and I just didn't notice. I was in the shower and realized that I couldn't see my armpit to shave it. It did get better, though: I went to a specialist eye doctor when I started my medicine (gilenya) and he said it healed really well - he really couldn't tell there was ever an issue. If it makes you feel better, a lot of folks that do get optic neuritis find that the regain at least some of the vision. And realistically, once I got used to everything being blurry in one eye, it was probably something I could live with if I absolutely have to. Definitely bring it up to your neuro, though, just to let them know. If it is a new symptom for you, you might call sooner rather than later. And they were right about the meds, and I appreciate the approach. Fewer flares and less severe flares mean a better quality of life for us.
JamesBarney 3y ago
After having seen what various auto immune diseases can do to people, I would easily take a 5-10% risk of death for a cure.

> CAR-T therapy can have severe side effects, and recipients must first undergo intensive chemotherapy that kills off many of their existing immune cells. Damn, that really seems like a last resort.

dylan604 3y ago

chemo is well known for the treatment being worse than the disease...in the short term. when it works, the long term effect is well worth it.

BizarroLand 3y ago
Yeah, I wouldn't undergo chemo for something like eczema or a simple food intolerance, but if it were something like lupus or Guillain-Barré syndrome I would seriously consider it.
JamesBarney 3y ago
This depends on the chemo dose. Curative chemo doses are worse in the short term. But palliative chemo usually improves quality of life.
- msla 3y ago
  I mean, it varies. I got curative (or, what was intended to be curative) doses of chemotherapy for my cancer, and I felt a bit worse after the first round (which is often intentionally harsh so the oncologist can dial it in afterwords) but as my cancer burden shrank I began to feel better and better. Getting more use of my left lung, which had been crushed by a mass the chemotherapy shrank, definitely helped. But I didn't get nausea from my first-line chemotherapy, either, which likely means I'm some form of genetic freak anyway.

dakial1 3y ago

I understand that is similar to any chemotherapy no? But your body will rebuild it after ˜30days.

msla 3y ago
Chemotherapy typically isn't churn-and-burn to that extent, no. I got CAR T-cell therapy after one complete line and a partial line of chemotherapy for Primary Mediastinal B-Cell Lymphoma, a form of Diffuse Large B-Cell Lymphoma. My first line was DA-EPOCH-R, where DA means Dose-Adjusted and EPOCH-R is one letter for each of the specific drugs involved. The drugs are given in multiple 24-hour doses over five days with multiple weeks in between, in a 21- to 28-day cycle. This lasts months, for a total of eight cycles or so. I got an abbreviated second line of R-GemOx, which is three drugs, one of which is oxaliplatin which is, as a platin, substantially more toxic than other chemotherapy agents. That's given over the course of two days for a few hours each day, typically in an infusion center in the hospital as opposed to a hospital bed, with two weeks in between doses. The point is, there's plenty of time and blood tests between rounds of normal chemotherapy. The point isn't to keep you low, it's to bring you low and let you recover for a bit before cycling you through again. They even give colony-stimulating factors, such as Neupogen and Neulasta, to stimulate cell production between rounds, and they give Claritin to prevent the bone pain you might otherwise get from those drugs causing your bone marrow to swell. (The oncologist at MD Anderson was slightly horrified I was even getting R-GemOx and moved me immediately to either CAR T-cell or stem cell transplant; due to an unpromising PET/CT scan I got CAR T-cell therapy. So, no, it isn't last-ditch, but it wasn't first-line when I was sick, at least at the hospital I initially went to. However, the thinking on that might be changing. [1] [2]) Anyway, prior to the CAR T-cell infusion, I got three days of back-to-back-to-back high-dose chemotherapy specifically to destroy my immune system. It was the same drugs, not different drugs in a regimen, and by day three I was definitely feeling it worse than I ever did with DA-EPOCH-R but not as bad as my first round with oxaliplatin, which is the devil and has come to do the devil's work. The damn drug makes cold things feel like they've grown spikes, for crying out loud. How is that even possible? [1] https://ashpublications.org/blood/article/140/Supplement%201/12052/489491/CAR-T-Cell-Therapy-in-First-Line-for-High-Risk https://ashpublications.org/blood/article/140/Supplement%201... [2] https://www.mdanderson.org/newsroom/car-t-cell-therapy-effective-as-first-line-treatment-for-high-risk-large-b-cell-lymphoma.h00-159387468.html https://www.mdanderson.org/newsroom/car-t-cell-therapy-effec...
- polishdude20 3y ago

JumpCrisscross 3y ago

> that really seems like a last resort Have we had a compelling reason to research drugs whose primary purpose is to kill bone marrow in healthy patients before?

chefkoch 3y ago
Sure we have, melphalan is being used to treat multiple myeloma for decades now. Kill all the cancer in your bone marrow and transplant new stem cells to regrow it.
hinkley 3y ago
Several forms of immune system cancer treatment involve nuking the immune system and getting a bone marrow transplant from a healthy donor. Leukemia for sure, and I think also a few kinds (or at least stages) of lymphoma.

Broken_Hippo 3y ago

I have MS. I'm in my mid-40s and have few day-to-day symptoms. I'm fairly lucky so far. But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever. The current medicines tend to reduce disease activity - which means most folks have less disability and more mobility than in previous decades - and all have some side effects, which vary in intensity. At least there are pills now: The older drugs were injected at home and tended to make folks feel even worse than modern drugs. Last resort? Not really. It might be worth the risk of chemo just to not have to have this sort of uncertainty every day. I know chemo brings its own risks, but at least there is a more clear path on what might happen.

ikmens 3y ago
I was recently diagnosed with MS myself and put on some of the stronger medication from what I understand (Ocrevus) to make sure my future flares will not happen or at least be a less severe. Was the vision loss from one eye really all that sudden for you? I am noticing my left seems to feel different and act slightly different when I'm tired. For now I am assuming that eventually I might also lose this eye because of the disease. Wish you all the best
- Broken_Hippo 3y ago
  For me, it was! But honestly, it could have been weird before and I just didn't notice. I was in the shower and realized that I couldn't see my armpit to shave it. It did get better, though: I went to a specialist eye doctor when I started my medicine (gilenya) and he said it healed really well - he really couldn't tell there was ever an issue. If it makes you feel better, a lot of folks that do get optic neuritis find that the regain at least some of the vision. And realistically, once I got used to everything being blurry in one eye, it was probably something I could live with if I absolutely have to. Definitely bring it up to your neuro, though, just to let them know. If it is a new symptom for you, you might call sooner rather than later. And they were right about the meds, and I appreciate the approach. Fewer flares and less severe flares mean a better quality of life for us.

JamesBarney 3y ago

After having seen what various auto immune diseases can do to people, I would easily take a 5-10% risk of death for a cure.