Brain tumors

[saadbell]

Just a quick note about my condition, I was dx with MS about 20 years ago, had the normal signs numbness left side, the whole nine yards. Put on interferon and a thousand other drugs I went into remission, or I thought I was in remission. I was living in Africa with my husband and daughter, I go home and always have a check up, every year and I told my primary doc about strange staring spells, he said it was nothing. It wasn't until I went out cold on the floor did I realize something was really wrong. I came home and being a vet I went to this new VA clinic and within a month the bad news came my brain lesion that is located somewhere in the central cortex is the problem. They started me on gabapentin 400mg three capsules three times a day and then they started me also on levetiracetam 500mgOne tablet by mouth twice a day. Than since I was still having seizures they changed the keprra to dilitan, and all hell brook lose. fft: I lost my mind completely my first level was just 22 but within a week it went up to 44, now they tried it again I hate it and even though he said my level was normal, I was really sick, so back to keppra, now tonight I start my new stuff to get off the keprra this one is lacosamide 50mg starting out for one week two tablets and taper off the levetiracetam. I just feel so anxious and like someone has shot me with some kind of bad speed or acid, this is the worst I have ever gone though, to be honest I would rather have seizures than feel like this. At the moment I feel insane, I am also on hcitalopram htdrobromide 40 mg two a night and 1/2 in the evening for anxiety than I read the side effects, SEIZURES, you got to be kidding me my tongue still hurts from my last dance. So now I am afraid to do any more seizure meds, but I know I have to get this combination correct. Nice to be here with people who understand I also have to do interferon, and when I did my first shot I had a grand mal, so I am not taking that until I am stable, the chemo just is too much to handle right now.

 

[jyearta]

Saabell, 1st. I want to welcome you here.
2nd. and most important I want you to know that I hate to hear what you are going though. I know these words don't take away all of your problems, BUT please know that you are in a good forum. The people here are caring and understanding, cause we are all going through something, be it seizures and side effects of medic.
I hope you find comfort in knowing you are not along.

 

[saadbell]

Thanks for reply, good to be here, I am learning so much, all I can say is wow I am not alone in this fight. Kepp the good fight my friends.

 

[Dutch mom]

Welcome!

Thought you might be interested to read about how a ketogenic diet not only can reduce epilepsy but it can stop certain brain tumors which use glucose to grow.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819381/

In 1995, a case report by Dr. Nebeling, et al. of two children with astrocytomas was published. These children responded to a low-carbohydrate diet and their tumors did not progress. The possible theory is that brain tumor cells are unable to function when given ketones as a fuel source — they must have glucose or die. Researchers have replicated these results in a mouse model and determined that calorie restriction may also be important. Low carbohydrate diets have also shown encouraging results in an animal model of prostate and gastric cancer. Studies are underway at several centers to my personal knowledge, including Wurzberg, Germany and New York City, to study low carbohydrate diets for different varieties of cancer.

http://www.epilepsy.com/epilepsy/keto_news_aug08

The first clinical trial testing of a ketogenic diet was conducted at the Würzburg hospital in Germany in 2007. The German hospital continues to recommend the diet for cancer patients with advanced cancer. In the initial trial, some patients died before the end of the trial, others went off the diet because of the prohibition of sweets. But all five patients who lasted till the end of the diet had positive outcomes. The cancer growth had either slowed down or stopped completely. In a couple of patients, the tumors shrunk. The doctors at the Würzburg hospital continue to have very positive results in the treatment of advanced cancer.


Read more: http://www.livestrong.com/article/396625-ketogenic-diet-brain-cancer/#ixzz1XsTLs5J5

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[epileric]

Interesting that you should post that Dutch Mom. I was just reading a bunch of doctors discussing the ketogenic diet with regards to tumours. Skip the story on this link and go to the comments below starting with Geoff's post at 12:31 PM. Harriet Hall explains very well why the diet shouldn't work on human tumours. Also remember that the study on the link was done just on mice which makes it very preliminary.

http://www.sciencebasedmedicine.org/index.php/chemotherapy-doesnt-work/

However, he still hasn’t managed to address one amazingly fundamental point. That is the concept of blood glucose, as Dr. Hall raised above. Even if you are ketogenic, your blood glucose is still relatively normal. He seems to think that because you become insulin resistant, to shunt glucose to the brain (which is correct) that somehow means that all glucose is shunted away from cancer cells specifically. Yet there is absolutely no reason to assume this. And plenty of data that show it isn’t true. He also completely neglects the concept of gluconeogenesis seeming to think that the only way our bodies can get glucose is either from diet or glycogen stores. Never mind glucogenic amino acids. Never mind the fact that the brain can only survive on a maximum of about 50% ketone bodies and the rest must be glucose.

