Information for GBM Patients
Dear GBM Patient/Caregiver,
This is a memo I give to people who receive a GBM diagnosis. Not all the information will apply to your situation, but I hope you can take from this anything that is helpful. I am a seven-year survivor and I’ve heard of people surviving as long as 25 years. There are many who are researching a cure, and significant developments toward finding a cure have occurred even in just the past few years.
Having lived with a grade IV GBM diagnosis for seven years, I understand the fear and desperation you may be facing right now. Over the course of the past years, I have learned of several treatments and information that may prove to be helpful in your journey battling a brain tumor. I put this document together to share with fellow fighters such as yourselves. I was diagnosed in December 2015. I have now had clear scans with “no evidence of the disease” since June 2016. I believe Christ has healed me, and he can heal you too. God can do “immeasurably more than all we ask or imagine.” Ephesians 3:20.
My story was featured on LifeTime TV and available on YouTube here: https://www.youtube.com/watch?v=FNgY-NpGBPQ&t=13s
Statistics
I try not to read them or dwell on them. The stats on brain cancer survival are not accurate because they clump everyone together, as confirmed by one of my doctors. There are dozens of factors that make a difference one way or the other. Remember a doctor’s job is to give you the worst news. No one but God can put an expiration date on your life. The truth is many people live long and beautiful lives after even the worst of brain cancer diagnosis; they are just not sufficiently tracked for statistics purposes.
Medical Care: Conventional and Natural
A thorough and cutting-edge medical team is critical to obtaining the best care. Good hospital and medical groups for brain tumors include the Duke Cancer Institute (Durham, NC); Sloan Kettering Cancer Center (New York), and Baylor Scott & White Nuero-Oncology Associates in Dallas, TX (specifically Dr. Karen Fink).
Dr. Fink is my nuero-oncologist, and we have been very pleased. For surgery, I recommend Dr. Toral Patel at UT Southwestern in Dallas. For me, she was able to remove all visible tumor. If you are told your tumor is inoperable, it’s important to get a second and even third opinion. One surgeon told me he could not operate, then Dr. Patel removed all visible tumor. Following surgery, I underwent the standard radiation and chemotherapy for approximately 6 weeks. Following this time, I did 24 rounds of “Maintenance Chemotherapy” over the course of two years.
Equally important is consulting with a good expert for nutrition, diet and other treatments. Be aware that many physicians and surgeons will advise that diet is not important. They are wrong. They simply have not been trained in nutrition. Everyone who successfully battles GBM has instituted a strict diet and supplemented standard medical care with natural treatments.
In Dallas, I strongly recommend Dr. Barham Meymand. His specialty is for all cancer, not just GBM. https://junemeymand.com/ Dr. Meymand provides supplement and dietary advice, as well as alternative treatments, like vitamin infused IVs, foot detox, acupuncture, and more. Patients are also allowed to stay in her facility (even overnight), and they provide meals.
Another Option Nationwide is Nutritional Solutions. https://www.nutritional-solutions.net/. Dr. Jeanne Wallace and her team were recommended to me by my oncologist. They specialize in brain cancer and provide individualized diet and supplement plans for GBM patients. Their consultations are done virtually.
Reading Material & Support Groups
I recommend reading:
Anticancer a New Way of Life by David Servan-Schreiber MD PhD
Radical Remission by Kelly A. Turner Ph.D; and
Surviving Terminal Cancer by Dr. Ben Williams.
I am also a member of a Facebook support group called, “GBM Surviving and winning.” It is a wealth of information.
Working, Financial Help, and Assistance
STRESS MUST BE AVOIDED AT ALL COSTS, which is why I recommend not working while on treatment. I have found that getting well is a full-time job in and of itself. Instead of working, I opted to help with homeschooling my niece and nephew as well as doing some volunteer writing and editing for nonprofit organizations to occupy my time and keep my mind active. After finishing chemotherapy, I have been able to gradually bring work back into my routine. I now work part-time from home as a consultant.
GMB patients should apply for Social Security disability as soon as they can after receiving a diagnosis. https://www.ssa.gov/planners/disability/dapply.html It is relatively easy, and I was approved very quickly without having to undergo an interview. They don’t appear to question GBM as a legitimate disability.
Keep careful track of all medical expenses for tax deduction purposes, including vitamins and supplements prescribed by any doctors, naturopaths and/or chiropractors. I did this by opening a separate bank account with a debit card solely for medical expenses.
If you are forced to withdrawal money from a 401(k), you likely qualify for an exception to the strenuous tax consequences for early withdrawal but should discuss with an accountant before making the withdrawal.
I also recommend asking a friend to set up a fundraiser for medical expenses through “Go Fund Me” or an equivalent online fundraiser. It helps to have a friend do this and the initial promotion because people will be more likely to give. Of course, you and your family should also post on Facebook, Twitter, and via email.
I also had a friend use “Caring Bridge” to coordinate meals to be delivered to my family. Even when food brought was outside of my diet restrictions, it was helpful for my family. I also had friends offer to do an array of things to help financially, from T-shirt sales to bake sales. I never refused the help.
Spiritual Help
It is critical to stay focused on Christ during this time. I prayed after my diagnosis that I would run toward Christ and not away from Him. I have story after story of how he provided for me, sometimes right at the last minute. Be prepared to experience multiple examples of His faithfulness to you during this time. And do not be afraid to ask Him for anything, big or small. As Paul reminds us in Ephesians 3:12, “through Christ we have the right to go boldly before the throne of God with our requests.”
