Doctors opinion of Standard of Care

Portal Forums Cancer Basics Oncology Economics/Industry/Policy Doctors opinion of Standard of Care

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February 4, 2017 at 4:21 pm  #1289990    

roamer321

I would like a doctors opinion of cancer Standard of Care.

The way I understand it is that it is a collection of the current science and studies that an oncologist uses to plug the patients symptoms into and they get a treatment plan on how to go forward. This science has to be up to the standards of the oncologist and nothing less.

I also know about the two guidelines. The ASCO and the NCCN where oncologists get their information.

My issue with this is that there are newer cancer cures in the pipeline that have the potential to cure
and do no harm in the process. But from what I understand the oncologist cannot suggest or even speak with the patient about this even when the Standard of Care is failing. I believe they would get in trouble with their hospital, the insurance provider, the lawyers, the doctor licensing boards and so on.

I am a Christian and so is my wife’s oncologist and I believe our priorities should be God Family Work in that order. So you see the conflict in the priorities of me and the doctor are different. He has his means of making a living before the very best interests of my wife. While I have my wife’s interest higher in my list.

I have been studying lung cancer almost nonstop for the last year since my wife’s diagnosis. I believe that I probably have a more well round view of treatment options than the oncologist or at least I can consider them where he is constrained from doing so.

So I would like to hear from a doctor if you share this view or if not why.

February 5, 2017 at 6:49 am  #1289992    
JimC Forum Moderator
JimC Forum Moderator

Hi roamer321,

Welcome to GRACE. I am sorry to hear of your wife’s diagnosis. I understand completely your desire to find the best treatments for your wife; that search led me to become a GRACE moderator.

The guidelines are simply that – listings of treatment regimens that have the best scientific evidence of efficacy for a particular cancer, staging and histology. They are not rules by which oncologists are bound, and there is room for the doctor to use his best judgment. There are certain limitations: the drugs use must be approved for use, at least in some context. And because it is usually such an important issue for most patients, whether insurance will cover the chosen therapy is important. In practice, most patients want the “best” therapy, and an oncologist responds with the treatment that has the best evidence of probable success.

It is true that there are therapies “in the pipeline” (although each has its own set of side effects), but they have that status because there remains insufficient evidence of their efficacy and/or safety. Many oncologists will recommend a clinical trial when appropriate, even when there is a more established therapy available. It is up to the patient to decide, with the guidance of the oncologist, whether to try a less-proven treatment. Unfortunately, many new therapies (which are often touted as a “cure” in the media) never live up to their promise and never get approved. If your wife’s oncologist is not open to the possibility of a clinical trial, perhaps a second opinion is in order.

Good luck with your wife’s continued treatment.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 5, 2017 at 10:46 am  #1290000    

roamer321

Thanks @jimc for your reply.
I have a couple issues with your reply.

“There are certain limitations: the drugs use must be approved for use, at least in some context. And because it is usually such an important issue for most patients, whether insurance will cover the chosen therapy is important”

You use the word “drugs”. The treatments I have found do not involve drugs. The pharmaceutical companies are part of the problem but that is a topic for another discussion. I cannot believe that someone would let money get in the way of cancer treatment. That is for more minor things that you should consider the insurance coverage and not life or death situations.

“It is true that there are therapies “in the pipeline” (although each has its own set of side effects), but they have that status because there remains insufficient evidence of their efficacy and/or efficacy.”

This is not totally true. One treatment that we are now using is a Ketogenic diet. The side effects of it are lowering insulin, lower blood sugar, lost fat mass, reverse type 2 diabetes, control epilepsy, better mental focus, and the potential to prevent and put cancer into remission.
The diet approach “remains in the pipeline” because there is no money for the kind of research needed to satisfy the guideline folks or oncologist and pharmaceutical companies will never funds this research because there is no profit motive for them and I understand that.

There are also other treatments like canabinoids that have a whole other set of problems that will prevent further research. But nether of the therapies certainly not because of their lack of efficacy.

” Unfortunately, many new therapies (which are often touted as a “cure” in the media) never live up to their promise and never get approved.”
Also many new drugs touted as effect do not live up to their promises even after approval.

