In August 2012, I was diagnosed with a two cm, grade two mixed cell type oligoastrocytoma, located in my left parietal lobe, very near the motor cortex. I had originally gone in to see my GP in January 2012, because for about 18 months I’d been experiencing “episodes” of motor control loss on my right side. These episodes lasted anywhere from one to three minutes, and were characterised by a loss of motor control, first in my right arm and hand, followed by a burning nervy sensation down my back and into my right buttock, and down my right leg, which would also become clumsy and dull. Once the episode passed, I would have no after effects.
I first experienced this in the spring of 2011, getting out of my car at a greenhouse where I’d gone to pick up some summer plants. I had never experienced any comparable sensation, and thought it was strange, but didn’t consider it further until it happened again about two months later. About a month after that, the third time it happened, I started journaling it, making note of what I was doing, what it felt like, etc. It was occurring about once a month when I finally went to my GP, knowing I’d need a referral to a neurologist, as even my limited expertise in biology and neuroscience was enough to tell me that the way the episode progressed, it was something central nervous system related. I feared something like MS, and for the six months it took to get an MRI, I actually joked about my “brain tumour”.
On August 14, 2012, my neurologist called me at work and told me that my MRI showed a glioma and that I should go to emergency at my local hospital, because the neurosurgeon he wanted to get me in to see was on call that day. About three weeks later I had a surgical biopsy, and a month later they confirmed the staging and grading of the tumour. I saw chemical and radiation oncologists, who both agreed with my neurosurgeon that a “watchful waiting” approach would be best, as long as the seizures I’d been experiencing could be controlled through medication. Surgical removal, chemotherapy and radiation therapy have were reserved in the arsenal for a time when there may be changes or advancement of the tumour.
In March 2013 I started a ketogenic diet, high in fat and low in carbohydrates, and cut out all refined sugar from my diet. In May 2015 my MRI showed progression of my tumour, and on September 9 I had an awake craniotomy to remove the tumour. After that, I had six weeks of combined radiation and chemotherapy treatments, followed by six months of chemo. Biopsy of the removed tissue confirmed that the tumour had indeed progressed from a grade two to three glioma. I maintained my ketogenic diet throughout treatment. Today, eighteen months after surgery, I am happy to say I am feeling terrific, with no lasting aftereffects of surgery or treatment. My MRI scans show no tumour remains. I will continue to have scans every six months to monitor for recurrence. I am still eating keto.
greymadder 
[…] Health History […]
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My husband has had an astrocytoma for over 20 yrs. He had brain surgery in 1989 and that stopped his seizures! The tumor has slowly grown somebin left temporal lobe and the ventricle. One dr. said it’s in the parietal lobe. They are talking about doing a surgical biopsy to see if it’s become a higher grade. I’m quite nervous about that. He is 67 now and not in the best shape. I wish you the best!
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We live in Athens, Greece. My wife Lily (age 69) was diagnosed in April 2013 with small (2cm) glioblastoma grade 4. She had it removed and had the usual protocol of radio+chemo therapy. Because the prognosis for her decease is very poor (12-18 months) we decided to look for a different treatment than the standard ones, which could give us some hope. We read about Dr Seyfried’s latest studies and found a specialist dr. neurologist in Greece who is implementing the RND diet for kids’ epilepsy. She started the diet in Nov 2013 and she is very well, all MRI’s so far are clean.
We are facing some practical problems which mainly have to do with measuring the glucose and the ketones. All meters in the market are admitting that their accuracy is +/- 20%, which is far too big for our purpose.
Can I ask you: Have you faced this problem or anyone you know and what is the solution?
