Oncology and chemo business as a monopoly on treatment

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

Oncology and chemo business as a monopoly on treatment

Postby behconsult » Sat Mar 30, 2019 9:00 pm

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.

I reviewed NCCN guidelines for treatment of colon cancer only to discover the board who makes the decisions on best practices for colon patients are themselves are ALL oncologists, many list the drug companies that support them, and excludes the other cancer treating disciplines. The guideline ONLY recommend chemo! In other words, oncology as the gatekeeper of treatment recommends for the treatment of cancer only their elixirs and potions, and excludes the competition like Interventional radiologists or regular radiologists from their board. Typically this is an Antitrust issue as competition is squelched.

I go to the James which is a nationally recognized cancer institute and they have extensive treatments in other departments. It makes me nauseous to think of patients who could have benefit from a whack-a-mole approach that may be much more effective than the chemo, with a higher cumulative quality of life and just might be alive today, but passed away because of narcissistic or rigid oncologists chemo only approach. Stage 4 patients deserve a Bill of Rights where information on the various treatments, with efficacy details, are provided to them regardless if there facility can or is able to provide the service. As it is now, most patients are getting a very limited informed consent that protects the providers but not the patients. I did call my Senator and left a message and I will get the interdisciplinary treatment I want and deserve. It is just everyone else I am concerned who is not able to advocate or views their onc through rose colored glasses when it really is a case of myopia.

Can I here an Amen?
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

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Oncology and chemo business as a monopoly on treatment

Postby Pyro » Sat Mar 30, 2019 10:26 pm

Preach!
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: Oncology and chemo business as a monopoly on treatment

Postby rp1954 » Sat Mar 30, 2019 11:14 pm

behconsult wrote:...Twice so far I have had to battle my oncologists for alternative treatments such as cryo or SBRT consultants

Always check the experts with the relevant expertise, get several different opinions. Particular surgeons for a particular surgery, radiation folks for radiation, etc. Oncologists aren't broad experts in chemo for brands they don't sell, perhaps even those they do. Remember that their stats are likely narrow and dated. The oncologists had no inkling about a lot of things.

Not one component of my wife's immunochemo was offered to us by an oncologist in the first 8 years. Finally at the end of her chemo, the last UFT batch, we found some oncologists that could even prescribe UFT with experience. Even though enthusiastic proponents, they were limited and dated in their thinking.

UFT type generics are not available in the US, mostly from some Asian countries, a few EU, South Am and African places. UFT and its clones have no advertising and support to speak of.

My second opinion onc states that many oncs aren't interdisciplinary and have research to support there narrow views of chemo only.

Professionals are often overstretched in interdisciplinary situations. It isn't just the doctors.

NCCN guidelines for treatment of colon cancer only to discover the board who makes the decisions on best practices for colon patients are themselves are ALL oncologists, many list the drug companies that support them, and excludes the other cancer treating disciplines.

We have to be our on advocates. If you can do your own homework or research, work with other serious patients, have time, garner some personal level medical support, some unconstrained money to dole out, that helps, too.

I go to...a nationally recognized cancer institute and they have extensive treatments in other departments. It makes me nauseous to think of patients who could have benefit [another] approach that may be much more effective... with a higher cumulative quality of life and just might be alive today,
...but passed away because of narcissistic or rigid oncologists chemo only approach.

It's kind of like Logan's Run. You have to be your own advocate, with a strong pair of feet.

Stage 4 patients deserve a Bill of Rights where information on the various treatments, with efficacy details, are provided to them regardless if there facility can or is able to provide the service.

They already claim this, but with a sanctimonious claim about evidence. It won't happen the way you demand.
Targeted cimetidine? IV vitamin C ? Celecoxib ? PSK ? UFT ? Menatetrenone? Beta glucans? Stilbesterols? Vitamin D3 ? Multimodal treatment plans.
I dare you to even ask, most of them are in medical journals.

The guideline ONLY recommend chemo! In other words, oncology as the gatekeeper of treatment recommends for the treatment of cancer only their elixirs and potions, and excludes the competition like Interventional radiologists or regular radiologists from their board. Typically this is an Antitrust issue as competition is squelched. ... As it is now, most patients are getting a very limited informed consent that protects the providers but not the patients.... It is just everyone else I am concerned who is not able to advocate or views their onc through rose colored glasses when it really is a case of...
various self interests
The big problem is competition through genuine medical freedoms to decide how to spend some (your) money...it gets political fast.
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

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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Oncology and chemo business as a monopoly on treatment

Postby O Stoma Mia » Sun Mar 31, 2019 2:35 pm

behconsult wrote:...Can I hear an Amen?