 

[epileric]

Also here is a little experiment that Dr. Nebelings did previously on humans but only 2 humans. That means that the results are very prelminary & do not replace normal treatment as was stated.

CONCLUSION:

While this diet does not replace conventional antineoplastic treatments, these preliminary results suggest a potential for clinical application which merits further research.

Effects of a ketogenic diet on tumor metabolism and nutritional status in pediatric oncology patients: two case reports.

I feel that it's definitely worth doing more research on this diet but so far everything seems to be very preliminary.

 

[Dutch mom]

In our hospital, the Erasmus (University) Acedemic Medical Center in Rotterdam (Netherlands) they are (experimental) treating adult brain tumor patiënts with the keto diet. My son's dietist is keeping me updated.

Here's a part of my mail contact with Mimi, Raffi's mom. I met her on the keto Yahoo group several years ago. Her kid was treated succesfully and she gave permission to spread her words.

Raffi, who was diagnosed with a massive, persistent, infiltrated optic glioma had been thru the mill: 14 mos of chemo didn't stop it. We tried a different chemo. Still no response. Against our former neuro-onc's advice, we then opted for surgical "debulking", a very risky & aggressive procedure (first surgery in Oct, second in Nov) but thankfully successful in Dr. Wisoff's perfect hands. But the tumor never missed a beat. In January, Raffi started a clinical trial. He was pulled 9 weeks later as the tumor continued to "progress". His new neuro-onc said we now had "one bullet left in the chamber, and we'd better use it wisely". Like our old doc, he wanted to step up the toxicity of the chemo as a last-ditch effort to stall the tumor until Raffi was older. He saw radiation as inevitable. Not very reassuring since we'd already been told that he wasn't a good candidate (of course there were those who'd be willing to try...)

Then, just as Raffi was about to be thrown to the wolves, I found, by accident, a research paper involving an animal study at Boston College. In short, the study involved a group of mice with induced brain tumors who were put on a ketogenic diet. They were divided between "unrestricted" & "restricted" Ketocal. A control group were fed unrestricted mouse chow. There was a 65% response in the anaplastic astrocytoma tumors of the calorie restricted Ketocal group, and a lesser but still impressive response in mice with induced gliomas.
I contacted the major researcher, Dr.Thomas Seyfried. He sent me other papers, and put me in contact with another researcher, Linda Nebeling. She had published a case study in 1995 of 2 pediatric patients who were MUCH more compromised than my son. Both showed a positve response. One is still alive, some 12 years after the study!

Next, I bought The Ketogenic Diet, 4th edition, by the group at Johns Hopkins. For those who haven't yet seen this lastest edition, there is "speculation" that the ketogenic diet could "starve" glucose-hungry brain tumors while continuing to provide energy for normal brain tissue in the form of ketones.

We also spoke with Dr. Eric Bouffet, a Canadian pediatric brain tumor specialist who has been studying a chemo drug (Vinblastine) that is MUCH less toxic with no known "late effects". He shares our concerns with quality of life issues,

At this point, my husband & I decided to devote the next 3 months to our own private "clinical trial" by adding the ketogenic diet to the Vinblastine with the hope that the synergy would produce a better outcome than either would on their own (that was one of the drugs that had not worked for him last year). Raffi's MRI scan was on 6/29. The tumor is shrinking! We sent the scans to the surgeon & the Canadian doc. Unless one of them sees something our local guy didn't, we intend to extend our "trial" for another 3 months. Raffi has no problems producing ketones, and he doesn't have epilepsy, so our primary focus is on glucose control. We're on our own here. We know there are at least a couple of other brain tumor families that are attempting something similar, but we have yet to connect with anyone. There doesn't appear to be any single professional willing to take us on- many are rooting for us, but can't chance the possibility of a lawsuit if things went poorly- can't blame them for being gunshy- but that's left me on my own, reading & re-reading the Keto book, asking questions from the Yahoo Keto Parent group (thank you guys), and surfing the web whenever I wasn't weighing, measuring, calculating, monitoring, or just being a Wife & Mom! Now that we know it works, we're ACTIVELY searching for some help from a dietician who is well-versed in the diet, but who can help us tweak it for our particular purposes. We MAY be close...

