I couldn't agree more

Tethys41
Tethys41 Member Posts: 1,382 Member
in Ovarian Cancer #1

http://www.fixoncology.com/









 


​You live in the United States, and you’ve been diagnosed with cancer.  Your options are severely limited.  Why?  Because you live in the United States.
 
I don’t know how many people in the US die of cancer every day because of what the government allows and does not allow, but I know there are some.  I know this because I might have been one of them. 
 
Cancer is treated here in the US with surgery, radiation and chemotherapy – what I’ll call the Big 3.  For a very few types of cancer there are some other options such as hormone drug treatments and some so-called immunotherapy treatments, but again, only if you have one of a very few particular types of cancer.  Otherwise, your options are the Big 3.  Not that the Big 3 are useless – they are powerful weapons and might help defeat your cancer.  But know that when you see your oncologist, that’s all they will recommend.  When you get a second opinion (assuming your diagnosis is correct), that’s all they will recommend.  The only significant difference you might hear is whether or not surgery is possible; otherwise you’ll hear only variations of chemo and radiation.  So don’t bother to go to cancer center after cancer center hoping to hear something better.  You won’t.
 
So what’s wrong with that?  It’s not wonderful to have cancer, and you have to do what you have to do.  We have the most advanced medicine in the world, after all.  We new patients don’t know anything about cancer, and our oncologists do.  So we listen to our oncologists, and we believe them when they say the Big 3 are our only options.  Well, that has some basis in truth, but only because those are the only options your oncologist is allowed to recommend to you.
 
And so I ask:  Why aren’t treatments that have been shown to have a positive effect and do no harm available here?  Why is one of the most widely prescribed anti-cancer drugs in Germany not allowed to even be imported into the US?  Why can’t cancer patients easily find out about all the things that might help them?  Why do treatments shown to have a positive effect take so many, many years to be available?  And why aren’t patients who are expected to die allowed to try virtually anything that might save their lives?
 
Example 1
First let me quickly define the difference between conventional cancer treatment (the Big 3) and what is called immunotherapy.  The Big 3 treatments are designed to kill cancer cells.  Chemo and radiation, unfortunately, also kill or harm non-cancerous cells.  Side effects are very difficult and some can be permanent.  Immunotherapy is the opposite:  it is designed to work with your body’s own defenses so that they can target and kill the cancer cells.  You most likely haven’t heard of immunotherapy because it is fairly new.  I can’t say it is actually new, since it’s been studied as a possible cancer treatment for some 30 years now.  But it’s very unlikely that you’ll hear about it from your oncologist.
 
On to Example 1.  Your dendritic cells act as “messengers” to your most powerful disease-fighting cells.  An injection-based treatment that more or less teaches your dendritic cells to mobilize your immune system against cancer has been approved for prostate cancer for 6 years now.  No approvals for any other kind of cancer in 6 years.  I had to go to a clinic in Mexico to get it for my endometrial cancer.
 
Example 2
Cancer cells weaken or even die in high heat.  Heating the cancer cells can be done through a process called hyperthermia – either “local” directed at the area of the cancer cells, or “whole body.”  Hyperthermia is acknowledged as a treatment that damages and kills cancer cells by the National Cancer Institute (www.cancer.gov), but your oncologist doesn’t offer it and won’t mention it.   I’ve read on the website of Cancer Treatment Centers of America that they offer local hyperthermia, but if that is true then why only them?  As for whole body hyperthermia, I was unable to find a provider in the States.  Hyperthermia has virtually no side effects and is harmless when administered properly.
 
There are extremely advanced hyperthermia machines that are reportedly being evaluated now, but after knowing that heat is a harmless and effective killer of malignant cells for over 100 years, why aren’t there widespread conventional options for hyperthermia that a cancer patient hears about or has the option to use?
 
Example 3
European white mistletoe, in its injectable form, is one of the most widely prescribed cancer treatment drugs in Germany and other German-speaking countries.  Taken properly, it is harmless, and its positive effects on cancer have been noted and studied since the 1920s.  The US government will not allow this substance to be imported into the US.  Mistletoe’s existence, widespread use and reports of good results are acknowledged by the National Cancer Institute on www.cancer.gov, but you can’t get it.
 
One does have to wonder about the profit motive of the medical industrial complex in this country.  Through my journey of research and learning, I noted the disdain that the medical establishment expresses about holistic methods of treatment, and the distrust that holistic advocates express about the establishment.  Some popular advocates of holistic care for cancer believe that the industry’s profit motive makes it actively oppose any non-"big-pharma" alternatives.  A whole-body hyperthermia machine, for example, might cost $50,000 or so, but that’s about the same as only 3 or 4 chemo treatments.  I had 18 chemo treatments, for a total of some $200,000 in charges.  Imagine 650,000 patients per year getting chemo (according to the CDC) and you can see that there might be a conflict.  Nevertheless, I truly didn’t ascribe that level of evil to the pharmaceutical companies.  But one does have to wonder about it when inexpensive and widely used treatments like hyperthermia, misteltoe, and oxygen therapies (oxygen is also harmful to cancer cells) are not permitted here.
 
