Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member Latest Breaking News Editorials & Other Articles General Discussion The DU Lounge All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search

pnwmom

(110,254 posts)
Wed Jul 19, 2017, 10:29 PM Jul 2017

The problem with glioblastoma is that completely removing all the visible tumor --as the surgeon did

with McCain's tumor -- isn't curative. By the time glioblastoma is diagnosed, it's usually seeded itself in other areas in the brain. So they removed everything they could see in the primary site, but he needs further treatment to fight cancer cells in the rest of his brain.


https://www.statnews.com/2017/07/19/heres-know-sen-john-mccains-brain-cancer-diagnosis/

What treatments come next?

According to the note from McCain’s physicians, “treatment options may include a combination of chemotherapy and radiation.” But it’s not clear yet what the timetable is for those treatments. For now, McCain is home in Arizona. “Further consultations with Senator McCain’s Mayo Clinic care team will indicate when he will return to the United States Senate,” his office said in a statement.

What’s the prognosis?

Not good. After undergoing surgery, radiation, and chemotherapy, some 70 percent of patients suffer further spread of their glioblastoma along with such serious side effects as cognitive decline and strokes. In a statement, McCain’s physicians said that “the tissue of concern was completely resected by imaging criteria,” meaning that when they performed the procedure to remove a blood clot above his left eye last week they got everything that was visible. Unfortunately, “micro-metastases” — just a few malignant cells that spread from the initial tumor — cannot be seen on CT or MRI scans. Barely 5 percent of patients with glioblastoma are alive after five years, and only half make it past 15 months.

76 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
The problem with glioblastoma is that completely removing all the visible tumor --as the surgeon did (Original Post) pnwmom Jul 2017 OP
Hate his politics, but he is no coward GulfCoast66 Jul 2017 #1
That's what Ted Kennedy did. I expect McCain to fight this, too. n/t pnwmom Jul 2017 #2
Hate his politics but he was decent in negating the woman in '08 who tried to paint O as a... brush Aug 2017 #76
This is a nasty disease peggysue2 Jul 2017 #3
It's supposed to be very rare and yet pnwmom Jul 2017 #4
We have a family friend peggysue2 Jul 2017 #11
It is awful, and I'm very sorry about your friend. pnwmom Jul 2017 #12
Thanks for the reply, pwnmom peggysue2 Jul 2017 #41
Keto for brain cancers Jannod Jul 2017 #45
Interesting peggysue2 Jul 2017 #47
Keto for brain cancers Jannod Jul 2017 #43
My father died of it spinbaby Jul 2017 #22
I'm very sorry, spinbaby. pnwmom Jul 2017 #23
Very rare? Wow. I myself know 5 people who died of this. nt Nay Jul 2017 #24
I lost my husband from this very same spartan61 Jul 2017 #30
My condolences. Jannod Jul 2017 #44
We did a brain biopsy 1 month ago on a 20-year old Horse with no Name Jul 2017 #5
No, not on anyone. But a 20 year old -- what a tragedy. n/t pnwmom Jul 2017 #6
It was tragic. Horse with no Name Jul 2017 #8
a ketigenic diet helps this soecific type of cancer. KewlKat Jul 2017 #7
It doesn't. nt Horse with no Name Jul 2017 #9
If you'd care to read about it here are a couple. Second article talks about why US doesnt trial KewlKat Jul 2017 #33
More evidence Jannod Jul 2017 #59
No. It doesn't. Please, no woo-woo here on this topic. longship Jul 2017 #10
As long as someone doesn't forgo standard treatments to try this, then why not? pnwmom Jul 2017 #15
No diet is a cure for cancer. longship Jul 2017 #17
There is no cure for glioblastoma period. That was not the claim. And if a patient with an incurable pnwmom Jul 2017 #19
Hint: Hope does not help with glioblastoma either. longship Jul 2017 #20
Hope is an ESSENTIAL element when facing glioblastoma. pnwmom Jul 2017 #25
+1000. nt ecstatic Jul 2017 #28
+1,000,000 former9thward Jul 2017 #52
You said "The only hope is to fight the battle with science and medicine" KewlKat Jul 2017 #31
Keto for glioblastomas Jannod Jul 2017 #46
There is evidence that starving cancer works Iwasthere Jul 2017 #55
Keto for brain cancers Jannod Jul 2017 #40
Thanks. Will review it. nt longship Jul 2017 #42
Keto for brain cancers Jannod Jul 2017 #60
I am very skeptical of this, but will consider it. longship Jul 2017 #61
Keto for brain cancer Jannod Jul 2017 #63
Sorry, the science is not exactly there, and anecdotal evidence does not count in science. longship Jul 2017 #64
Keto for brain cancers Jannod Aug 2017 #74
I'll stand by my posts. Keto diet for brain cancer is bunkum. longship Aug 2017 #75
Click here and learn. longship Jul 2017 #65
Jannod, read your own study conclusions. This has efficacy as Hortensis Jul 2017 #67
Keto for brain cancers Jannod Jul 2017 #69
There is no such thing as alternative medicine. longship Jul 2017 #68
Welcome to DU, Jannod! pnwmom Jul 2017 #54
My friend is using novocure and a keto diet Beaverhausen Jul 2017 #50
Thanks for mentioning this. I did a little reading and there are some interesting findings. Lucinda Jul 2017 #13
Wrong, just stop with the Dr. Mercola woo obamanut2012 Jul 2017 #21
Knowledge is power. What is dangerous is the orange man in our WH. KewlKat Jul 2017 #32
What is also dangerous is alternative medicine! longship Jul 2017 #66
Keto for brain cancers Jannod Jul 2017 #49
Keto works Jannod Jul 2017 #38
Not trying to nitpick... Docreed2003 Jul 2017 #51
KD used for glioma and glioblastoma. Read the study. Jannod Jul 2017 #56
Skepticism is good but also with Pharma Jannod Jul 2017 #57
Glioblastoma v glioma Jannod Jul 2017 #71
I'm aware of the grading and classification, thanks. Docreed2003 Jul 2017 #72
Glioma v gluoblastoma Jannod Jul 2017 #73
More evidence for keto Jannod Jul 2017 #58
Its a particularly nasty cancer. I wouldn't wish it upon anyone. Nailzberg Jul 2017 #14
I wish Senator McCain well in his recovery. Warren DeMontague Jul 2017 #16
There are promising new options being researched misanthrope Jul 2017 #18
Also Keto Diet Jannod Jul 2017 #39
my FIL died of this.. after they did the surgery he was actually worse.. samnsara Jul 2017 #26
It is unlikely that all of the tumor was removed which is why the survival rate is so low Gothmog Jul 2017 #27
I know 2 adults and one child who survived glioblastoma Justice Jul 2017 #29
Wow! An almost 10 year survivor. pnwmom Jul 2017 #36
I'll argue this crosses over into the realm of political discussion in a few areas: Warren DeMontague Jul 2017 #34
I know of a five men around me with the same diagnosis- bathroommonkey76 Jul 2017 #35
The obvious problem with your argument: LeftyMom Jul 2017 #37
Doctors say it this is a "rare" cancer bathroommonkey76 Jul 2017 #53
It's a terrible disease. I haven't liked McCain's political positions The Velveteen Ocelot Jul 2017 #48
The facts on ketogenic diets and cancer. longship Jul 2017 #62
"What treatments come next?" Nevernose Jul 2017 #70

