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"Learning Tool"? I presume that's your term. Ethically, a physician can't administer a drug to "see what happens" without having a clinical trial protocol approved by the Institutional Review Board of the hospital. And that requires that there be some hope of benefit for the patient. (yes, I've had IRB training over the years...)
It's true that there are no guarantees in the use of drugs, but it's not true that a doc can just randomly administer a chemotherapy drug just to "see what happens". That would be malpractice and probably an IRB violation, and the doc would be risking license suspension as a minimum.
Uncontrolled, unapproved human experimentation went out in the aftermath of WWII and other problems over the years.
A side note: traditionally, "chemotherapy" refers to relatively non-specific cytotoxic drugs - drugs that kill any fast growing cell. Lay people may use the term to refer to any cancer therapy, but medical professionals usually won't. We also have targeted therapies that aren't cytotoxic to all cells. There's a variety of terms used for these, such as hormonal treatments, antibody treatments, checkpoint inhibitors and so forth. Each group of targeted therapies works on a different subset of cancers, and has it's own set of patient management issues, in contrast to classical chemotherapy, which as a group have many common patient management issues.
Thanks for this information. Yes, "learning tool" was mine, and of course I know the oncologist would have to have the approval of the hospital.
The slowing of the growth of the cancer was the stated hoped-for benefit to the patient. That was how it was presented. They made it clear it would not be curative.
And of course I looked up the two drugs, which is how I learned that they are normally used for brain and ovarian cancers. But I did not imagine that the doctors were unsure themselves of how it would react on his lung tumor. They were honest about that. I don't think this was the first time anyone had tried this on his type of lung cancer, but I definitely got the impression they didn't have a lot of experience with it.
MQ801, remember that many drugs are used off label. And on top of that, lung neuroendocrine tumors are less common so there won't be as much guidance regarding therapeutic choices.
It's even worse for very rare cancers like I have - very little published to drive evidence based choices. Both chemotherapy drugs I'm taking are also approved for other indications, mostly brain cancers.
MQ801, remember that many drugs are used off label.
Right. Sometimes one chemical labeled primarily for use on a different condition can create a secondary effect when combined with something else. The combination has been found to create more of a benefit than either drug would on its own. Chemo regimens are often a combination of chemcal ingredients. Less likely that every malignant cell will become resistant to or survive exposure to all of them.
Last edited by Parnassia; 08-01-2022 at 03:39 PM..
Right. Sometimes one chemical labeled primarily for use on a different condition can create a secondary effect when combined with something else. The combination has been found to create more of a benefit than either drug would on its own. Chemo regimens are often a combination of chemcal ingredients. Less likely that every malignant cell will become resistant to or survive exposure to all of them.
A better way to look at this is synergistic effects.
In the early days of chemo (think '50s and 60s) the thought was like you said in the bold above. Turns out it's not quite like that. However, our tool kit is much broader than back then, with much more targeted interventions, including many that are not cytotoxics, like checkpoint inhibitors.
The big problem is that the one common characteristic that most cancers have in common is genetic instability - they're constantly mutating, which is why so few chemical agents provide cures. There are exceptions, especially for blood cancers, though.
MQ801, remember that many drugs are used off label. And on top of that, lung neuroendocrine tumors are less common so there won't be as much guidance regarding therapeutic choices.
It's even worse for very rare cancers like I have - very little published to drive evidence based choices. Both chemotherapy drugs I'm taking are also approved for other indications, mostly brain cancers.
Yes, I do understand that's what they were suggesting.
The point is moot, however, as he has declined treatment. Perhaps he would have felt differently if he didn't have the paraneoplastic syndrome, but then again, we still would have no idea he even had the cancer. They only found it because they couldn't figure out what happened to him.
A better way to look at this is synergistic effects.
In the early days of chemo (think '50s and 60s) the thought was like you said in the bold above. Turns out it's not quite like that. However, our tool kit is much broader than back then, with much more targeted interventions, including many that are not cytotoxics, like checkpoint inhibitors.
The big problem is that the one common characteristic that most cancers have in common is genetic instability - they're constantly mutating, which is why so few chemical agents provide cures. There are exceptions, especially for blood cancers, though.
Synergistic effect is a better term and the one I was struggling to come up with. Yes, the tool box today includes a lot more tools!
Thanks for this information. Yes, "learning tool" was mine, and of course I know the oncologist would have to have the approval of the hospital.
The slowing of the growth of the cancer was the stated hoped-for benefit to the patient. That was how it was presented. They made it clear it would not be curative.
And of course I looked up the two drugs, which is how I learned that they are normally used for brain and ovarian cancers. But I did not imagine that the doctors were unsure themselves of how it would react on his lung tumor. They were honest about that. I don't think this was the first time anyone had tried this on his type of lung cancer, but I definitely got the impression they didn't have a lot of experience with it.