Yes, I agree with you. What I would like to ask is this: Realistically, what can be done about the current situation? How can we shift to a different paradigm that will give more rights to cancer patients? Any idea?

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Oncology and chemo business as a monopoly on treatment

Postby betsydoglover » Sun Mar 31, 2019 4:21 pm

You have a point. You should not tar all oncologists with the same brush. Many are open to all kinds of treatments as they view their main job as curing the patient. All of us Stage 4 patients are different, but oncs are very different also.

Just sayin'
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

day 1 is the 1st paradigm shift needed

Postby rp1954 » Sun Mar 31, 2019 6:19 pm

O Stoma Mia wrote:
behconsult wrote:...Can I hear an Amen?

Yes, I agree with you. What I would like to ask is this: Realistically, what can be done about the current situation? How can we shift to a different paradigm that will give more rights to cancer patients? Any idea?

Most of it starts on the first day, usually with the gastroenterologists (scoped CRC diagnosis). Loss of adequate information gathering, no initial neoadjuvant sequence preparatory to surgery, misdirections and confusions for patients who could be easily saved now and during the first year.

1. Basically a lot of identifiable stage 2 and 3 patients lose the cimetidine etc opportunities, and this probably relates to the majority of stage 2 and 3 recurs due to unnecessary mets and stem cells spread with growth spurts of early sequence seedlings.
2. A lot of stage 4 patients are denied surgery. A better understanding of inoperable reversed by neoadjuvant treatments, most them mild, would literally make them operable, and recognize them as operable. This includes cimetidine etc, lots of etc, in early stage 4, perhaps a lot of advanced stage 4s too.
3. Better bloodwork would help early stage 4 who are missed, or should be classed as potential clinical Mx, to be followed.
4. A lot of problems could be short circuited by better treatments on, or following, the first day by better problem identification and remediation. Gross vitamin D deficiency is just a small tip of the iceberg.

It should be this simple:
1. give them extensive blood work, CBC + 35-40 panels + Fdn1, drawn at diagnosis.
2. give those in satisfactory shape (no contraindictations), 2-3 days of pills before walking out, or a menu for shopping.
3. Give them LEF type literature, but a bigger booklet with other technical options.
4. Receive and assess the initial bloodwork, CBC + 35-40 chemistries and markers, make initial biochemical classifications, neoadujuvant recs, and surgical recommendations. Give out several one week packs of pills for until surgery. No advanced blood work has been received back yet.
5. Later, after surgery, add CA199 and CSLEX1 to the required path stains.

These simple steps could save a lot of grief, money and lives. Also it would broaden their technical options greatly.
"etc." leaves open important chemical choices for the moment and paradigm issues

Colon Club could do this with 100-200 patients with a few cooperating GI drs to demonstrate this, for $1000 each, except Foundation 1 type stuff.
Most of these were cheaply doable 10-15 years ago but are financial orphans in the medical complex.
If we could pool the bloodwork and have some participate in crowd sourcing, you would have additional potential to crack serious issues faster.
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 » Sun Mar 31, 2019 8:27 pm

betsydoglover wrote:You have a point. You should not tar all oncologists with the same brush. Many are open to all kinds of treatments as they view their main job as curing the patient. All of us Stage 4 patients are different, but oncs are very different also.

Just sayin'


Hi Betsy, You are correct. I hope you didn't see in my writing me that I "tar ALL oncologists"; I don't. Your wonderful statement does lead me to another line of thought; just how many are interdisciplinary, and how many are not? I think the majority are not interdisciplinary in their approach. That would make a great research study.

What grabbed me personally, the one onc I had (second one) that was "chemo for life", and I believe was looking forward to me be joining the stage 4 treatment failure clinical trial she was also running, is currently on the colon cancer NCCN board. She did not lift a finger in my exploratory pursuit of alternative treatment.

My very first onc who is now at the mayo was totally into an interdisciplinary and also was on the NCCN board. The onc I have now acknowledged that his lens is strictly following the chemo protocols only and he shared that he is trained to see a met as colon cancer only treatment by colon cancer drugs.

I look at the research being done today which is very important. Most phase two and phase three drug studies fail to measure the perceived subjective quality of life of patients. They measures variables to look at the various biomarkers, efficacy, etc. but each patient will have their own unique quality of life curve. For example, an 80-year old that cuts his lawn, goes to church, and watches tv with his spouse may find a new drug that extends his life 6 moths a miracle so he can continue the same. A mom that is in their early 50s may find that is drug that extends their life 6 months worthless when the side-effects lead her to 6 more months of hell. The point being the oncs and drug companies are the beneficiaries first. They forget to assess the patient's perceived existential quality of life across the treatment. This is common in the US and less so in other countries. In fact in the US we don't have a psychometric instrument to measure patient's perceived existential quality of life

I have thought about people on this board. Do you know that we all for the most part, unique homogeneous colon cancer patients---- I think majority of patients just don't visit this page, and look at their doc with rose colored glasses.

