Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by cweitz on Fri Feb 17, 2012 12:12 AM

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My brother was just diagnosed with GBM.  We are all devastated. What natural therapies do you take?  What type of nutritional changes did you make?

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by sassy50 on Fri Feb 17, 2012 03:41 AM

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I did the full process of the Radition,interveinschemo,and pill form of ncss and temador has worked so far .  I didn't change a thing in my lifestyle, I still drink and smoke.  you have to believe in god and "dance as if no one was watching,sing as if no one was listening and live each day as if it was your last...it will be 10 years on April 7th. hope this is helpful to you. I will pray.

 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by falcon69 on Fri Feb 17, 2012 07:30 AM

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What a great idea to institute a day at school in May to raise awareness of brain cancer as well as money!  As a retired teacher, I can attest to the fact that the kiddos LOVE to help others. Activities such as these align well with the character building that is going on in schools across the nation. Since my 31 year old son was dx in 12/11 with an oligodendroglioma I have been seeking out ways to raise awareness.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by falcon69 on Fri Feb 17, 2012 03:45 PM

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On Jan 03, 2012 8:19 PM jkomck wrote:

Thanks for posting this!

My husband (Daddy to three boys 9, 7, and 23 months) has been fighting this fight since December 15, 2010, and is doing OK.  No longer on Temador - didn't work.  Is now doing Avastin, and tomorrow, we will find out if it is doing its job, so please cross your fingers for us and send positive thoughts our way!!!  He is functioning very well.  Helps get boys off to school, makes their lunches, plays basketball with them, changes diapers, does his share of the household duties, essentially functioning as well - if not, better than expected with all these drugs being pumped into his body.  Hoping that continues!!!

My kids' school does a day in October where the kids get to wear pink shirts and jeans if they contribute $1 or some type of donation and all monies go to breast cancer.  I am going to see if I can have them institute a day in May where all the kids wear gray and the monies get donated to Brain Cancer.

Thanks again!  I am thinking of each and every one of you walking in my shoes, my husband's shoes, my kids' shoes...

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

byfalcon69on Fri Feb 17, 2012 01:30 AM

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What a great idea to institute a day at school in May to raise awareness of brain cancer as well as money!  As a retired teacher, I can attest to the fact that the kiddos LOVE to help others. Activities such as these align well with the character building that is going on in schools across the nation. Since my 31 year old son was dx in 12/11 with an oligodendroglioma I have been seeking out ways to raise awareness.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Janacoco on Sun Feb 19, 2012 07:55 PM

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Hi Cweitz-

I am very sorry to hear about your brother. It is a frightening diagnosis to receive either as a patient or as a loved one.

In terms of natural therapies and diets, here's what my son is using. (My son has brain cancer and is doing very well on this program.) It is in addition to the medically prescribed treatments.

1. exercise. The brain needs oxygen, plus cancer hates oxygen (that's why some are treating GBMs with hyperbaric oxygen chambers). The exercise also helps fight the fatigue brought on by chemo and other meds.

2. Daily multi-vitamins are an absolute must; the brain needs many of the vitamins to function and heal.

3. Supplements: 400IUs of Vitamin E. 200 mgs Selenium when not on chemo.

4. .02 grams of curcumin (the active ingredient of the Indian spice tumeric) per pound of body weight (in other words, a 190 pound man would take 3.8 grams per day), with 20mg of piperine/bioperine. Curcumin makes cancer cells digest themselves by triggering lethal death cell signals. You must add the piperine/bioperine to make the curcumin bioavailable.For a reputable, medical description of the positive benefits of curcumin please see:http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumi

5. 2 grams of arginine daily (2 grams for a 190 pound man). Arginine causes retardation of cancer tumor growth and enhances the immune system response.

For more details on arginine, please see:http://www.positivedesigns.com/cardio/Arginine%20&%20Cancerous%20Tumors(1).pdf

6. Must eat lots and lots of fresh fruits and veggies. Regardless of your thinking about organic, now is the time to go organic and get everything as fresh and clean as possible - that includes the supplements.

7. This one might be just a fluke, but we found that red beets (2 or 3 small ones a day) kept my son's red blood cell count strong through chemo.

8. Lots and lots of water to help with detoxification. Strongly consider bottled water. Again, everythin consumed needs to be purest/best quality.

