Page 2 of 2

Re: day 1 is the 1st paradigm shift needed

Posted: Tue Apr 02, 2019 6:27 am
by Utwo
rp1954 wrote:It should be this simple:
1. give them extensive blood work ...
2. give those in satisfactory shape ...

rp1954, Have you proposed this regimen yourself?
Has it already been tested in a field trial?

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 02, 2019 7:37 am
by rp1954
rp1954, Have you proposed this regimen yourself?

It is there for all Colon Club readers, activists and adminstrators to consider.

Has it already been tested in a field trial?

My wife's treatment is based on a degree of personalization and stratification. Its somewhat more like a system of navigation and exploration on an advanced sailing vessel 250 years ago. Despite many unknowns, you can steer decisively; explore somewhat predictively, with many remaining unknowns even potentially disastrous ones, by one or a series of measurements, based on prior knowledge.

Crude trials, without much stratification, are like many passenger ships being set adrift at some point in the oceans, like little rubber duckies, to measure ocean currents, watching to see which ones come home. It's scientific, but "no thanks", not with my boat.

I do accept and use trials results, even dissect them with other skills, accumulate information, and design from them. I can run many small trials and experiments, and navigate. Formal medicine is purblind about the other "sailing" skills and inefficient in its methods. A better trial would be to see whether a skilled captain could predictively "bat 900 or a 1000" on a certain high risk route, where 7 of 8 ships never come back, and then analyze the voyage logs. None of this adrift business...

Medicine is hard of hearing, only groups like this might change or mildly challenge its premises. To varying degrees, we can create the information exchanges necessary to DIY much of it better than "standard" even without their participation.

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 02, 2019 9:16 am
by behconsult
O Stoma Mia wrote:
behconsult wrote:.. I got in. Appt with my Senator on April 16 for a 1/2 hour proposal.....after my onc appt in the morning-- Irony. B

Good! I'm happy to hear that you got an appointment. Have you decided what to focus on during your half-hour appointment? Do you have an actual proposal to present?


Thank you. I will draft a proposal statement, the actual elements to include in a "Cancer Patient Bill of Rights" and the educational requirements to be be provided to all patients by all oncologists personally. This includes current evidenced based treatment of other medical disciplines, closest availability of said services if not offered at that treating facility, a reference to CAM (Alternative treatment), right to second opinions in any discipline they seek, and also explain the right to shop around for best prices on medications. Current system is a buy and resell program in American, Onc buy the drug and resells to you. For example, many other outlets list my Avastin for 6k per dose. My insurance reimburses 25K every two weeks for it I don't think the infusion nurse is pocketing the difference. I am blessed with amazing insurance. I have an email in to someone I know who was a legislative aid on the best and most influential delivery style. My 1/2 hour has to count

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 02, 2019 9:19 am
by behconsult
rp1954 wrote:rp1954, Have you proposed this regimen yourself?

It is there for all Colon Club readers and adminstrators.

My wife's treatment is based on a degree of personalization and stratification. Its somewhat more like a system of navigation and exploration on an advanced sailing vessel 250 years ago. Despite many unknowns, you can steer decisively; explore somewhat predictively, with many remaining unknowns even potentially disastrous ones, by one or a series of measurements, based on prior knowledge.

Crude trials, without much stratification, are like many passenger ships being set adrift at some point in the oceans, like little rubber duckies, to measure ocean currents, watching to see which ones come home. It's scientific, but "no thanks", not with my boat.

I do accept and use trials results, even dissect them with other skills, accumulate information, and design from them. I can run many small trials and experiments, and navigate. Formal medicine is purblind about the other "sailing" skills and inefficient in its methods. A better trial would be to see whether a skilled captain could predictively "bat 900 or a 1000" on a certain high risk route, where 7 of 8 ships never come back, and then analyze the voyage logs. None of this adrift business...

Medicine is hard of hearing, only groups like this might change or mildly challenge its premises. To varying degrees, we can create the information exchanges necessary to DIY much of it better than "standard" even without their participation.[/quote]

I agree with you completely! Your pearls are welcomed by me and many others.

Federal law 21CFR50.25 - Elements of informed consent

Posted: Tue Apr 02, 2019 2:41 pm
by O Stoma Mia
Before your meeting with the Senator you might want to have a look at Federal law 21CFR50.25. This is the law that outlines the required elements of Informed Consent in the case of clinical-trial patients (i.e., research subjects who volunteer for clinical trials).