As if your BF has nothing to lose would he be interested in trying this? The key is to find a clean supply without pesticides - the plant is everywhere. The collection time is important too to maximize the active ingredients https://www.mskcc.org/cancer-care/in...ulis-arvensis\
There was an MD in US making pills from it a few years ago; it was $600 per month of treatment then - not sure if she still does it.
Plant seems better to me - as not all complex molecules could be preserved in manufacturing
For his current symptoms to quell/moderate his immune system reaction - I would try adaptogens.
Abating or stopping the immune system attack may increase the quality of life and preserve his mental function?
Russia has it too, they extensively studied and used it in sports medicine, space medicine for decades safely.
Adaptogens must not be taken non-stop. You go through the sets of use with interruptions in between; 2 months on, 2 months off or something like that..
Search Russian sources if you could use translate apps.
Nearly all of our last 30 years of supplementation nutrition knowledge is coming from former Soviet Union studies - more than half a century ago..they were very big on it.
Another great source is Chinese Traditional Medicine and India, Iran too
I found it following the references rabbit hole
Best wishes to both of you in your journey together! Seize the day!
To Jill: go on vacation and do whatever you please, spend the money now to enjoy yourself with your husband!
Don’t think what the future holds, you will cross ”no money” bridge when you come to it!
Seize the day!
Last edited by L00k4ward; 08-08-2022 at 06:41 AM..
As if your BF has nothing to lose would he be interested in trying this? The key is to find a clean supply without pesticides - the plant is everywhere. The collection time is important too to maximize the active ingredients https://www.mskcc.org/cancer-care/in...ulis-arvensis\
Did you bother to read the parts in the description that say "However, this effect has not been tested in humans." and "No scientific evidence supports this use."? Didn't think so, but others should be forewarned that alternative and integrative medicine approaches have been studied for years with no evidence that they work.
There have been a few drugs that arose from alternative therapies like artemisinins, but they're rare and part of the standard pharmacopeia. There has been (and it's ongoing) serious efforts to find "natural" remedies for all sorts of diseases (indeed, I managed one such research effort in my working days), but few have born fruit.
As if your BF has nothing to lose would he be interested in trying this? The key is to find a clean supply without pesticides - the plant is everywhere. The collection time is important too to maximize the active ingredients https://www.mskcc.org/cancer-care/in...ulis-arvensis\
There was an MD in US making pills from it a few years ago; it was $600 per month of treatment then - not sure if she still does it.
Plant seems better to me - as not all complex molecules could be preserved in manufacturing
For his current symptoms to quell/moderate his immune system reaction - I would try adaptogens.
Abating or stopping the immune system attack may increase the quality of life and preserve his mental function?
Russia has it too, they extensively studied and used it in sports medicine, space medicine for decades safely.
Adaptogens must not be taken non-stop. You go through the sets of use with interruptions in between; 2 months on, 2 months off or something like that..
Search Russian sources if you could use translate apps.
Nearly all of our last 30 years of supplementation nutrition knowledge is coming from former Soviet Union studies - more than half a century ago..they were very big on it.
Another great source is Chinese Traditional Medicine and India, Iran too
I found it following the references rabbit hole
Best wishes to both of you in your journey together! Seize the day!
To Jill: go on vacation and do whatever you please, spend the money now to enjoy yourself with your husband!
Don’t think what the future holds, you will cross ”no money” bridge when you come to it!
Seize the day!
It is interesting, and I will look at it further, but to be honest, I am not sure he would care at this point. Nothing will reverse the paraneoplastic cerebellar degeneration. Even if the cancer was cured, the damage is done. The Purkinje cells are destroyed. He might live longer in a hospital bed as he is now, unable to feed himself, type, speak clearly, etc.
Not sure what the reference is to his mental function. That is not an issue.
I was first diagnosed with cancer in at age 50. Stage III, chemo, radiation, surgery, chemo again.
After all that, I was cancer-free for 5+ years!
In the 6th year, mets to another organ. Surgery, chemo.
Cancer-free for another 6 years!
During a non-cancer-related surgery, they found a few cancer cells, and couldn't tell if they got them all. They recommended radiation, then surgery with radiation, then chemo afterward. I said no thanks because radiation cause some other issues, and every time they do surgery to fix one thing, they cause a new problem. And, of course, they couldn't tell if I actually HAD any more cancer.
It's been 4 years since then. Still no signs of cancer. I'm kind of worried about what's going to happen 2 years from now.
But in the meantime, I'm enjoying life. I don't really expect to make it to 70, but I kind of didn't expect to make it to 60, and here I still am, 16 years after my first diagnosis. I might outlive you all.
Last edited by steiconi; 08-11-2022 at 11:04 AM..
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