I also work with cancer patients in my profession (20-30 cases a year). I see it frequently in other types of cancer patients as well. 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 » Sun Mar 31, 2019 8:44 pm

I think every colon cancer treating facility should have a ColonClub liaison.

If my senator or state rep calls me back, I will share an earful. I think all the change can occur from a bottom-up initiated force. Requiring a detailed pro-patient informed consent and required disclosure about treatment options. Hell in Ohio, if you need a particular treatment that is offered at a competing hospital 5 miles away, you will not be informed or referred there in many cases. They will say, "sorry there is nothing else that can be done."
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

User avatar
O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Oncology and chemo business as a monopoly on treatment

Postby O Stoma Mia » Mon Apr 01, 2019 2:17 am

behconsult wrote:... If my senator or state rep calls me back, I will share an earful. I think all the change can occur from a bottom-up initiated force. Requiring a detailed pro-patient informed consent and required disclosure about treatment options.

Good luck on your contact with your Senator. If you don't get a reply, you might try contacting one of the people who visited his office during the Call-on-Congress event last month. There were seven of them, including the Colon Club manager for the Kimberly Fund.

https://farm1.staticflickr.com/870/41348597881_0430f6792a_b.jpg
https://farm1.staticflickr.com/880/39539856780_efbf1a26d5_b.jpg
Photo credits: FightCRC.org

One thing your Senator or congressman could do is to sponsor a comprehensive bill on Informed Consent. (More on that later.)

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Oncology and chemo business as a monopoly on treatment

Postby Pyro » Mon Apr 01, 2019 7:02 am

I support this BUT there are some issues. You would have to constantly change the “Bill of Rights” if it includes the effectiveness of treatments because it’s always changing. I’m not saying it’s impossible, but it may not include this.i was talking to a cancer researcher the other day (neighbor, I’ll find out where, a lot of people here might be interested) and he was telling me cancer was a moving target due to its mutations, which tells me treatment will always be different between individuals.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Mon Apr 01, 2019 9:21 am

Pyro wrote:I support this BUT there are some issues. You would have to constantly change the “Bill of Rights” if it includes the effectiveness of treatments because it’s always changing. I’m not saying it’s impossible, but it may not include this.i was talking to a cancer researcher the other day (neighbor, I’ll find out where, a lot of people here might be interested) and he was telling me cancer was a moving target due to its mutations, which tells me treatment will always be different between individuals.


Thank you. I am interested in what details you obtain. I agree. The landscape is changing and in a better way. In radiology or Interventional radiology, most of the research consider a met a met with a smaller focus on genetics. This is also the case in with liver mets. Shouldn't every liver met patient know of Dr. K's work with the HAI pump. :)
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

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Oncology and chemo business as a monopoly on treatment

Postby Pyro » Mon Apr 01, 2019 11:40 am

My neighbor is a scientist at Ventana Medical Systems, a subsidiary of Roche. Hope I can get a look on the inside!
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

Re: Oncology and chemo business as a monopoly on treatment

Postby behconsult » Mon Apr 01, 2019 4:52 pm

O Stoma Mia wrote:
behconsult wrote:... If my senator or state rep calls me back, I will share an earful. I think all the change can occur from a bottom-up initiated force. Requiring a detailed pro-patient informed consent and required disclosure about treatment options.

Good luck on your contact with your Senator. If you don't get a reply, you might try contacting one of the people who visited his office during the Call-on-Congress event last month. There were seven of them, including the Colon Club manager for the Kimberly Fund.

https://farm1.staticflickr.com/870/41348597881_0430f6792a_b.jpg
https://farm1.staticflickr.com/880/39539856780_efbf1a26d5_b.jpg
Photo credits: FightCRC.org

One thing your Senator or congressman could do is to sponsor a comprehensive bill on Informed Consent. (More on that later.)


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
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

User avatar
Maggie Nell
Posts: 1142
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Oncology and chemo business as a monopoly on treatment

Postby Maggie Nell » Mon Apr 01, 2019 7:43 pm

Swing away!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r.j hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Sorbitol is the Devil
Ordained Dudeist Priest at Dudeism, the Church of the Latter-Day Dude 8)

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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Oncology and chemo business as a monopoly on treatment

Postby O Stoma Mia » Mon Apr 01, 2019 11:28 pm

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?


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