Example 4
When I asked my oncologist what I could do to help myself in addition to the Big 3 – what type of diet, for example – I got only a blank stare.  Well, cancer loves sugar in all its forms, and your diet probably is laced with toxins.  Fixing this won’t cure your cancer, but not fixing it will only hurt.  Why don’t oncologists know that?  I’ve read that there is more effort now in some hospitals to incorporate some basic knowledge of the human body and things outside of the Big 3, even though I personally didn’t see it.  But cancer patients of all people need to be educated about cancer and sugar and toxins, and most oncologists don’t do it.
 
Example 5
In February, it was reported that two immunotherapy clinical trials had 94% and 80% success rates on acutely ill cancer patients.  The speculation is that this treatment might be available in a couple of years, probably only for the kinds of cancer the trials specifically targeted.   In the spirit of full disclosure, 2 of the 75 already terminal patients in the two studies died.  But who, I ask, wouldn’t take those odds if the alternative is dying anyway?  And how many people will die in the meantime because they aren’t allowed to try it and perhaps live?
 
There are other examples.  The reason you don’t hear any of this from your oncologist is because he or she is required to recommend to you the “standard of care” for your particular type of cancer.  It doesn’t matter what they actually think, or what they may know of that might possibly help you.  They can’t recommend anything but the standard of care.   And the standard of care is the Big 3 and/or, as noted above, perhaps some hormone treatments or, extremely rarely, immunotherapy treatments.  Now it is entirely possible that the standard of care may help you – in fact it helped me the first time through.  My story was endometrial cancer, stage 1B, grade 2.  Hysterectomy a month after diagnosis, no reason to expect that any cancer remained.  My oncologist recommended chemo and radiation anyway, and I did radiation about 5 months after the hysterectomy, but no chemo.  A scan then revealed some spots, so I did six months of debilitating chemo treatments.  My scans were then clear for about 18 months, so no one can argue with that success.  It did show up again, however, and the prognosis was very poor.  The only option offered was more chemo, which had no chance of destroying the tumors and only about a 25% chance of slowing their growth or perhaps shrinking them temporarily.  With those depressing prospects, I decided to investigate other options, and thus made trips to Germany and Mexico for treatment.  Because even with this virtual death sentence, I was not permitted by the government to try things that might save my life.  That is wrong.
 
And what about the many, many people hearing the same death sentence who can’t leave a job for a month or two for an overseas clinic, or can’t leave their children for a month or two, or don’t have the ability to spend months doing research as I did, or can’t afford  the out of pocket cost (which is significant)?   What about them?  Well, they mostly die.
 
I started out seeing my oncologist as an educator, and maybe I was wrong about that.  If so, then people need to know that, and need to be aware that there is more information they need than what is given to them by their oncologists.  Oncologists carry out the standard of care as it stands at any given time, period.  They don’t educate you about cancer, and they certainly can’t help you get anything beyond the standard of care.  I’d also add that over the course of this journey I saw six American oncologists, so my experience wasn’t just one bad apple.  Most of the six were very caring people.
 
The oncologists who saw me later in the game recommended that I check into clinical trials, and that’s another whole story.   Searching for clinical trials is like being a 4-year-old researching a high school term paper.  Why don’t oncologists know that, or if they do why don’t they tell you?  A search on www.clinicaltrials.gov brought up 167 trials currently recruiting for endometrial cancer.  Only one was for any form of immunotherapy as far as I could tell from the search.  Out of 167.  The rest were mostly for more and different kinds of Big 3 treatments.  Tremendous kudos for CISCRP (www.ciscrp.org), an organization I found after much research that can sift through the jargon and find real trial possibilities for you.  But don’t think that just because you find one that you’ll actually get into it; the rules are extremely stringent so the odds are low. 
 
I’m not a doctor or a politician.  So I don’t know why the government restricts the things it restricts.  I know the arguments about things not having had “proper” testing, but why not after so many, many years?  Why are clinical trials for endometrial cancer, for example, 166 to 1 in favor of the same old same old?  I’m sure money is an issue in various ways, and many will say we’re doing the best we can.  Really?  There are people dying when they might comfortably live longer if the government would just get out of the way.  Let’s follow the leads of Germany and Mexico, where there is still a standard of care but physicians are allowed to offer more.  And patients are believed to be intelligent enough to make responsible choices for themselves.
 
There is a bill in the US House of Representatives now, called the Right to Try Act of 2015. This bill, which has been in a Judiciary Committee sub-committee since July 29, 2015 - nine months as of this writing - says that the federal government cannot bar physicians from prescribing, or people from using, experimental treatments if they are terminally ill.  It's not perfect and doesn't fix all of the problems outlined here, but it's a very big step.  So please - contact your congressman and senators, too, and urge them to support HR 3012, the Right to Try Act of 2015.  
 


Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    #2
    Very thought-provoking

    Very thought-provoking article and I have to say that I pretty much concur with a lot of what was said.

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