GulfCoast66

(11,949 posts)
1. Hate his politics, but he is no coward
Wed Jul 19, 2017, 10:40 PM
Jul 2017

Would not surprise me if he opted to function as long as possible and then for palliative care.

That man has faced death more than most humans and will not die frightened.

I wish him the best and hope he recovers.

 

brush

(61,033 posts)
76. Hate his politics but he was decent in negating the woman in '08 who tried to paint O as a...
Fri Aug 4, 2017, 01:38 PM
Aug 2017

non-American and he did the right thing last week with his vote to preserve Obamacare.

I wish him the best.

peggysue2

(12,528 posts)
3. This is a nasty disease
Wed Jul 19, 2017, 11:00 PM
Jul 2017

Everything you noted, pwnmom, is sadly true. The prognosis is not good although McCain's fighting spirit may buy him some time. Cancer is a cellular disease and this particular cancer tends to send tendrils around and through the connective tissue. They removed the primary tumor which is good; that in itself will give him some time. But overall, he's been dealt a very bad hand.

This is going to be monstrously hard on his family. MaCain himself? He's a crusty old bird and I absolutely believe what his daughter wrote: that right now he's the calm, cool one. As bad as it will be for his wife and children, I suspect it will particularly hard on his mother. No one should have to watch a son or daughter die, regardless of how old they are. Cancer is hard, can be crushing for family members. It's a painful journey.

pnwmom

(110,254 posts)
4. It's supposed to be very rare and yet
Wed Jul 19, 2017, 11:03 PM
Jul 2017

we've known half a dozen people who have had this disease. And it is brutal.

peggysue2

(12,528 posts)
11. We have a family friend
Thu Jul 20, 2017, 01:01 AM
Jul 2017

who was diagnosed about 4 months ago. Out of the blue. Awful.

pnwmom

(110,254 posts)
12. It is awful, and I'm very sorry about your friend.
Thu Jul 20, 2017, 01:12 AM
Jul 2017

The statistics are somewhat better than they were ten years ago. Hopefully they will continue to develop treatments that extend life even longer.

But this is a huge blow.



peggysue2

(12,528 posts)
41. Thanks for the reply, pwnmom
Fri Jul 21, 2017, 12:49 AM
Jul 2017

Just picked it up. Our friend, unlike McCain, was not able to have his tumor removed because of the location. Surgery would profoundly impair his motor skills. That being said, he's had the radiation and is now receiving chemo. Still, prognosis is not good and chemo wears you out quickly.

But I am struck by the number of people in my own orbit who have been diagnosed with brain cancers of one type or the other. This will be the third in the last decade. And then, there are others--public figures--like John McCain. Yes, any diagnosis like this is a huge blow. Certainly puts things in perspective. Health issues can do that every time.

