4 ms·

Just an fyi - while car-t is very promising in many ways, it has not been effective against solid tumors. Last time I looked into this (while my father was sti

Just an fyi - while car-t is very promising in many ways, it has not been effective against solid tumors. Last time I looked into this (while my father was still alive and battling cancer, 2020), attempts to get car-t to be more effective against solid tumors have failed pretty consistently. This is why you only see car-t mentioned with leukemias, lymphomas, etc. Side note: If you're reading this because you're desperately looking for cancer treatment for a loved one, keep looking! I can share my personal anecdote if folks are interested, but the tldr is that my own searching ended up being fruitful and resulting in treatment that extended my father's life (pain and side effect free!). And without my insistence, the doctors treating him would have simply followed the conventional treatment (the dreaded FOLFIRINOX).

aantix 5y ago
Would love to hear your story and the specifics of his alternate treatment. Thank-you for sharing your story.
- elromulous 5y ago
  This is a much abbreviated version of the story. My father was diagnosed with Ampulla of vater carcinoma. It's a pretty rare cancer, most similar to pancreatic cancer. After the curative options had been exhausted (read: cancer returned after surgery), the oncologist started a regimen of abraxane and one other chemo agent (I'm blanking on the name right now). These of course come with their share of side effects, as they are "classic" chemo. Not to mention their efficacy is pretty terrible. But really at this point we needed more data. They had never sequenced the tumor. Many, many emails and calls later, the doctor finally agreed to order the sequencing. Till this day I don't know why there was so much resistance to this (also keep in mind, this wasn't some rural hospital, this was at Johns Hopkins). Some time goes by and we finally get the results. The results showed a brca mutation. This was of course excellent news, as the brca mutations are very widely studied due to their connection with breast cancer. After some research, it turned out parp inhibitors were the latest most effective treatment at the time, specifically Lynparza. Again, many emails and calls, until the oncologist agreed to prescribe it. And unlike the conventional chemo agents, this was taken orally and had few if any side effects. Months go by and the ct results come in - the tumors are shrinking! All in all my father remained in remission under the parp inhibitors for a little over a year, side effect and pain free (I can't stress that last part enough). Lynparza eventually stopped being effective (this is believed to occur due to the cancer mutating). We subsequently tried a clinical trial but in the end the battle was lost, and my father passed. While the parp inhibitor wasn't a cure, my father, my family, and I, would not give up that extra year for the world. So the tldr is: don't just listen to the oncologist, get a second opinion, don't be afraid to read hundreds of medical papers, and definitely badger the oncologist if you have salient information. Edit: typos
  - choeger 5y ago
    Your father had all the reason to be proud of you.
    - elromulous 5y ago
      Thank you.
  - elromulous 5y ago
    Just to add one note, really the biggest issue I have with the oncologist's actions is that they seemed to mindlessly follow a playbook. If x fails, apply y. With very little information gathering, and very little researching on newest therapies. And being a terribly rare cancer, it's likely this was the first time in their career they were even encountering it. But they just went with "approximate to cancer I know, now follow outdated pancreatic cancer playbook".
    - glial 5y ago
      I'm not a medical doctor, but I wonder if this can be explained as liability-avoiding behavior. If a doctor follows a "best practice", it's more defensible in court than trying something new or uncommon.
      - faeyanpiraat 5y ago
        Also the sheer volume of patients does not give you any room for getting bogged down on researching the best treatment for one patient.
  - fallingknife 5y ago
    Par for the course with doctors. I really don't understand why they are always so against doing any kind of investigation.
  - panabee 5y ago
    although too late to help your father, anyone facing acquired resistance to PARP inhibitors should look into novobiocin [0]. novobiocin is an antibiotic developed decades ago but recently "rediscovered" as offering anti-carcinogenic against some cancers which resist PARP inhibitors. in short, it targets an enzyme (polymerase theta) critical to these cancers. thanks for sharing this story. i'm so sorry for your loss, but it is amazing how such persistence and critical thinking offered your father and family another treasured year of life. he must have been unbelievably proud. [0] https://www.dana-farber.org/newsroom/news-releases/2021/antibiotic-novobiocin-found-to-kill-tumor-cells-with-dna-repair-glitch/ https://www.dana-farber.org/newsroom/news-releases/2021/anti...
bobduke 5y ago
If you are willing to share the details, please do!
voiprodrigo 5y ago
Definitely interested. Thanks for sharing.
WalterBright 5y ago
For solid tumors, what comes to mind is injecting the chemo drugs directly into the center of the tumor. Stronger chemo drugs could be used, that would be degraded before they "broke out" of the solid tumor.
PeterisP 5y ago
As a absolute non-expert, the cancer deaths I have heard about seem to often include surgically removing the solid tumor but perishing due to metastasis - so in that regard, wouldn't a combination of surgery followed up by car-t be a reasonably reliable way of ensuring that the cancer gets actually eliminated?