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Hi, Thomas. Thank you for reading my blog. I am sorry to hear of your wife’s diagnosis, but I am really very inspired by her story and the good results she’s seen using this diet. It’s amazing that you were able to connect with a neurologist who could help you implement the diet, I am envious! I can relate to your issues with measurements, I have struggled with wondering whether I am in the optimal “nutritional ketosis” zone described in Dr. Seyfried’s work. My personal experience is that measurements can turn into a stressful experience where I become a slave to a blood meter and am continually distracted in daily living (or trying to sleep at night!) with worries about whether the meter is accurate, why my number was this today, but it was that yesterday, what did I do differently???? I am sure you can relate! I don’t know the answer. For me, when I feel like that, I try to gain some perspective and step back to what I consider the first principles of the whole thing – I am doing this to maintain health, not to add stress, so as long as I eat the best I can and don’t neglect rest, exercise, the joys of my family and hobbies, then I try to release worry about the specifics of numbers and meters. But I still keep an eye open for advice, so please share anything you find out! I wish you the best.
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Hi – I was referred to your blog by a commenter on Mark’s Daily Apple website. I am so pleased to read it – someone with the courage (and skill) to write about this topic from a personal point of view.
I was diagnosed with a 2 cm brain tumor on June 12th (just 5 weeks ago – seems like the longest 5 weeks of my life). The days have been very black since then. (I don’t remember the tumor type, and haven’t yet found the courage to get his report and re-read it. I do remember it is near the back of my head on the right side).
My wife and I had announced our retirement just the week before the diagnosis. We were going to retire on Aug 1, but the need for insurance has changed all that. Of course, this has changed everything.
Anyway, I’m not writing to tell my story, but to thank you for sharing yours. It is encouraging to me to hear from someone who has found strength to move ahead, despite such a setback. I’m not there yet, i.e. I guess I’m still in a bit of a daze over it all. But reading your blog gives me hope there is something I can do, rather than just let fate have its way.
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John, thank you for your comment, and for reading. I can actually viscerally connect to the way you are feeling right now, it takes me right back to the same experiences. I wish you the best in what is ahead. As a friend told me, simply, take care and take heart. I am touched and pleased that you found some hope in my words, it makes it worth it a thousand times over.
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Hello dear, my name is Luana and I am being treated for breast cancer in Brazil. I heard about your blog when seeking information on anti-cancer diets. I read about your symptoms and I was intrigued. Have you ever heard of medical marijuana? Here in Brazil the use is prohibited, but if possible in your country, I believe it would be a good alternative to improve their quality of life. Good luck! Hugs.
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Hi, Luana, thank you for reading and for your comments. Yes, in Canada we have a medical marijuana program, it is available from govt approved growers with a prescription. A lot of people use it illegally as well of course! I don’t have pain or other symptoms that it is usually prescribed for, and am not undergoing chemo either, so haven’t been a candidate. There is also a lot of research going on right now into general anti-cancer properties of cannabinoids, which is interesting. I wish you the best!
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Hi Alix,
I commend you on your blog and your brave journey with KD and cancer. I have been using a LCHF diet to manage my own T2DM for over a decade and I use it in my practice with patients who are overweight, pre-diabetic or diabetic. I am familiar with some of the cancer research in this area and recommend that my cancer patients consider KD. I know Eugene Fine and have attended lectures by Thomas Seyfried, both of whose work I find compelling. Good luck with all of this and I shall follow your blog to see how you are doing. BTW – I admire anyone who can maintain a blog. I neglect mine terribly.
All the best,
Jay Wortman MD
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Dr. Wortman, thanks very much for reading. The universe really is circular, I was just reading your expert contributions in Keto Clarity. I am always inspired to connect with medical and nutrition professionals who are working to help patients find this kind of information!
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HI there, I was diagnosed with a low grade glioma on July 3 of this year. I live in Alberta and I am feeling frustrated that I am still waiting to have my biopsy done. My surgery is booked Oct 9, three months after my initial diagnosis. I am just wondering what kind of wait times people in similar situations are looking at? I have remained quite positive up to this point, just frustrated with the system. Woulds love to hear comments. Cheers Janet
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Hi, Janet, I completely understand where you’re coming from! I saw my GP because of seizures in January 2012, didn’t see a neurologist until April, had my initial MRI scans in July 2012, received a diagnosis of an unknown glioma based only on imaging in mid-August, had my biopsy at the end of that month, and didn’t finally receive back full information on pathology and genotyping of the tumour until October 2012. So, I’d say that I was extremely frustrated with the whole process of referrals and waiting for the scan, although the timing between the neurologist seeing the glioma on August 14, referring me to a neurosurgeon and getting my biopsy only took two weeks, so that was excellent from my perspective. But then waiting for the results of the biopsy was just terrible. It does sound like your waiting time for biopsy has been long, I know what you’re going through. I’d be interested in other readers’ responses on waiting times in other regions and in the US, too.