Jannod

(18 posts)
45. Keto for brain cancers
Fri Jul 21, 2017, 01:29 AM
Jul 2017

Last edited Fri Jul 21, 2017, 11:30 AM - Edit history (1)

I would absolutely encourage them to look into the keto diet. In the meantime just give up all sugars and grains. What's the harm? I'll find out how much my friend is okay with having shared. U of Pitt published a case study that sounded similar to my friend's but the patient was a few decades older. In the Pitt study I think the tumor was gone in 2 months, which is pretty impressive.

Hopkins study: https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428

peggysue2

(12,528 posts)
47. Interesting
Fri Jul 21, 2017, 10:59 AM
Jul 2017

I know when my father-in-law was diagnosed with stage 4 colon cancer, a nutritionist was assigned to his case. As you said, looking into the diet angle certainly can't hurt. I'll pass it along.

Thanks.

Jannod

(18 posts)
43. Keto for brain cancers
Fri Jul 21, 2017, 01:00 AM
Jul 2017

My friend was treated successfully at Johns Hopkins with a keto diet. No sugar, no fruit, few veggies. <20g carbs daily. Here's the study:
https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428
I'm working to de-sugar my diet for this reason and for inflammation. I would absolutely do keto if I had this dx. What's there to lose. Enjoy whole cream, butter, marscapone, good cheeses. No glucose = no food for the cancer.

Among the arguments against by those who claim it's woo woo is that it's hard for some patients to stick to. So is giving up sugar for diabetics. Some can't and do poorly. My father in law followed strict diabetes diet, enjoyed bacon, and lived to 96. Diet impacts health in many ways. And there's nothing beneficial about sugar.

Not that long ago the doctors who focused on gut health were ridiculed. Now that's become mainstream. I hope you'll share the study with your friend.

Personally, I think sticking to an extreme low carb diet would be easier than and preferable to chemo and radiation.

spinbaby

(15,387 posts)
22. My father died of it
Thu Jul 20, 2017, 09:57 AM
Jul 2017

It's apparently seen most often in older men. When my father was diagnosed 25 years ago, glioblastoma was considered to be incurable and he chose not to treat it at all. He was dead three months later. I don't know if it's become more treatable since then, but it's a nasty disease that my father's doctor compared to a fungus in the brain.

spartan61

(2,091 posts)
30. I lost my husband from this very same
Thu Jul 20, 2017, 11:14 AM
Jul 2017

cancer. I understand the rough fight ahead for the whole McCain family. I will certainly remember all of them in my prayers.

Horse with no Name

(34,236 posts)
5. We did a brain biopsy 1 month ago on a 20-year old
Wed Jul 19, 2017, 11:05 PM
Jul 2017

The patient was working full time.
Came back Grade 4 Gliosblastoma.
She is now disabled.
It's an ugly tumor.
I wouldn't wish it on my worst enemy.

Horse with no Name

(34,236 posts)
8. It was tragic.
Wed Jul 19, 2017, 11:12 PM
Jul 2017

She lost her father to the same disease a few years ago.
Cancer knows no boundaries.

KewlKat

(5,809 posts)
33. If you'd care to read about it here are a couple. Second article talks about why US doesnt trial
Thu Jul 20, 2017, 07:30 PM
Jul 2017

Metabolic management of glioblastoma multiforme using standard therapy together with a restricted ketogenic diet: Case Report

Results

After two months treatment, the patient's body weight was reduced by about 20% and no discernable brain tumor tissue was detected using either FDG-PET or MRI imaging. Biomarker changes showed reduced levels of blood glucose and elevated levels of urinary ketones. MRI evidence of tumor recurrence was found 10 weeks after suspension of strict diet therapy.

Conclusion

This is the first report of confirmed GBM treated with standard therapy together with a restricted ketogenic diet. As rapid regression of GBM is rare in older patients following incomplete surgical resection and standard therapy alone, the response observed in this case could result in part from the action of the calorie restricted ketogenic diet. Further studies are needed to evaluate the efficacy of restricted ketogenic diets, administered alone or together with standard treatment, as a therapy for GBM and possibly other malignant brain tumors.


https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-7-33


==================
The Restricted Ketogenic Diet: An Alternative Treatment Strategy for Glioblastoma Multiforme

Conclusions

We provide information on a new, alternative treatment strategy for GBM
management that targets tumor energy metabolism. The objective of
this new therapeutic strategy is to change the metabolic environment of
the tumor and the host.
Access to glucose and glutamine within the
tumor microenvironment provides neoplastic GBM cells and associated
host stromal cells (macrophages) with fermentable fuels necessary for
maintaining the growth and survival of malignant brain tumor cells in the
hypoxic microenvironment. The low-carbohydrate, high-fat ketogenic
diet, will reduce circulating glucose levels and will elevate circulating
levels of ketone bodies especially when consumed in restricted amounts
(RKD). A transition from glucose to ketone bodies will restrict glucose
availability to the malignant tumor cells while protecting and enhancing
the health and vitality of normal brain cells. The therapeutic efficacy of
the RKD against GBM can be enhanced when combined with drugs that
also target or reduce access to glucose and glutamine. A use protocol is
presented for assisting physicians and GBM patients in implementing the
RKD as a treatment strategy. Although the RKD is less toxic and
potentially more effective in managing GBM than the conventional
standard of care, considerable patient education, motivation, and
discipline will be necessary for implementing this therapy. Considering
the unfavorable outcome of most GBM patients treated with the current
standard of care, the RKD treatment strategy could be an attractive
treatment option for some GBM patients.


