Doctors opinion of Standard of Care

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

This topic contains 10 replies, has 4 voices, and was last updated by  scohn 4 days, 4 hours ago.

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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 efficacy. 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 adenocarcinoma, right middle 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 maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets 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 adenocarcinoma, right middle 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 maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets 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 adenocarcinoma, right middle 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 maintenance, not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective – tumor growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable.

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