Well that was a bit more than I intended! PLEASE feel free to copy/duplicate/forward/re-post/tell-your-friends/whatever it takes to get the word out that maybe- just maybe- something as simple & inexpensive as a DIET might be effective in halting tumor progression when combined with even a primitive "old" chemo drug, let alone what it may do when combined with fancy proton beam machines (not us), image-guided surgery (thank you Dr. Wisoff for buying us some time...), and last & least, the barely/rarely effective hand-me-down drugs therapies (ARGHH!).

Keep up the good work!

 

[Dutch mom]

Dr. Seyfried has published this article, this is the doctor who was guiding Mimi, Raffi's mom.

http://www.cancerjournal.net/articl...me=5;issue=9;spage=7;epage=15;aulast=Seyfried

 

[epileric]

In our hospital, the Erasmus (University) Acedemic Medical Center in Rotterdam (Netherlands) they are (experimental) treating adult brain tumor patiënts with the keto diet. My son's dietist is keeping me updated.

Here's a part of my mail contact with Mimi, Raffi's mom. I met her on the keto Yahoo group several years ago. Her kid was treated succesfully and she gave permission to spread her words.

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Just saying that because it is experimental nobody should stop their medications or neglect other treatment to try this. It is really cool that it might help tumors.

Thanks DM.

 

[Dutch mom]

Dr. Hall wrote:

Even if you are ketogenic, your blood glucose is still relatively normal

.

This is not true.
Children on the ketogenic diet usually do have blood sugars on the low range. Morning blood glucosis (before breakfast) 3.0 and evening blood glucosis (after dinner) 3.6-4.2 are goals on the keto diet. Blood ketones have to be 4+. When the diet has no or not enough effect on the seizures, the diet can be fine tuned on blood glucose levels. Children on the diet with normal blood glucose measurements tend to react less on the keto diet.

Source: Stafstrom et al. ,1994 (= the 'keto bible')

"(...) However, these investigators found out that simply restricting calories had as robust an effect of seizure suppresion as did the KD. They postulated that calorie restriction may underlie the mechanism of the KD, either from ketosis or hypoglycemia. The authors believe that the mechanism of seizure suppresion is probably related to glucose dysregulation. Most likely, a combination of the two factors is operative, e.g., the brain metabolizes ketones better under conditions of reduced glucose.
Reliable data on caloric restriction in humans with epilepsy is lacking. Systemic glucose levels usually range from 60 to 120 mg/dL, with wide range of "normal". The relationship between seizure threshold and plasma glucose concentration is complex, and elevated glucose concentrations can be proconvulsant. Individuals on the KD tend to run blood glucose levels on the lower end of normal, but rarely are they hypoglycemic. Therefore, a metabolic adaptation occurs in response to the diet to maintain relative euglycemia."

Carrie Loughran (keto dietitian) reports a trend of parents reporting Glucose 3-3.6 mmol/l associated with greater seizure control.

In her experience with fine tuning she suggests you look at two glucose readings

1. Morning (fasting) glucose which should be about a 3 (any less and more carbs/cals needed). To fine tune this adjust the total calories.

2. Evening (post meals) glucose which should be 3.6 or 4.2 for an active kid. To adjust this she suggests tweaking the ratio.

 

[Dutch mom]

Just saying that because it is experimental nobody should stop their medications or neglect other treatment to try this. It is really cool that it might help tumors.

Thanks DM.

No one, with epilepsy or brain tumors, should EVER start a ketogenic diet without a neurologist prescribing it and specialistic dietitian guiding you.

We are succesfully doing this diet for >7 years now with my son and we still have a dietistian guiding him and a pediatrician doing all kind of check ups every six months.
This diet CAN have several side effects and needs to be monitored closely and properly!

Mimi did try it herself and good luck for Raffi she did it succesfully. She had no other options, no one would help her (this was in 2006) and her son was going to die.
When the tumor did stop growing suddenly a doctor was willing to help her and to start a study.
She was a pioneer and has opened the way to more research.

 

[epileric]

Dr. Hall wrote: .

This is not true.
Children on the ketogenic diet usually do have blood sugars on the low range.

Dr. Hall may not be accurate that blood sugar remains the same but from what I've read ketosis is accompanied by glucogenesis.

Ketosis, which is accompanied by gluconeogenesis (the creation of glucose de novo from pyruvate), is the specific state with which clinicians are concerned.

http://en.wikipedia.org/wiki/Ketosis

I don't understand how someones blood sugar drops while glucose is being produced, even if it is from non-carbohydrates?