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Janet and Alix –
I am so sorry to read of your scheduling and treatment delays. Ugh
Unfortunately, we in the U.S. will be facing this same issue soon with “Obamacare.” At this time our family is incredibly fortunate that my husband’s company has kept the private health coverage that we have used for the past 25 years. So we are not dealing with gov’t run healthcare … yet.
I was diagnosed with ovarian cysts on March 20th, 2014 and had surgery scheduled for March 28th. OB/GYN got the blood work back March 22nd and said the CA 125# indicated I needed surgery by a Gynecologist Oncologist. Got a referral and had surgery April 1.
I scheduled 4 opinions within the next 4 weeks and opted to go to Cancer Treatment Centers of America, just outside Chicago, for treatment of stage 3c ovarian cancer.
If there is anything to love about cancer, it is this hospital!
Case in point:
1 – Before treatment began, the oncologist wanted a biopsy of a lump that had developed. The biopsy was scheduled around my personal plans and performed 1 week later; results returned the next day.
2 – Last week my first post-chemo CT scan was scheduled. Again, results released one day later. There was an indication that a PET scan was in order; they squeezed me in that same day and the nurse called me with the results that afternoon. This quick turn-around is due to the fact that CTCA conducts their business in-house and they are free to schedule as needed.
Believe me, this will NOT be the case once Obamacare is forced on the rest of the nation. We are already seeing the results of gov’t run healthcare, and none of it is good.
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On Dec 31st of 2013 a golf ball sized grade 4 glioma was successfully removed from my right parietal lobe. After healing for a month, I received 30 radiation treatments and 42 days of temazolamide, the standard post-surgical treatment. The first post-treatment MRI was inconclusive, so I continued for 2 months with maintenance temazolamide (5 days on/23 days off). During this period, after reading Ellen Devis’ book, I began a food plan that I would loosely define as an induction phase ketogenic diet. My wife has been cooking ketogenically for me ever since with the assistance of a personal chef who comes every other week to prepare ketognic entrees vacuum sealed in individual portrions. The chef works under the supervision of Lee Renda, the RD at the Barrow Neurooncology unit in Phoenix, Arizona. With Lee’s guidance I’ve been faithfully measuring glucose and ketones almost every day before dinner and many days, my ratios are well below 1.0 – glucose reading in the 60s-70s and ketones as high as 6+. The footnote to my story is that the June MRI showed a multifocal recurrence in the margin of the tumor bed, a clear affirmation that standard therapy did not work. Thus, 14 weeks ago I began biweekly infusions of Avastin, a targeted biological therapy that works to shut down the new blood vessels that support tumor growth, known as anti-angiogenesis. Fortunately, the end of July MRI showed that the recurrence had been shrunk by 85%. While the doctors attribute the positive outcome to the Avasitn, there’s no doubt living my life in a constant state of nutritional ketosis has had an equally anti-angiogenic effect on the recurrence. Thus, I continue to eat as if my life depends on it and my wife and I are cautiously optimistic that the October 2nd MRI will show further shrinkage of the recurrence – maybe even total elimination.
Frank
Chester, NJ
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Hi, Frank, thank you so much for reading and for sharing your story. It really is inspiring to me, I’m always so pleased to hear about people who’ve been able to find local doctors or dietitians who can help work with them on this approach! I think there are far too many areas where these resources just aren’t available. I really admire your spirit, and look forward to hearing more good news from you!!
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Hi Alix.
First of all thank you for your blog.. it is comforting to see an example of someone going that road with success. I was diagnosed with 2 head tumors a few weeks ago. One acustic neurinoma, approximately 2,5mm and one small Glomus Jugulare, both on the left side. I am a 30 years old man, never had bad habits such drinking or smoking excessively, and always liked a lot to do sports. I have been placed into a waiting and watch program, as the tumors are too small and do not justify, at this moment the risks of the operation. Well, I can wait and watch, no problem with that, but my personal nature is of a fighter, therefore I can’t live with the fact that I am doing nothing about it.