Rgds, Doug

February 5, 2017 at 6:51 pm  #1290006    
JimC Forum Moderator
JimC Forum Moderator

Hi Doug,

The issues you raise (regarding pharmaceutical companies and the inability to finance clinical trials of certain types of treatment) have been discussed here numerous times over the years. You are correct when you say that the GRACE faculty and most oncologists would not recommend the treatments you describe because of the lack of clinical trial evidence of their efficacy, though they would not specifically state that such lack of proof means that they might not be effective.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 13, 2017 at 12:53 pm  #1290061    

roamer321

I thought there were medical professionals on this site that would answer my questions and address my issues.

@jimc You say that the issues I raised have been discussed numerous times. What were the consensus? Can you direct me to some threads.

We go to see the Oncologist in the morning I will ask him if he would ever deviate from the standard of care.

February 13, 2017 at 7:30 pm  #1290063    
JimC Forum Moderator
JimC Forum Moderator

An example of such a discussion, which includes reference to Ketogenic diets in a cancer context, can be found here: http://cancergrace.org/cancer-101/2010/09/02/does-sugar-feed-cancer/ In that discussion, Dr. West clearly states the consistently-held view of the GRACE faculty that:

“There may well be useful conclusions to draw from Dr. Seyfried’s work, but whatever that research offers, it isn’t strong clinical data on human cancer patients that shows better outcomes in patients who follow one diet over another. If these hypotheses are correct, they will still remain hypotheses until they are actually tested in clinical trials. Until then, both sides are operating more on faith-based perspectives that we can justify with scant, poor evidence to justify our own predispositions. I don’t think that the argument can or should be made that “sugar is terrific”, but rather that at this time, overall, there isn’t significant evidence that diet has a very significant effect on clinical outcomes in patients with known cancers. Absence of proof isn’t proof of absence, but I think it’s wrong for either side to take a dogmatic view here.”

The bottom line is that, given a choice between a treatment for which there is strong clinical trial evidence of efficacy, and one for which that evidence is missing or largely anecdotal, the faculty here, along with many practicing oncologists, will choose the treatment backed by clinical trial evidence. That opinion is unlikely to change unless clear evidence is presented to support the efficacy of a particular treatment.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 15, 2017 at 4:51 am  #1290072    

roamer321

Was there a time when Opdivo was thought of in the same light (untested unproven)? Did it get funding to further the research? I know you will not like this but I have to say it. Dietary intervention will never get funding like a pharmaceutical intervention and it is the profit potential and that is not a bad thing for a company to make a profit. It is just the facts.

You have dragged this thread off topic.

February 15, 2017 at 6:31 am  #1290073    

scohn

Hi roamer321. I am so sorry to hear of your wife’s diagnosis. I too have been rapidly learning about cancer biology since my wife’s diagnosis almost two years ago.

As a cell biologist, I also have taught a course on biomedical ethical issues, such as pharmaceutical company funding and control of most clinical trials. I share your concerns for the way profits can skew the type of approaches being investigated, but the companies are not monolithic, and there are in fact nutritional and other studies being done, and an entire center at the National Institutes of Health for studying alternative and complementary treatments.

Dietary intervention is, in fact, continuing to be explored, (see articles below). Their basic conclusion is that while ketogenic diets might slow tumor progression in mice in some conditions, and may help in quality of life while undergoing therapy, there is no strong evidence yet that it can halt cancer progression. [Note: There is also separate evidence that mice are poorer models for how cancer works in humans than some other animals like rats]
cancerres.aacrjournals.org/content/71/13/4484
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3954599
http://www.sciencedirect.com/science/article/pii/S2213231714000925
nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-8-54

The upshot of these studies is that while complementary approaches have been shown to sometimes help, they haven’t shown any type of consistent strong control of cancer. Anecdotally, my wife has been on a low-carb diet for a number of years (not quite ketogenic) and it did not keep her from getting cancer or impeding its progression (although we hope it hope it has helped keep her in the relatively good health she has had during treatment).

I know these treatment decisions can be excruciating, but as a scientist who is also religious, I know how science, faith, and heart can work together.

May your wife’s treatment, standard or not, be effective and long lasting.
Hugs and Prayer


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

February 15, 2017 at 6:35 am  #1290074    

scohn

Roamer321,
One other point. Our oncologist has always been open to any conversation about treatment (e.g. we talked to him once about probiotics in concert with the chemotherapy) so feel free to discuss any and all concerns you have with your oncologist about any form of treatment.