I encourage patients and family to place immediate and regular prayer requests to churches, friends, and through social media. I keep a small group of faithful prayer warriors on hand for prayer requests that I wish to keep more private. I also recommend asking the Elders (or their equivalent) of your church/parish to specifically pray for healing in accordance with James 5:14.
I was not able to make it to church every Sunday due to feeling ill, or to avoid germs during flu outbreaks. When that happened, I would listen to a message on Youtube or via a live Internet service and take communion at home. Some churches/parishes will deliver communion at home, additionally Joseph Prince publishes a helpful booklet on Communion with prayers for an at-home communion, “Health and Wholeness Through the Holy Communion” available at JosephPrince.com. I would also say healing scriptures out-loud, as well as rebuke cancer an illness out loud in the name of Jesus Christ.
Matt Chandler, a Dallas-area pastor who survived GBM has a helpful and short Youtube video about how to pray for healing, which can be found here: https://www.youtube.com/watch?v=v51BqqGjSNQ.
Diet
The most important thing about diet is to implement one you can stick to. Some people are able to do a full Ketogenic diet. (https://www.ruled.me/guide-keto-diet/) I’m not fully Ketogenic, but I eat all organic, anti-biotic free meat; avoid sugar and chemical substitutes (Stevia and Swerve are okay). I even avoid certain fruits. Berries are okay. Blueberries are very good for you. I try to keep my carbs low as well. In short, I consume no sugar, no white flour or white rice, no alcohol, no milk from an animal such as a cow or goat (coconut milk is a good substitute and often available at coffee shops like Starbucks) For dairy, organic aged cheese and organic sugar-free dairy is okay. I also avoid sunflower, safflower and vegetable oils. Butter, avocado oil, and coconut oil are best. Aim for a plate of 50% Veggies, 30% meat and 20% grains. I also try to get organic veggies, dairy, fruits, and grains as much as possible. I also avoid starchy vegetables like potatoes and corn.
Of course, this can be modified if absolutely needed. Often, I would allow myself more carbs when on chemo because I had a hard time keeping anything else down. It is important to consult a nutritionist or other qualified expert for assistance with diet planning.
Supplements
I follow the Supplement plan provided by my nutritionists and add additional Omega 3 oils and Garlic capsules. I also take two drops of medical grade Frankincense oil (Young Living brand) under my tongue three times daily. I take two squirts of CBD oil three times daily under my tongue. This does not contain TCH and can be legally purchased here: https://pluscbdoil.com/cbd-products/cbd-oil-spray/pluscbd-oil-spray/ (choose the Peppermint or Vanilla flavor). I drink 32 oz of Macha Tea daily (you can usually find at Whole Foods, Sprouts or Asian grocers), first boil ginger root in the water then add the tea mix. This can be drunk hot or iced. There is a mix available on Amazon that contains ginger and turmeric, so you don’t have to separately add those ingredients: Match Tea with Turmeric on Amazon
Optune (by Novocure)
As part of my on-going treatment, I wear a head device, called Optune or Novocure, Optune patient website. I experience virtually no side effects and find it easy to use. Studies show proven benefits. I recommend asking your oncologist to prescribe it once you have completed radiation. The team at Novocure is well trained and exceptionally accommodating. They even deal directly with your insurance company so you don’t have to. A TedTalk on Optune can be viewed here: https://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields/up-next
Other Helpful Tips
· CMV Virus: Ask your doctor to test you for the CMV Virus and prescribe Valcythe (an anti-viral medication) if positive. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922527 This is especially important if you have ever contracted Lyme Disease or mononucleosis. I tested positive and was on Valcythe (an anti-viral drug) for 4 months.
· Celebrex: Celebrex is an anti-inflammatory drug, which I take daily. Studies indicate it may stop the growth of tumor cells https://clinicaltrials.gov/ct2/show/NCT00068770
· Exercise daily, even on days you feel awful, simply walking to the mailbox and back is imperative to keep you body active. On better days, aim for 30 minutes of walking or other exercise daily.
· Avoid cookware and vitamins that contain copper. Copper contributes to brain cancer growth
· Use glassware or BPA free storage, glasses and water bottles. These can be purchased on Amazon.
· Avoid using the microwave
· Avoid all kinds of stress as much as possible
· Take oxygen daily. You can buy oxygen canisters; (https://www.amazon.com/95-Pure-Oxygen-Boost-Supplemental/dp/B077NPSQB2/ref=sr_1_1_a_it?ie=UTF8&qid=1519878858&sr=8-1&keywords=oxygen+canisters) have oxygen administered by a naturopath or oxygen bar in your community, or order and oxygen machine. I use this one (https://www.amazon.com/Zadro-Products-OXY01-Tranquil-Personal/dp/B000XTBHFK/ref=sr_1_26_s_it?s=hpc&ie=UTF8&qid=1519878920&sr=1-26&keywords=oxygen+machine) thirty minutes a day, when possible.
· Stay positive. Fear Not. Christ Heals. Know you will have a beautiful testimony once you get through this.
Please feel free to contact me with any questions:
Jeanneane Maxon
455 Crystal Clear Lane
Princeton, TX 75407
Email: JNMaxonConsulting@gmail.com
Cell: (405) 642-5637
https://www.facebook.com/jeanneane.maxon
For Him,
Jeanneane
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. –Galatians 6:9