I consulted a Naturalist Doctor in Germany, Dr. med Bodo Khöler. He prescribed be a ketogenic diet, and several medicines that will improve my immune/digestive system. The idea is to make the tumors weaker, and empower my body to fight back the tumor cells. I am now on my 1,5 week of the diet. Still fell a bit weak and without energy, but I am very positive it will come good in the near future. I wish you all folks here success on this “road”. Remember a positive atitute can and will make the difference on the case.
Alix,would you have suggestions of meals and foods, to make it a bit more diversified?
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Hi, Ayres, thank you for reading. Your situation sounds similar to mine, and I think that folks like us on a “watch and wait” program are likely the ones that can perhaps benefit most from nutritional therapies. We’re already healthy, and the goal is really just to slow or stave off progression, so I think this is an ideal approach. I felt not so great for the first few weeks as well, but it did pass. Some of my favourite staple foods include things that you read about a lot, I suppose, avocados, macadamia nuts, eggs in butter, coffee with MCT oil, butter and cream, as well as fat bombs – you can google for these, there are tons of recipes, mostly all forms of cream cheese or other fats with something like cocoa or nut butters, frozen in bite sized portions to pop in your mouth when you feel like a boost or a treat. I also love to drink club soda with vanilla flavoured stevia, full fat cream and MCT oil over lots of ice – I call it a Keto Cream Soda! KetoDietApp has lots of great recipes, so do other sites listed in my resources section on this blog. Best of luck, please keep in touch and let me know how you are doing. You can join our Facebook group and share updates there if you wish. Best, Alix.
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Hi Alix! thank you so much for your reply. Yeah, indeed there are tons of suggestions on the web, maybe a bit too much, so I rather get advices from someone experiencing the situation on real time. I will update some of the delicious menus, my wife is getting specialised on Zero Carbs, or very low carbs. I will look for the facebook page. But, by the way, could you update us how is your clinical situation? When and what were the results of your last MRI?
Cheers.
Ayres
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My last MRI was in October, and showed no change in the tumour. Best to you!
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Hi,
I just wanted to post and ask a question. Over 4 years ago (2010)I was diagnosed with grade 2 Astocytoma. I had no follow up treatment in terms of chemo or radiation. I had a re accurance back in June of 2014 and had surgery this February of 2015. The tumor has now been upgraded to an early grade 3 Asctrocytoma. My medical team here is optimistic as my markers are favorable and the tumor was in a location where it’s still operable. Im very positive as well as I blame this re accurance on a terrible diet, near concerning daily alcohol habits, and a bad life style. Although athletically active, the drinking and eating did not help my prognosis. Either way, I have had a difficult time finding a diatician to assist in my area. I have started a clean low carb diet 6 weeks ago but would like some professional help in terms of managment and so forth. Is there an association or a group that you can recommend locally? Please email me on my personal account t if possible or respond.
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Hi, Darius, i apologize for the delay in response. I know two nutritionists who offer professional help online and via distance or telephone meetings with this diet for cancer. Look up Patricia Daly at patriciadaly.com and Miriam Kalamian at dietarytherapies.com. I wish you the best!
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Alix, this guy fixed his brain cancer and apparently even has scar tissue healing by taking keto one step further. See link:
Best wishes. Thanks for your blog. Inspirational!
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Your blog is a wonderful resource. Do you think that perhaps you had been on the keto diet sooner for instance without any symptoms that the tumor might not have never grown? I read up on the prodrome testing company and find the concept fascinating. I have 2 diabetic parents and rather than wait until I got a diagnosis started to test glucose aggressively, adopt keto diet and use IM to stay around 1.5 – 2.5 ketosis and glucose in 70’s – 80’s. Just wondering if there is research that indicates for people without a cancer diagnosis how much of this keto lifestyles is enough to keep cancer at bay.
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