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

February 15, 2017 at 7:50 am  #1290076    

cards7up

Sorry to say but the ketogenic diet has been in clinical trials and still is in clinical trials. As for nutrition, they didn’t go to medical school for nutrition and if you want help with that, then see a nutritionist.
Take care, Judy
https://clinicaltrials.gov/ct2/results?term=ketogenic+diet&recr=Open


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

February 15, 2017 at 1:28 pm  #1290078    

scohn

I agree Judy – My wife has a nutritionist as part of the care team, and although we haven’t contacted her much, she has been great. And I am anxious to see the results of the ketogenic diet trials. Some early animal studies showed an enhancement of the chemo/radiation effects on reducing tumors, but little direct effects on its own, so I will be interested to see how the diets pan out in the trials.

Thanks for the info!

Best,
scohn


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

February 20, 2017 at 8:40 am  #1290149    

roamer321

@schon Please take a look at this video. I think you will enjoy it. Let me know what you think.



February 21, 2017 at 9:03 am  #1290153    

scohn

Hi roemer321.

Interesting video, but it mixes a lot of cell biology phenomena together. There is no doubt that poor nutrition can increase oxidative stress on cells and weaken them, and in general increase the likelihood of a large range of metabolic disorders (and possibly increase rates of mutational stress as well). But, these are likely most beneficial as a type of preventative approach to keep cells healthy, and the immune system operating at top efficiency.

The question of these roles once cancer has been established is much less clear. In particular, take the case of the mitochondria. Many current models for cancer tumors suggest that mutations of cell control genes are the primary drivers. These mutated proteins overstimulate cell growth signals, and the continual overregulation of these pathways often require a huge amount of energy. This leads to two effects – one, the stimulation of tumors to increase nearby blood supply for food (hence the use of Avastin and other anti-blood vessel drugs) and the conversion of tumors to glycolysis (which provides cellular energy much more rapidly, but much less efficiently). How mitochondria fit in isn’t exactly clear, but once a cell shifts to a mainly glycolysis/fermentation pathway, the input molecules for mitochondrial activity are greatly reduced, and the mitochondria can be compromised.

It certainly is a possibility that a ketogenic diet will likely stress the tumor cells more, but since the mitochondria often become adapted to that stressed environment, the tumor cells can still often maintain a steady supply of cellular energy, and may grow slower, but not die. That is why chemotherapies that target the actual mutated driver molecules, or even that generally target overstimulated glycolytic cells, can be effective. So the question, which hopefully these clinical trials will begin to address, is whether additional tumor stress caused by a ketogenic diet will enhance the effectiveness of chemotherapies.


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

February 21, 2017 at 12:12 pm  #1290154    

roamer321

I received a private reply from a forum moderator. It was insinuated again that I am blaming Big Pharma for the lack of research on certain treatment options and that is not the case.

I just re-read my original comment and it looks like most of you want to take this off on a tangent as to not address my original request. I see that no doctor has replied. I was referred to this forum from another forum and told I could get a doctor to reply. I knew that it would be hard for them to do so but I took a chance.

The moderator inferred that this was not the forum for my question. I have received the same treatment from the folks at the other “cancer support” forum.

All of the previous posters took this off topic and should be reprimanded by the moderators. I should not be the one called out for something I never said or even referred to. The post I did make were in response to the offending posters and I will not make that mistake again.

Unless you are a Oncologist please do not reply to this post.

February 21, 2017 at 12:42 pm  #1290155    

scohn

Hi roamer321, sorry for replying but I was just hoping that you weren’t thinking I was one of the responders who should be reprimanded, since you asked me what I thought of the video.

All the best, and I hope Dr. West or one of the other doctors will respond to your original question regarding the standard of care.

Best, scohn


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

February 21, 2017 at 1:09 pm  #1290156    

roamer321

scohn
JohnC was the one who originally took my post off topic. I responded to him and you like I do anyone who discounts the Ketogenic Diet and its proven benefit to cancer patients. You were just following that side track.
I hope you all know that all anecdotal evidence is not wrong.

February 21, 2017 at 3:14 pm  #1290158    
Dr West
Dr West

Doug,

The current standards of care are based on a combination of the evidence supporting best efficacy along with the judgments of some of the leading specialists in the field. Some, like ASCO, are very conservative, recommending very little beyond what has ironclad proof, while others, such as NCCN and a subscription commentary service called UpToDate, include a combination of hard evidence and judgment that is often more liberal.