http://www.rsg1foundation.com/docs/patient-resources/The%20Restricted%20Ketogenic%20Diet%20An%20Alternative.pdf

Jannod

(18 posts)
59. More evidence
Sat Jul 22, 2017, 03:04 PM
Jul 2017

From researchers at Boston College:

Hence, the RKD can be an effective non-toxic therapeutic option to the current standard of care for inhibiting the growth and invasive properties of malignant brain cancer.

http://www.sciencedirect.com/science/article/pii/S0920121111002063

pnwmom

(110,254 posts)
15. As long as someone doesn't forgo standard treatments to try this, then why not?
Thu Jul 20, 2017, 01:59 AM
Jul 2017

It might help with some individuals and it won't hurt.

This is an NIH-funded study conducted by researchers at Michigan State University:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4371612/

Conclusions

We conclude that 1. KD is safe and without major side effects; 2. ketosis can be induced using customary foods; 3. treatment with KD may be effective in controlling the progression of some gliomas; and 4. further studies are needed to determine factors that influence the effectiveness of KD, whether as a monotherapy, or as adjunctive or supplemental therapy in treating glioma patients.

longship

(40,416 posts)
17. No diet is a cure for cancer.
Thu Jul 20, 2017, 04:45 AM
Jul 2017

About your linked study... First, it is too small. Second, even the conclusions state that the results are preliminary and that further study is needed.

I highly suspect that this has not been favorably peer reviewed.

pnwmom

(110,254 posts)
19. There is no cure for glioblastoma period. That was not the claim. And if a patient with an incurable
Thu Jul 20, 2017, 09:34 AM
Jul 2017

illness can possibly get some benefit from this -- not a cure -- then why not. As the researchers said it won't hurt. The people with glioblastoma who might want to try this don't have the time to wait for larger-scale studies.

You don't seem to understand how important HOPE is for patients in this situation -- and giving them a sense of agency. When the doctors don't have anything more to offer -- as I said, no one should forgo standard treatments for this - then trying this could be a reasonable option.

longship

(40,416 posts)
20. Hint: Hope does not help with glioblastoma either.
Thu Jul 20, 2017, 09:49 AM
Jul 2017

The only hope is to fight the battle with science and medicine, knowing full well that it is a battle one is likely going to ultimately lose, probably sooner than later. Yet there might be a sort of hope that ones treatment may give rise to a new treatment, however hopeless.

That is why I would fight. However, there is zero evidence that diet can suppress cancer. ZERO!!

The claim of the cited paper is precisely that glioblastoma can be effected by diet. This, in spite of the fact that it is at best a preliminary study whose conclusions in no way follow from the data.

The lesson here is that researchers need to stop making shit up.

pnwmom

(110,254 posts)
25. Hope is an ESSENTIAL element when facing glioblastoma.
Thu Jul 20, 2017, 10:16 AM
Jul 2017

It is what gives patients the strength to fight the battle, to undertake the grueling treatments science and medicine offer.

Back when the prognosis was six months, I knew a man -- and a family -- who was determined to beat glioblastoma. Against all the realists like you, that determined glioblastoma-sufferer lived for almost 4 years with the disease -- long enough to see his children into adulthood. HOPE is what made him willing to try any experimental cure that his doctors suggested to him. Hope helped keep him alive far beyond the point science said he was supposed to. The realists said 6 months. He lived almost 4 years.

And you are wrong to say there is "zero evidence" about the keto diet. That study itself provides SOME evidence, obviously. You personally wouldn't be swayed by it. Fine. Hopefully you never get glioblastoma, or you might be surprised what you are willing to try.

KewlKat

(5,809 posts)
31. You said "The only hope is to fight the battle with science and medicine"
Thu Jul 20, 2017, 07:18 PM
Jul 2017

Alright then, there IS science behind the use of the ketogenic diet with glioblastoma. Also with many cancers. I never said in my original post that it would cure cancer, only that it may help, meaning that it may relieve some symptoms perhaps give them more time, etc. Glucose feeds all cancers and ketogenics reduces glucose and increases ketones. Ketogenics and ketones are now being studied for a variety of diseases/illness. Alzheimer and other neurological diseases also respond in a positive way to ketones and many have been "helped" by following a ketogenic diet or using MCT oil or exogenous supplementation of ketones. I recall extreme resistance which continues today on the benefits of medical marijauna.

Jannod

(18 posts)
46. Keto for glioblastomas
Fri Jul 21, 2017, 01:41 AM
Jul 2017

Exactly! You don't have time to wait and there no harm in following a keto diet, far less harm and risk than surgery, radiation, and chemo. But there's no money to be made promoting a keto diet so not a lot of businesses jumping up to fund studies. Which is why we need govt funded medical research.

