4 ms·
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
by 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 agoYour father had all the reason to be proud of you.
- elromulous 5y agoThank you.
- elromulous 5y agoJust 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 agoI'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 agoAlso 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 agoPar for the course with doctors. I really don't understand why they are always so against doing any kind of investigation.
- panabee 5y agoalthough 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...
- elromulous 5y agoThank you.
- panabee 5y ago*as offering anti-carcinogenic properties
- aantix 5y agoI’m curious, with your fathers situation, is a full sequence from a check swab from a company like Nebula.org helpful? Or is it the cancerous tissue itself that has to be sequenced? Thank you for sharing your story. It was beautiful.
- elromulous 5y agoThank you for the kind words. It's really the cancerous tissue that has to be sampled. Part of what makes cancer so hard to fight is its ability to mutate quickly. Someone with enough means would likely have a tumor sampled multiple times (for instance, sample again after the treatment stops working).