I agree that there can be a mismatch between what is best for patients and what some doc’s recommend. That’s actually why I started GRACE, because I saw that docs could sometimes not know the best treatment (in an increasingly complex world of cancer results), may consider the best treatment too toxic and hard to manage, and/or that they may be paid better for a less than optimal option.

However, the current standards of care are really the definition of the best evidence, and I disagree that there are curative therapies that are in the pipeline that are ignored by oncologists because they have financial self-interest in ignoring them. They hold them to the standard of actual clinical evidence showing a significant benefit in a population of patients. Whether ketogenic diet, Budwig diet, alkaline therapy, cannabinoids, dichloroacetate, or anitneoplastons, these all have zealous followers and evidence only of a vaguely plausible lab-based premise for how they could work, some anecdotal reports of people who say they’ve had a miraculous response, but no denominator of how many people tried these and failed. No reputable studies.

You can say that there’s not enough financial incentive to study them, but I’d say that if any of these interventions worked even a fraction as well as advertised, there would be armies of cured patients. There are not. It shouldn’t be that hard to prove amazing treatments.

Finally, we shouldn’t forget that those promoting these treatments invariable make money by doing that. Please prove me wrong.

-Dr. West

February 21, 2017 at 3:21 pm  #1290159    
JimC Forum Moderator
JimC Forum Moderator

roamer321,

I assume that your latest post is directed to me. To be honest, I do not understand why you feel that I took this thread off topic. If I did, I apologize to you.

However, this is a public forum to which any member can post, and I think a few things need to be stated to clarify the position held by the faculty and oncologists in general. It is always up to you to decide whether to read further.

You originally asked about the oncologist’s view of standard of care. I tried to describe the process they follow in making treatment recommendations, and the circumstances that would lead them to recommend other treatments. I focused on clinical trials, but there are other types of therapies they may acknowledge, mostly used as a complement to standard treatments (such as nutrition, supplements, for example), which were covered in posts by other GRACE members, but that without the type of strict proof of efficacy oncologists generally would not suggest them as the primary treatment for a cancer patient. Given your initial post, that information summarizes the view of the GRACE faculty and most oncologists.

In a subsequent post, you mentioned the Ketogenic diet and on more than one occasion have described its “proven benefit”. It is certainly appropriate for you to say this if you believe that there is sufficient proof of its efficacy. What you originally asked, though, dealt with a doctor’s view of the standard of care and willingness to deviate from it, and what several of us have stated is that from the oncologist’s point of view, some suggested therapies (such as the Ketogenic diet) do not meet their standards of proof. You can argue that their standards of proof are too stringent or are incorrect, but the answer to your question remains this: most scientifically-trained oncologists will require proof of efficacy as determined by randomized clinical trials in human subjects.

[continued]


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 21, 2017 at 3:26 pm  #1290160    
JimC Forum Moderator
JimC Forum Moderator

[continued from previous post]

And in their world, anecdotal evidence is felt to be insufficient. It is your right to disagree, but this site is based on the oncologist’s view of scientific proof, so it must be made clear to users of this site that the opinions you express are not those held by the oncologists who contribute their expertise here.

I see that Dr. West posted while I was writing my own post. As you can see, his opinion is identical to that which several of us have previously expressed, and what I have stated in this post.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 21, 2017 at 4:39 pm  #1290166    

roamer321

Dr West,
Nowhere have a said that Oncologists have a financial self interest in ignoring therapies. But you did suggest that anyone promoting the therapies I suggest are in it for the money. The therapies are ignored by the pharmaceutical companies and I understand their reasons and do not blame them.
Neither Dr Dominic D’Agostino or Dr Adrienne Scheck are making money promoting treatments. They are doing research and spreading the word about a possible treatment that is non-toxic but could be beneficial.
My wife’s oncologist has made $501K in the last 2 years from pharmaceutical companies and her infusion this morning cost $33k. If you want to talk about money.

I may sound unreasonable but all I am doing is trying to heal my wife. And like I said I have more “skin in the game” than her “team”. She had her left lower lobe removes for an adenocarcinoma. She had Cisplatin/ Alimta chemo that did not work and the cancer spread. She is now on Opdivo that is destroying her thyroid. She has itching and muscle aches and pains. After the first 8 infusions the Oncologist said that this drug works on a small percentage and when it does it works good. And he said it is working on my wife.

I appreciate your stated reasons for starting Cancer Grace and would like you to point me to some threads that bear that out.

May God bless you and your efforts.
Doug

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