Jannod

(18 posts)
40. Keto for brain cancers
Fri Jul 21, 2017, 12:44 AM
Jul 2017

A friend was in this study. No standard treatment. Only diet. Tumor gone in less than four months (two, as I recall). That was over 5 years ago. Still on keto diet and still apparently cancer free and exceedingly healthy.

Heres the study:
https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428


Jannod

(18 posts)
63. Keto for brain cancer
Sun Jul 23, 2017, 12:39 AM
Jul 2017

I would have thought it was bunk if I hadn't first met a survivor. There's a lot on the internet about it. When I first met the person who'd been treated with Keto, all I knew was that they followed a weird diet--no refined sugar and mostly meats and cheeses. I'm no scientist, but a biochem intern in our office explained how it made perfect sense. Keto diet means no glucose in the brain means the cancer dies. I assume the recurrent tumor was caught early. On keto, the tumor was gone in two months. Per the doctors, friend is on the diet for life. In the meantime, the person is doing great, very active, and is functioning just fine in a high level position in a large organization.

I think it's wise to be equally skeptical of anyone who stakes their reputation on proving that all "alternative" medicine is woo.

longship

(40,416 posts)
64. Sorry, the science is not exactly there, and anecdotal evidence does not count in science.
Sun Jul 23, 2017, 01:46 AM
Jul 2017

So the "I know somebody who" blah, blah, blah does not count. That is not how science works.

There are some encouraging preliminary studies, but they tend to be mouse studies and small, little controlled, pilot studies. Science-based medicine requires much more than that.

Please read my response in this thread from oncologist, David Gorski, who goes through this in quite a bit of detail. Note that he does not entirely dismiss the ketogenic diet, but he does not support it because the science is just not there yet. Plus, there is a quack connection to it, always worrisome as these things go. It would be unethical to do a study where people forgo chemotherapy and radiation for ketogenic diet. That should be sufficient to convince anybody that this very well may be quackery. At least it apparently does little harm, if one can tolerate it. But by all means, do not forgo chemo or radiation for it.

As far as I am concerned, there is no there there. So far, that is what the science says as well.

I'll stand by that as long as that is what the science says.

Jannod

(18 posts)
74. Keto for brain cancers
Fri Aug 4, 2017, 09:03 AM
Aug 2017

When I first learned of my friend's successful treatment I read up on it, including Gorski's opinion. I think the science is there in terms of how the tumor requires glucose and have had biochemist concur. I've read enough Gorski and Orac articles to recognize the labels of "woo" and "quackery" to discredit anything that hints of alternative medicine or was ever promoted by Mercola. Gorski describes himself as a humble doctor when he clearly is not. My impression is he has more hubris than humility. He's also a breast cancer oncologist, so I wouldn't turn to him for treatment of brain cancer.

I couldn't agree more that until there are more studies regarding how ketosis affects brain tumors in humans it would be prudent not to forgo conventional treatments for most brain tumors. However, some of the patients, including my friend, did not require any other treatment since, after a few months of keto, there was no tumor to treat. Perhaps it's still lurking, but regular screenings so far indicate the cancer is gone. With higher grade cancers the risks are too great to not use the big guns, but perhaps that should include keto. With low grade perhaps a trial of keto does the least harm since chemo and radiation carry significant risks. Keto might be harder to stick to since it requires a certain discipline on the part of the patient but I would certainly find it more tolerable than chemo. In the meantime, if a treatment shows promise for an disease with a bad prognosis, I wouldn't necessarily want to wait for more studies.


longship

(40,416 posts)
75. I'll stand by my posts. Keto diet for brain cancer is bunkum.
Fri Aug 4, 2017, 11:55 AM
Aug 2017

And only a ignorant fool with a death wish would forgo recommended treatment for it.

I am done with this thread.

Hortensis

(58,785 posts)
67. Jannod, read your own study conclusions. This has efficacy as
Sun Jul 23, 2017, 05:19 AM
Jul 2017

an ADJUNCT to standard treatments, not as a replacement. The findings are that adjusting diet can help improve outcomes.

"Hence, the RKD can be an effective non-toxic therapeutic option to the current standard of care."

"to the current standard of care" are the rest of the words to take note of here.

Jannod

(18 posts)
69. Keto for brain cancers
Mon Jul 24, 2017, 11:01 PM
Jul 2017

If I inferred that a patient should do the KD alone that wasn't the intent. Glioblastoma is pretty much a dead-end diagnosis. There are reputable doctors like the team at Hopkins who believe it holds a lot of promise. Since the conventional treatment doesn't offer much hope I would encourage anyone with brain cancer to read up on KD and make the decision for themselves. My friends is one of those in study who opted for only the diet. The tumor was gone in a few months. I suppose it could have been the prayer chain or visualization therapy, but my bet is that the lack of glucose starved the tumor. More studies will certainly follow so either the evidence will grow or it won't. In the meantime, we've got a few impressive anecdotes as long as the patients remain cancer free. And no harm was done.

longship

(40,416 posts)
68. There is no such thing as alternative medicine.
Sun Jul 23, 2017, 09:01 AM
Jul 2017

There is only medicine, based on science.