 

[Dutch mom]

Gluceogenesis is a state one needs to prevent on a ketogenic diet. It occurs when a child is having too less or too many calories or when he/she is ill or stressed (including when having seizures!), all circumstances in which the body starts to burn muscle tissue for energy.

When glucose goes above a certain level, the body/brain will preferentially use it as nourishment/fuel in preference to ketones, however deep the level of ketosis is at the time. If using ketones rather than glucose is helping with seizure control, then every time the situation occurs where the glucose goes too high for the ketones to be used as the first fuel alternative, breakthrough seizures can occur.

Higher than optimum glucose levels can occur on keto in times of illness/stress (including seizure activity), or when the ratio or calories are too high, or conversely, when calories are too low. This is because the body will go searching for nourishment from muscle tissue (gluceogenesis) which is a glucose producing process.

 

[travel bug]

Hello Saadbell,

I’m sorry you’re going through so much with your AED plus all the other meds you are on. A blood level of 44 on Dilantin? That’s horrible! When I was on Dilantin I got up to a 22 and felt like my head was going to explode! I feel awful enough just being on Keppra now, and a fairly low dose at that.

I read your post several times and I’m a little confused, so please forgive me if my response is off base. You mention brain tumors, but say that you were diagnosed with MS. Is that a type of brain tumor or do you mean Multiple Sclerosis? You say that you were treated with interferon in the past and went into remission, but recently discovered your lesion was the cause of your new seizure activity. Please forgive me if I’m misunderstanding your post, but is it possible that you are taking the general term “lesion” for the more specific term “tumor”? Lesions can sometimes refer to tumors, but often they refer to abnormalities, plaques, or scaring caused by strokes or by Multiple Sclerosis or other conditions or accidents. I have a brain tumor and spend quite a bit of time on brain tumor sites and I can’t think of any tumor type that would be abbreviated MS, nor are brain tumors treated with interferon, not usually anyway. Interferon is used to treat some sorts of cancer, but not brain tumors; the most commonly used chemotherapy drug for bt’s nowadays is Temodar. Interferon is, however, sometimes used to treat Multiple Sclerosis. I only bring this up because if I’m right (and I might be waaay off) and you are mistaking “lesion” for “tumor” you might be worrying more than you need to. Not that Multiple Sclerosis isn’t anything to worry about. My dad has MS and I know how serious it is. But I didn’t want you to think you have a brain tumor on top of MS if that's not the case. So anyway, if I’m right –and again, I apologize if I’m wrong – I would suggest talking to your doctors to make absolutely sure what you are dealing with.

Take care and keep in touch!

 

[travel bug]

Hi Dutch mom and Eric

Lots of interesting articles; I have a lot of reading to do. I've seen some mention of these studies before, but you've introduced lots of other good info. It sounds promising at least in some cases. Every little bit learned helps whether it leads directly to new courses or treatment or not.

 

[saadbell]

My MS is in my brain, which is rare, mostly it shows itself in the spine. When it came back my now neuro didn't even do a spinal tap or even an MRI on my spine, he just took one look at the MRI of my brain and told me we were in trouble. Yes you can have different forms of lesions, my neuro told me basically I have incurable and inoperable, and it is growing, yes they do use interferon as a chemo

Interferons (IFNs) are proteins made and released by host cells in response to the presence of pathogens—such as viruses, bacteria, or parasites—or tumor cells. They allow communication between cells to trigger the protective defenses of the immune system that eradicate pathogens or tumors.

It is used to help MS, but it does shrink tumors, if you can get it in you, is your dad on interferon, my neuro wants this thing to shrink, but right now I am too sick to even think of giving a shot to myself, I call it poison in a shot. I am on three seizure drugs, the worst I do have to say was Dilitan :tdown:that made me feel completely crazy, I even had a night that I didn't sleep or eat or drink for 24 hours, I didn't even know they had drugs like that out there, now I know that dilitan has helped people, when I was growing up there was a friend of mine who took dilitan and she had no problems, so I had no idea that some of us are sensitive to this. Hope there are no mistakes in my writing, I had a night from hell last night, I got up sick and threw up all night, and no I had not did a shot of interferon. But I did get a call from the docs nurse, my CBC came back my white blood level is in the danger zone,and now they are afraid I will bleed out. I first went on the MS forums and asked if there is anyone there that has seizure, I got 0 replies. The neuro told me I have a rare form of MS, this is not something many see that have MS. What kind of brain tumor do you have? Can they operate and try to get it, or is that out of the question, sorry to see anyone going through this, I feel awful these days, I am hoping to go a whole month without a seizure, right now it is usually every two weeks the longest in a year is three weeks. Also I don't know a lot about epilepsy, but I thought you got one kind of seizure and that was it, I have had all the seizure listed. Are you seizure free or do you struggle also with seizures and getting the meds right. When you described dilitan, you are right, now I know what crazy is. Wishing everyone seizure free.

