5 ms·

Not sure about your analysis. I think you are just caught in the gap between personal preference and the goals of the healthcare system. You of course see your

by Gatsky 7y ago

Not sure about your analysis. I think you are just caught in the gap between personal preference and the goals of the healthcare system. You of course see your preferences as paramount, just as does another person who wants hyperthermic therapy, or another who wants hyperbaric therapy, or another who wants medical support for a 21 day water fast, or their psychiatrist to supervise a psychedelic session etc etc. It isn’t possible for a healthcare system to accommodate all these requests, or to engage with other non-mainstream practitioners who administer these therapies. I make no judgement on the validity of your request. From my point of view, people have been banging on about IV vitamin C therapy in cancer for years but never actually done a properly powered double blind randomised placebo controlled trial to show that it works. We can complain about lack of funding, obstructive medical systems etc, but if some people really think IV vitamin C is the best thing since sliced bread then they would find a way to get the trial done.

ksaun 7y ago
When the expected outcome from receiving standard of care treatment is the death of you or a loved one (which is sometimes the case with cancer), then you may have a higher tolerance for risk than the healthcare system.
- asdff 7y ago
  It goes the other way too. Steve Jobs would still be alive if he didn't eschew his doctor's advice and dip into alternative medicine that he truly believed was the correct solution, and he is not a dumb man.
  - jcims 7y ago
    Who cares, it was his option to pursue. Everyone's free to not take treatment regardless of the potential benefit. Hell you can go to the store and buy cigarettes. However, if you wish to avail yourself of a treatment that isn't standard of care, you're going to have a bad time unless you can find a clinical trial and magically pass both the inclusion and exclusion criteria.
  - ksaun 7y ago
    From what I've read (including [1]), it is unknown whether Steve Jobs's decision affected the ultimate outcome or even its timing. (I.e., I object to the claim that we know that he would still be alive if he'd agreed to the surgery sooner. It seems that it's possible, but that we can't know definitively.) [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4924574/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4924574/
jcims 7y ago
The points you raise about resources required to support administration of these therapies is a good one and I do agree with it. It's why my wife ultimately did not get IVC, I found an alternative care doc to administer it but didn't trust his ability to actually do it safely. There's generally a resource shortage all around, maybe especially with the oncology docs themselves. I think we had 20-24 hours in front of her doc through her two year treatment, 8 in surgery and the rest peppered through infusion visits and inpatient. I'm pretty confident IVC will end up at least as part of palliative care. Nobody is going to fund trials for it for adjunct cancer therapy because onc docs want to see trials for their specific cancer and given it's not even a candidate for monotherapy it's just not going to get the investment.

by Gatsky 7y ago

ksaun 7y ago

When the expected outcome from receiving standard of care treatment is the death of you or a loved one (which is sometimes the case with cancer), then you may have a higher tolerance for risk than the healthcare system.

asdff 7y ago
It goes the other way too. Steve Jobs would still be alive if he didn't eschew his doctor's advice and dip into alternative medicine that he truly believed was the correct solution, and he is not a dumb man.
- jcims 7y ago
  Who cares, it was his option to pursue. Everyone's free to not take treatment regardless of the potential benefit. Hell you can go to the store and buy cigarettes. However, if you wish to avail yourself of a treatment that isn't standard of care, you're going to have a bad time unless you can find a clinical trial and magically pass both the inclusion and exclusion criteria.
- ksaun 7y ago
  From what I've read (including [1]), it is unknown whether Steve Jobs's decision affected the ultimate outcome or even its timing. (I.e., I object to the claim that we know that he would still be alive if he'd agreed to the surgery sooner. It seems that it's possible, but that we can't know definitively.) [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4924574/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4924574/

jcims 7y ago

The points you raise about resources required to support administration of these therapies is a good one and I do agree with it. It's why my wife ultimately did not get IVC, I found an alternative care doc to administer it but didn't trust his ability to actually do it safely. There's generally a resource shortage all around, maybe especially with the oncology docs themselves. I think we had 20-24 hours in front of her doc through her two year treatment, 8 in surgery and the rest peppered through infusion visits and inpatient. I'm pretty confident IVC will end up at least as part of palliative care. Nobody is going to fund trials for it for adjunct cancer therapy because onc docs want to see trials for their specific cancer and given it's not even a candidate for monotherapy it's just not going to get the investment.