And BTW, science eschews anecdotal evidence. It is unreliable and useless within science. In a scientific study one strives to control parameters so that biases do not creep into the conclusions.

I highly suspect that ketogenic diet cancer claims are utter rubbish. This is especially true since one of the foremost promoters of it has associated with notable quack Joseph Mercola.

Still, David Gorski, a real oncologist, says that there are stage I/II clinical trials ongoing, and at least the diet seems to do little harm, for those who can tolerate the diet. Apparently some in the very small preliminary studies dropped out because they could not. That is not promising as these things go.

Smells like woo woo to me. But we'll soon see.

Note: It would be unethical to propose a study where patients forgo conventional treatment (chemotherapy and/or radiation) for this diet alone. One could not get permission to do such a study. Why? Because all the basic science says that diet alone cannot cure cancer. That plus the basic science claims by the proponents of ketogenic diet for cancer treatment have been falsified.

See my post below from David Gorski, who has delved deeply into these issues.

Beaverhausen

(24,697 posts)
50. My friend is using novocure and a keto diet
Fri Jul 21, 2017, 06:00 PM
Jul 2017

Her tumors were inoperable and she is 3 years past diagnosis. She did radiation and chemo and so far her tumors have not grown.

Something is working for her, thank Goddess

Lucinda

(31,170 posts)
13. Thanks for mentioning this. I did a little reading and there are some interesting findings.
Thu Jul 20, 2017, 01:30 AM
Jul 2017
I'm highly interested in the ways diet can work in disease treatment. Appreciate you mentioning this!

obamanut2012

(29,340 posts)
21. Wrong, just stop with the Dr. Mercola woo
Thu Jul 20, 2017, 09:55 AM
Jul 2017

Keto diets help tremendously in quality of life for folks (especially kids)) with epilepsy, PD, and MS.

It does nothing for cancer.

Just stop. This is very, very dangerous.

longship

(40,416 posts)
66. What is also dangerous is alternative medicine!
Sun Jul 23, 2017, 01:52 AM
Jul 2017

Like quacks like Joseph Mercola who promotes ketogenic diet as a cancer cure when it is no such fucking thing.

Read here:
https://www.democraticunderground.com/?com=view_post&forum=1002&pid=9359254

Jannod

(18 posts)
49. Keto for brain cancers
Fri Jul 21, 2017, 05:45 PM
Jul 2017

There are studies providing evidence that it can work by starving the cancer. A friend used a KD to treat recurrent glioma and five or so years later remains remains cancer free. This was part of a Johns Hopkins study that included patients with glioblastoma. Read the conclusion.

https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428

Jannod

(18 posts)
38. Keto works
Fri Jul 21, 2017, 12:33 AM
Jul 2017

I know someone who was treated at Johns Hopkins for a recurrence of glioma using only a keto diet. Tumor gone in a few months and remains cancer free. Here's the study: https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428

Docreed2003

(18,714 posts)
51. Not trying to nitpick...
Fri Jul 21, 2017, 06:21 PM
Jul 2017

But a glioma and a glioblastoma multiforme are vastly different.

Jannod

(18 posts)
56. KD used for glioma and glioblastoma. Read the study.
Fri Jul 21, 2017, 08:50 PM
Jul 2017

Read the study. Both were included. My friend had recurrent glioma so I wanted to be clear about that in regards to the outcome.

Jannod

(18 posts)
57. Skepticism is good but also with Pharma
Sat Jul 22, 2017, 02:49 PM
Jul 2017

Nothing wrong with a little skepticism. But if you read the study you'll see that the Hopkins team presents evidence that a KD can be effective with glioblastomas. Gliomas are slower growing but prognosis is still bad.

Jannod

(18 posts)
71. Glioblastoma v glioma
Tue Jul 25, 2017, 12:03 AM
Jul 2017

Glioma is the broader term with stage iv being glioblastoma.

From WebMD:
•Grade I gliomas are called pilocytic astrocytomas and are usually seen in children.
•Grade II tumors are called diffuse astrocytomas and are low grade.
•Grade III gliomas are called anaplastic astrocytoma. They're considered high grade.
•Grade IV glioblastoma are considered high grade.

My friend had a lower grade, it was caught early due to regular screenings, and is about half McCains age. So one would expect better prognosis. On the others hand, it was a recurrence.

Jannod

(18 posts)
73. Glioma v gluoblastoma
Wed Jul 26, 2017, 04:03 AM
Jul 2017

Then I misunderstood your comment about nitpicking. I understood you to say that glioblastoma and glioma were vastly different. One is a subset of the other.