 

[travel bug]

Hi Saadbell,

I get what you're saying now. Sorry for the misunderstanding.

I'm sorry you are having such difficulties. As if it isn't bad enough to have MS, to have this very rare form complete with all the complications of seizures, AED's and chemo must be especially hard. AT least with more common forms there are more established treatment protocols and support from others going through the same thing.

My dad is very stubborn and won't try any treatment. He reads about the side effects - long and short term - and doesn't think that he would get enough benefit from the treatments, most of which are for people who are newly diagnosed, to make it worth while.

I've got a low-grade oligodendroglioma next to my left motor cortex which made surgery tricky, but not impossible. My surgeon was able to remove some, but it was too invasive to remove the whole thing. Fortunately, I don't have big seizures anymore, though I still have small, vague ones and auras. I've been bothered by the side-effects of the Keppra I'm on, but I guess I should count myself lucky compared to what you're going through. I did a year of chemotherapy (Temodar) and it played havoc with my blood counts too. I had to have a Neulasta injection after every cycle to keep my white cell count up. They postponed treatment a couple of times because of low platelet counts, but they never got so low that they worried about bleeding.

I really hope you are doing better now than when you wrote your last post! I'll be thinking about you, sending you positive vibes. Write when you feel up to it and let us know how you're doing!

All the best.

 

[saadbell]

I am so sorry you are dealing with a whole lot on your plate, like yourself I am going in today because of my blood counts. Now I am a tad OCD this is my day to clean the house, yes I do that every other day, but what is more important to me blood counts, or housework, housework hands down. lol I have started to feel better when my blood count is off the chain, but I started to run again, not 5 miles but I was doing 2 1/2 and that makes me happy, but with all my doc appts it screws with my OCD routine. I can understand the keprra side effects, for me it is bad bad temper, now I don't go off the chain and hit and yell, it just makes me short temper and I feel rage inside. Now dilitan just takes me completely out of it Are you only on keprra at the time, and what kind of side effects are you feeling? How is your dad doing, can he still walk or does he have any weakness? Well I am hoping you good health and happy vibes.

 

[travel bug]

I hope all your blood counts were good. It's frustrating when one goes back to where it should be, but one of the others tanks.fft: But it's wonderful that you are able to run; exercise is so important both physically and emotionally.

I can relate to the OCD as well. It's not nearly as bad for me as it used to be, but I still have a few issues, mostly involving checking things.

I'm only on Keppra now. At first, it was great and I didn't have any side-effects, but I now feel tired all the time and am easily exhausted. I also have problems with concentration. And multi-tasking? Forget about it! I also have problems with anger and depression though I don't feel Depressed with a capitol D, if you know what I mean, because I can laugh and enjoy some things some of the time. But I'm not sure which, if any, of my symptoms is caused by the Keppra, or left-over effects from the chemo, or what is just situational.

My dad isn't able to walk anymore. That's just been within the last two years. A couple of years before that he was really stuggling to just walk around the house and he eventually started using a walker. But before that, he had more of the remitting part of the relapsing and remitting type of MS. He would go through a period when he couldn't write very well, or raise his arm or had problems with stairs, but then he would get back to where he was before. But as he's gotten older, he hasn't bounced back as well. Sort of 2 steps back and one step forward, then 2 steps back and no steps forward. But he's in his 70's and has had this for a long time. Also, he's never had treatment.

Take care and keep running! And check in when you can

 

[saadbell]

Well bad news is they think I am bleeding somewhere so my worst nightmare has come true I have to have a colonoscopy. I would rather have anything than that, OMG I have never had anything like that. I feel for people who have colon cancer, godless them, I don't do that kind of thing well. MRI, blood tests, even a spinal tap, but that, oh that is not good. I guess my neruo called my primary doc to tell her my blood count was bad, according to her, he sounded frantic, oh the fun. But you are right one step forward and two steps back. With the three seizure meds are making me cranky:evil2:, I found out a friend of mine has been doing something I disagree with and I went off the chain, this is not me, I feel like my personality has change, what happen to the sweet person I was. Has your personality change? I think that is the hardest thing about all this, I lost my self and I don't think it will come back. Thanks for writing to me you have no idea how nice it is to have someone that understands, sending you positive vibs as well as your father.