Oncology and chemo business as a monopoly on treatment

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Utwo
Posts: 260
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: day 1 is the 1st paradigm shift needed

Postby Utwo » Tue Apr 02, 2019 6:27 am

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?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Oncology and chemo business as a monopoly on treatment

Postby rp1954 » Tue Apr 02, 2019 7:37 am

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.
Last edited by rp1954 on Tue Apr 02, 2019 9:34 am, edited 3 times in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Tue Apr 02, 2019 9:16 am

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
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Tue Apr 02, 2019 9:19 am

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.
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

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O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Federal law 21CFR50.25 - Elements of informed consent

Postby O Stoma Mia » Tue Apr 02, 2019 2:41 pm

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."

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Oncology and chemo business as a monopoly on treatment

Postby O Stoma Mia » Tue Apr 16, 2019 1:07 am

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!

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Tue Apr 16, 2019 12:13 pm

Bless you and Thank you!! Two more hours and I hope my chemo brain doesn't make me a fool. Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

behconsult
Posts: 245
Joined: Fri Jul 04, 2014 4:53 pm

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Tue Apr 16, 2019 4:59 pm

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.
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

Lee
Posts: 5974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Oncology and chemo business as a monopoly on treatment

Postby Lee » Tue Apr 16, 2019 5:47 pm

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Oncology and chemo business as a monopoly on treatment

Postby O Stoma Mia » Wed Apr 17, 2019 9:54 am

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.


Siti
Posts: 100
Joined: Thu Aug 01, 2019 10:58 am

Re: Oncology and chemo business as a monopoly on treatment

Postby Siti » Mon Sep 23, 2019 4:15 am

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?
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!


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