From this law you might be able to get some ideas on how to structure a law on "Cancer Patient Bill of Rights." For example:


    [Code of Federal Regulations] [Title 21, Volume 1] Sec. 50.25 -- Elements of informed consent
    ...
      Article 4:
      "A disclosure of appropriate alternative procedures or courses of treatment, if any, that might be advantageous to the subject. ."
    In addition, the Informed Consent Form for clinical-trial patients is designed to give detailed contact information, including telephone number, for the person(s) who are qualified to answer questions.

      Article 7:
      "An explanation of whom to contact for answers to pertinent questions about the research and research subjects' rights, and whom to contact in the event of a research-related injury to the subject."

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 16, 2019 1:07 am
by O Stoma Mia
behconsult wrote:
O Stoma Mia wrote:
behconsult wrote:.. I got in. Appt with my Senator on April 16 for a 1/2 hour proposal.....after my onc appt in the morning-- Irony. B

Good! I'm happy to hear that you got an appointment. Have you decided what to focus on during your half-hour appointment? Do you have an actual proposal to present?


Thank you. I will draft a proposal statement, the actual elements to include in a "Cancer Patient Bill of Rights" and the educational requirements to be be provided to all patients by all oncologists personally. This includes current evidenced based treatment of other medical disciplines, closest availability of said services if not offered at that treating facility, a reference to CAM (Alternative treatment), right to second opinions in any discipline they seek, and also explain the right to shop around for best prices on medications. Current system is a buy and resell program in American, Onc buy the drug and resells to you. For example, many other outlets list my Avastin for 6k per dose. My insurance reimburses 25K every two weeks for it I don't think the infusion nurse is pocketing the difference. I am blessed with amazing insurance. I have an email in to someone I know who was a legislative aid on the best and most influential delivery style. My 1/2 hour has to count

Good luck on your appointment today!

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 16, 2019 12:13 pm
by behconsult
Bless you and Thank you!! Two more hours and I hope my chemo brain doesn't make me a fool. Bob

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 16, 2019 4:59 pm
by behconsult
The Senator liked the proposal and is agreeable to sponsoring. He is sending the proposal to Legislative Services to be drafted and they will be in touch with me to craft it. I will need Ohio Buckeye Help from locals on the colon club board. He was curious who would oppose it as every piece of legislation as some opposition groups.

Re: Oncology and chemo business as a monopoly on treatment

Posted: Tue Apr 16, 2019 5:47 pm
by Lee
Good luck,

Lee

Re: Oncology and chemo business as a monopoly on treatment

Posted: Wed Apr 17, 2019 9:54 am
by O Stoma Mia
behconsult wrote:The Senator liked the proposal and is agreeable to sponsoring. He is sending the proposal to Legislative Services to be drafted and they will be in touch with me to craft it. I will need Ohio Buckeye Help from locals on the colon club board. He was curious who would oppose it as every piece of legislation as some opposition groups.

Congratulations on getting support from your Senator. You mentioned that you would need help from "locals on the colon club board." But which board? The Board of Directors, or the ColonTalk message board?

There is one member of the Board of Directors who is from Ohio, but there are other Colon Club members from Ohio who are active on the ColonTalk message board and who post blog-posts there from time to time. Who are you trying to contact?

I would suggest that you try to contact some of the Colon Club members who have been to a Call on Congress event and who have attended one of the briefings there on how to deal with the Congressional legislative process.


Also, I think it would be a good idea to familiarize yourself with the way that medical practice is regulated in the United States. In the US, most medical care issues are delegated to the individual states and to their Departments of Public Health. For example, I think licenses to practice medicine are issued ultimately by the individual states. And I suspect that a Cancer Patients Bill of Rights would need to have fifty different versions, one for each state -- but I'm not totally sure about that.


Re: Oncology and chemo business as a monopoly on treatment

Posted: Mon Sep 23, 2019 4:15 am
by Siti
behconsult wrote:This may be a little psychological venting: Twice so far I have had to battle my oncologists for alternative treatments such as cryo or SBRT consultants. Each onc was a "chemo for life" proponent. This most recent occasion I think I bludgeon my Onc to the point where he said I will support you in whatever decision making. Prior to that he gave me crap for requesting a PET stating I didn't need it, only later to learn I had it sent to the tumor board in pulmonary who found concerns.

He later explained his position that a met elsewhere is still considered colon cancer and that they treat with colon cancer drugs.

A second opinion and research confirmed- Many oncs will allow a stage 4 patient to progress through various chemo regimens until death without even considering MWA, RFA, Cryo, SBRT of some of the other treatments. My second opinion onc states that many oncs aren't interdisciplinary and have research to support there narrow views of chemo only.


Hello Behconsult — I just read this and was wondering if there was any success with the cryotherapy?