9. Budwig diet, which consists of 1 tablespoon of freshly ground flaxseed oil to every 2 tablespoons of low fat cottage cheese. For a 190 pound man, he would need to consume 3 tablespoons flaxseed oil and 6 tablespoons of cottage cheese daily. Check with the oncologist on the flaxseed oil consumption during chemo. Sounds odd, but the combination of chemicals has produced remarkable results in a variety of cancer patients. Cancer hates whey protein (found in the cottage cheese) and the flaxseed oil, in addition to being a serious anti-inflammatory, makes the whey and other supplements in this program more biolavailable to the brain.

10. Prayer and keeping the psychological state positive. Not having the spiritual/mental side of your brother functioning at its best (under the circumstances) will lower his immune system reaction. Your brother needs to be surrounded by positive people - e-mails, visits, etc. Curling up in his own cave will be the worst thing for him.

11. No alcohol. It's just plain bad for brain patients.

12. No red meat/pork/lamb, etc. Animal fats are converted by the body into glucose (sugar), which feeds cancer. Substitute lean fish/chicken instead. If the patient absolutely requires red meat, then only once per week and just a wallet sized portion.

13. No foods or drinks with sugars.

14. No energy drinks; no fizzy drinks. Really, your brother should stick with water or freshly squeezed fruits juices. You should study up on fruit juicing - it may not be appropriate for all stages of his treatment.

Never, ever, ever give up. There are plenty of people who are long term survivors of GBM.

Jana

 

 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Janacoco on Thu Feb 23, 2012 11:33 AM

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Hi Cweitz,

My son had a discussion yesterday with his neuro-oncologist, a truly brilliant doctor, about some of the natural therapies I earlier listed for you. Here are some further comments as a result of that discussion:

1) Concerning supplements of Vitamin E and Selenium - can be continued even during chemo. There have been no conclusive studies to date indicating any interference between the selenium (any supplements) and chemo.

2) On curcumin - this washighlyrecommended. Doctor suggested a dosage rate of 2.5 grams per day for a 190 pound guy.

3) On beets/beet juice: this is excellent, but not too much.

4) On Budwig diet (flaxseed and cottage cheese): doctor said this does not work as advertized. I have seen testimonials that just rave about the plan, but according to the NO, apparently the individuals were also doing something else that worked and merely attributed the success to Budwig.

Keep up the fight!

Jana

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by josea on Mon Mar 19, 2012 05:44 AM

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Hello to all,

My daughter was 28 when she was diagnosed with a GBM IV June 22, 2011; coincidentaky my bithday. She had a 100% resection and, so far, we have been very succfessful with a treatment of CPT11, Avastin and Themodar with their supplements.

Anyone out there who I can help, please let me know.

 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Janacoco on Mon Mar 19, 2012 11:58 AM

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Hi Josea,

I have a son who is 28 and he is tackling brain cancer. What I learned from the radiation oncologist is that one of the most important predictors of success against brain cancer is the surgery. With a 100% resection, your daughter is pretty rare (I honestly have never heard of a GBM being entirely removed) and a 100% removal improves her situation considerably. The chemo may be able to mop up the rest of the cancer. Of course, the big issue we always face is recurrence, but they have technologies for that like steretactic radiation, clinical trials for other chemos and treatment advances (also in clinical trials like the Novo TTF helmet).   Apart from that, I would urge you to review my two prior postings on diet. I would encoyurage you to start with researching curcumin.

All the best, Jana

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by mgreggsmith on Fri Mar 23, 2012 05:51 AM

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In October 2006 I was diagnosed with a grade IV glioblastoma multiforme.  I was told that I had somewhere between 3 months and 18 months to live, with 12 months a good guess.  However, after two years I was still alive.  So I assumed the original diagnosis was incorrect and I asked for a second opinion. No, the original diagnosis was correct.  It is now over nearly five and a half years since my diagnosis and there is no sign the tumor area is active.  I had brain surgery, radiation and I continue on monthly doses of Temodar.  And.....nothing.   A friend recently sent me a photocopy of a short chapter entitled: "The Median Isn't the Message" in a book entitled: "Bully For Brontosaurus" (1991) by Stephen Jay Gould. Some traits (aside from luck) suggested in the article for survival were: a sanguine personality, positive outlook, a sense of humor, good health, early diagnosis, good medical care (the best the country has to offer), having something to live for, and so on.  Read it yourself - and keep your chin up.  And stop calling it "cancer."  That word terrifies people.  A grade IV GBM is "primary tumor."  Now, don't you feel better? ; )

 

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Cristiana on Fri Mar 23, 2012 06:23 AM

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Dear mgreggsmith, Thanks you for posting I don't know if I will be able to sleep I am SO happy ! Could you please share your treatment and the center you went to ? Obviously you must be methylated. Congratulations And MANY more years to come Cris
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