aantix 5y ago

Would love to hear your story and the specifics of his alternate treatment. Thank-you for sharing your story.

elromulous 5y ago
This is a much abbreviated version of the story. My father was diagnosed with Ampulla of vater carcinoma. It's a pretty rare cancer, most similar to pancreatic cancer. After the curative options had been exhausted (read: cancer returned after surgery), the oncologist started a regimen of abraxane and one other chemo agent (I'm blanking on the name right now). These of course come with their share of side effects, as they are "classic" chemo. Not to mention their efficacy is pretty terrible. But really at this point we needed more data. They had never sequenced the tumor. Many, many emails and calls later, the doctor finally agreed to order the sequencing. Till this day I don't know why there was so much resistance to this (also keep in mind, this wasn't some rural hospital, this was at Johns Hopkins). Some time goes by and we finally get the results. The results showed a brca mutation. This was of course excellent news, as the brca mutations are very widely studied due to their connection with breast cancer. After some research, it turned out parp inhibitors were the latest most effective treatment at the time, specifically Lynparza. Again, many emails and calls, until the oncologist agreed to prescribe it. And unlike the conventional chemo agents, this was taken orally and had few if any side effects. Months go by and the ct results come in - the tumors are shrinking! All in all my father remained in remission under the parp inhibitors for a little over a year, side effect and pain free (I can't stress that last part enough). Lynparza eventually stopped being effective (this is believed to occur due to the cancer mutating). We subsequently tried a clinical trial but in the end the battle was lost, and my father passed. While the parp inhibitor wasn't a cure, my father, my family, and I, would not give up that extra year for the world. So the tldr is: don't just listen to the oncologist, get a second opinion, don't be afraid to read hundreds of medical papers, and definitely badger the oncologist if you have salient information. Edit: typos
- choeger 5y ago
  Your father had all the reason to be proud of you.
  - elromulous 5y ago
    Thank you.
- elromulous 5y ago
  Just to add one note, really the biggest issue I have with the oncologist's actions is that they seemed to mindlessly follow a playbook. If x fails, apply y. With very little information gathering, and very little researching on newest therapies. And being a terribly rare cancer, it's likely this was the first time in their career they were even encountering it. But they just went with "approximate to cancer I know, now follow outdated pancreatic cancer playbook".
  - glial 5y ago
    I'm not a medical doctor, but I wonder if this can be explained as liability-avoiding behavior. If a doctor follows a "best practice", it's more defensible in court than trying something new or uncommon.
    - faeyanpiraat 5y ago
      Also the sheer volume of patients does not give you any room for getting bogged down on researching the best treatment for one patient.
- fallingknife 5y ago
  Par for the course with doctors. I really don't understand why they are always so against doing any kind of investigation.
- panabee 5y ago
  although too late to help your father, anyone facing acquired resistance to PARP inhibitors should look into novobiocin [0]. novobiocin is an antibiotic developed decades ago but recently "rediscovered" as offering anti-carcinogenic against some cancers which resist PARP inhibitors. in short, it targets an enzyme (polymerase theta) critical to these cancers. thanks for sharing this story. i'm so sorry for your loss, but it is amazing how such persistence and critical thinking offered your father and family another treasured year of life. he must have been unbelievably proud. [0] https://www.dana-farber.org/newsroom/news-releases/2021/antibiotic-novobiocin-found-to-kill-tumor-cells-with-dna-repair-glitch/ https://www.dana-farber.org/newsroom/news-releases/2021/anti...

bobduke 5y ago

If you are willing to share the details, please do!

voiprodrigo 5y ago

Definitely interested. Thanks for sharing.

WalterBright 5y ago

For solid tumors, what comes to mind is injecting the chemo drugs directly into the center of the tumor. Stronger chemo drugs could be used, that would be degraded before they "broke out" of the solid tumor.

PeterisP 5y ago

As a absolute non-expert, the cancer deaths I have heard about seem to often include surgically removing the solid tumor but perishing due to metastasis - so in that regard, wouldn't a combination of surgery followed up by car-t be a reasonably reliable way of ensuring that the cancer gets actually eliminated?