Jannod

(18 posts)
58. More evidence for keto
Sat Jul 22, 2017, 03:00 PM
Jul 2017

More evidence from researchers at Boston College:

http://www.sciencedirect.com/science/article/pii/S0920121111002063

Summary
Malignant brain cancer persists as a major disease of morbidity and mortality. The failure to recognize brain cancer as a disease of energy metabolism has contributed in large part to the failure in management. As long as brain tumor cells have access to glucose and glutamine, the disease will progress. The current standard of care provides brain tumors with access to glucose and glutamine. The high fat low carbohydrate ketogenic diet (KD) will target glucose availability and possibly that of glutamine when administered in carefully restricted amounts to reduce total caloric intake and circulating levels of glucose. The restricted KD (RKD) targets major signaling pathways associated with glucose and glutamine metabolism including the IGF-1/PI3K/Akt/Hif pathway. The RKD is anti-angiogenic, anti-invasive, anti-inflammatory, and pro-apoptotic when evaluated in mice with malignant brain cancer. The therapeutic efficacy of the restricted KD can be enhanced when combined with drugs that also target glucose and glutamine. Therapeutic efficacy of the RKD was also seen against malignant gliomas in human case reports. Hence, the RKD can be an effective non-toxic therapeutic option to the current standard of care for inhibiting the growth and invasive properties of malignant brain cancer.

Warren DeMontague

(80,708 posts)
16. I wish Senator McCain well in his recovery.
Thu Jul 20, 2017, 02:56 AM
Jul 2017

I haven't always agreed with the man, but I respect his Patriotism and his service to our Country. And I hope he beats this.

misanthrope

(9,479 posts)
18. There are promising new options being researched
Thu Jul 20, 2017, 04:51 AM
Jul 2017

But glioblastoma is particularly nasty. Science journals were abuzz with the following study a few months ago.

https://www.democraticunderground.com/10029348296

Jannod

(18 posts)
39. Also Keto Diet
Fri Jul 21, 2017, 12:38 AM
Jul 2017

I know one of the people in the study who did only keto and was cancer free within four months and remains so today. Also remains on the keto diet.

https://academic.oup.com/nop/article/2/3/127/1036295/Glycemic-modulation-in-neuro-oncology-experience#33230428

samnsara

(18,767 posts)
26. my FIL died of this.. after they did the surgery he was actually worse..
Thu Jul 20, 2017, 10:18 AM
Jul 2017

..I think he passed about a yr after but it was a very rough year for the family. It was a steady mental decline. But this was 40 years ago and I am sure there have been advancements since then.

Gothmog

(179,363 posts)
27. It is unlikely that all of the tumor was removed which is why the survival rate is so low
Thu Jul 20, 2017, 10:23 AM
Jul 2017

Justice

(7,257 posts)
29. I know 2 adults and one child who survived glioblastoma
Thu Jul 20, 2017, 10:49 AM
Jul 2017


The first adult, male, first diagnosed in his 40s, has survived nearly 10 years from last growth of tumor. Treated at Memorial Sloan Kettering (New York) - he said his doctor reports he is making his own odds. He works from home at his own business - does pretty well, but has some side effects. Has been able to see his kids grow up and go to college.

The second adult, female, also diagnosed in her 40s, has survived nearly 5 years. Treated at Dana Farber (Boston). On clinical trials. Extremely bright woman, went to Ivy League school, big job etc. Now physically disabled, has had seizures and major problems with balance. Will never be able to work again. Has been able to see her kids grow up and go to college. I think younger child resents her for having cancer/because she is not normal.

The child was diagnosed at age 2. Now about 6 or 7. Has vision issues and other physical effects from treatments. Treated in Northeast at major hospital but also treatment plan was viewed/monitored by other doctors, including St. Jude.

No doubt these three people are fortunate to be alive, but not without some real complications. The tool cancer has taken on them and their families is horrible. All were fortunate to have great healthcare.

pnwmom

(110,254 posts)
36. Wow! An almost 10 year survivor.
Thu Jul 20, 2017, 07:37 PM
Jul 2017

The longest survival period among my friends was 3.5 years -- and we all felt very grateful and fortunate for that time. The others lasted 2 years or less.

And, yes, it takes a horrible toll on the patients and on their families.

Warren DeMontague

(80,708 posts)
34. I'll argue this crosses over into the realm of political discussion in a few areas:
Thu Jul 20, 2017, 07:30 PM
Jul 2017

(Aside from the arguments for universal, I would say Single Payer, health coverage, but those are obvious)

One, terminally ill people should have the right to a dignified, pain-free exit on their own terms. Their bodies don't belong to "God" or the Government, but to themselves. Period.

Two, we need to stop throwing medical marijuana users in prison.

Three, illnesses like this highlight the wrong-headedness of "crackdowns" on pain medication. In the ill-advised crusade to ensure that noone, anywhere, catches an unauthorized buzz, we are guaranteeing that pain patients will suffer from inadequate pain management, if we're not actually throwing them in prison with the pot smokers--- as we did to Richard Paey.

And what happens when we "crack down" on opioid prescribing? Addicts- and legitimate pain patients as well- simply move to the black market. We need a new, different approach.


Individuals should have full and total control over what happens to and what goes into their bodies, not the government. No one should suffer needlessly, in 2017. Terrible, probably-terminal diagnoses like Senator McCain's highlight this fact.

 

bathroommonkey76

(3,827 posts)
35. I know of a five men around me with the same diagnosis-
Thu Jul 20, 2017, 07:33 PM
Jul 2017

And all are in their 50s and 60s.

Wouldn't be surprised if cellphones are the reasons for this uptick in brain cancer- When someone says "rare" you'd think it was actually "rare"- reading through the comments on here shows that it definitely isn't "rare".

LeftyMom

(49,212 posts)
37. The obvious problem with your argument:
Thu Jul 20, 2017, 09:49 PM
Jul 2017

People who have no experience with it aren't posting.

If I start a thread about infected spider bites and everyone who responds has had one it doesn't mean the spider invasion has begun.

 

bathroommonkey76

(3,827 posts)
53. Doctors say it this is a "rare" cancer
Fri Jul 21, 2017, 07:23 PM
Jul 2017

adjective
(of an event, situation, or condition) not occurring very often.
"a rare genetic disorder"


When I think of a "rare" condition I think of ALS, Ebola, or some other disorder that would not affect those around my community- I have never known a person with ALS, or Ebola, so that to me is "rare".

The Velveteen Ocelot

(130,398 posts)
48. It's a terrible disease. I haven't liked McCain's political positions
Fri Jul 21, 2017, 11:28 AM
Jul 2017

or his choice of running mates, but he doesn't deserve this. Nobody does. The prospects for recovery are not good but I hope that at least he can live awhile longer without suffering.

A few months ago in my area there was an accident in which a bicyclist was hit and killed; the driver ran him down in broad daylight in good weather. When the police came and talked to the driver he seemed confused and addled, so they tested him for alcohol and drugs, but those tests came back negative. A few days later he was diagnosed with this same form of cancer. This is someone I knew from school, and had seen off and on at various events for years, and I was shocked at the news of the accident and that he was suspected of driving under the influence of drugs or alcohol because he was such a straight arrow. But it was the tumor that caused his erratic driving. It killed one man and will soon kill another.

longship

(40,416 posts)
62. The facts on ketogenic diets and cancer.
Sat Jul 22, 2017, 04:25 PM
Jul 2017

As I posted above, I am skeptical of this claim. Apparently, so are oncologists, like David Gorski.

Here's his summary of ketogenic diets.

Clearly, ketogenic diets are not ready for prime time as a treatment for cancer, either alone or in combination with conventional therapy. Unfortunately, that hasn’t stopped it from being touted by all manner of alternative cancer practitioners (i.e., quacks) and others as a cancer cure that “they” don’t want you to know about or saying things like, “…it’s nothing short of medical malpractice and negligence to fail to integrate this type of dietary strategy into a patient’s cancer treatment plan,” as Joe Mercola did. Dr. Seyfried himself has contributed to the hyperbole quite a bit as well. For example:

"These studies are all in combination with either radiation or chemotherapy. My preference is to start metabolic therapy with GBM (glioblastoma multiforme). This is a devastating type of brain cancer. Metabolic therapy with a restricted KD could be done with a few tumors where you know the conventional standard of care doesn’t work at all. You would choose those kinds of patients and do a clinical trial based on historical controls and see what the outcome would be and see if you could get some level of survival that would match or be better than the conventional standard of care."

Regular readers of SBM should know the problem with this sort of approach. No IRB worth its salt would approve such a trial because it would be ethically dubious, but, even worse, it would be ethically dubious and it wouldn’t really tell us anything unless those few patients either had near-miraculous responses or died very quickly. Anything else would simply tell us that the diet is probably doing no harm. More numbers would be needed, particularly if the comparison is to historical controls, to get even an inkling of whether there might be benefit. In that case, you might as well do a proper phase I/II clinical trial, which is what is happening.

(Snip links to current trials)

In other words, clinical data should be rolling in fairly soon, and that’s a good thing. In the meantime Dr. Seyfried and other advocates who so passionately believe that ketogenic diets will greatly help patients with brain cancer do no one any favors by claiming unequivocally that cancer is a metabolic disease and saying that ketogenic diets are more beneficial than chemotherapy for patients with brain tumors.


Much, much more at link.

Ketogenic diets for cancer -- hype vs science (At Science-Based Medicine Blog)

Apparently my skepticism is well placed. The studies cited in this thread are at best preliminary and apparently unblinded. (Not sure how one would blind somebody's diet, however.) As Dr. Gorski says, there are some stage I/II clinical trials in the works. So we may know the facts soon enough. And in conjunction with standard treatment, the diet at least seems to do no harm, although a few patients in the pilot trials seemingly could not tolerate it and dropped out, which should be a bit worrisome to folks promoting it. Then, there's the issue that a main proponent of ketogenic diets for cancer has associated with the utter quack Joseph Mercola.

My best to you all.

Nevernose

(13,081 posts)
70. "What treatments come next?"
Mon Jul 24, 2017, 11:09 PM
Jul 2017

Whatever treatments his insurance company will pay for, or whatever his billionaire wife will pay for.

After he votes tomorrow, there will be a whole lot fewer people with options for further treatments.

Latest Discussions»General Discussion»The problem with glioblas...