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Miles22's Message Board Messages

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RE: Looking for gliosarcoma survivors

by Miles22 - September 15 at 2:07 AM

Has anyone found any new immunotherapies for gliosarcoma patients (glioblastoma)?? I am still following same naturopathic list of supplements, ketogenic diet, but stopped novucare after a year as it effects what you can do by wearing it (sweat and heat doesn't work with it).

I believe we are close to a cure, I truly believe if we keep on fighting to live well, no one will have to ever hear about the months we have to live anymore.

No sugars / healthy whole food diet / supplements that help immune system / excercise / BELIEF in beating it.

Stay positive

https://www.kdrv.com/content/sports/Oregon-Techs-Matt-Miles-

RE: How to help a friend?

by Miles22 - March 06, 2019

Another thing I completely understand about your friend is the unwillingness to read much about glioblastoma/ gliosarcoma. Not knowing what I had I started going online and reading about it. The expectations are so bleak that I stopped reading about it myself.

I came on this sight to find paths of those that were beating the odds. See if others were doing things I didn't know about that they believe have a very positive effect.

RE: How to help a friend?

by Miles22 - March 06, 2019

I will say your empathy and willingness to help a person you care for is the kindness that has truly inspired me as I am in a situation of stage IV gliosarcoma and over 2 years ago was told that I let it progress far too long and would hopefully after resection only get another 2 to 3 months of life. I will say I have no medical knowledge so I didn't know the steps to take to start down the best path to extend my life past my prognosis but many friends and family members wanting to help gave me alot of advise on what they had learned about winning the battle.

I was able to follow many of those suggestions that made sense to me on how they would have a positive effect on extending my time with those I love and simply the beauty of life. I truly can't thank all that take the time trying to help me enough. Even more powerful than the information given was seeing how many people cared for me.

Belief, hope and love are so powerful in beating adversities and in living a life full of happiness. The friends I have that care like you are so important to me and keep my focus on doing all I can to keep making the best steps to be here with them.

My wife and children have given every day happiness and meaning. I keep shorter time related goals in front of me all the time to look forward to and a couple of my best friends set up bigger activities than I could ever imagine, in August my buddy that I knew since kindergarten setup a trip to Ireland in August to golf some of the best courses. Circled on my calendar as I continue to do all to stay healthy and least give him a challenge (not great golfer, LOL) on those courses.

Trust me, nobody cannot see how much you care for her and all you are doing is trying to help her find the best path to beat cancer. Stay positive.

RE: Need advice

by Miles22 - February 01, 2019

Is he living in the US? If so they will probably put him on daily oral chemo and advise him into a 5-6 week radiation path. I did both as I was diagnosed with stage IV gliosarcoma over 2 years ago. The path that you will hear from many I have in similiar situations is the value of excercise, diet (I personally went ketogenic diet day after resection to eliminate the growth due to sugar and carbs), and naturopathic supplements to battle brain cancer (boswella serratta, omega 3, tumeric, melatonin, ginger, products called lions mane and turkey tail). Others have very similiar list but with other added supplements which they are having very positive results with. After radiation I did find a doctor who would prescribe the optune device.

Positivity and the power of belief are huge assets to win the battle. I can't thank my family and friends as they backed my chosen path to face the adversity of terminal cancer.

The best to your cousin, family and yourself as you help him or her win the battle. Take care

Congrats on the clear MRI. Keep showing up every 2 or 3 months for MRI to prove you are on the right path and that excitement that you're up to win the fight. I take no meds but believe in ketogenic diet to rid sugars, regular excerise, optune device and the naturopathic supplements: omega 3, tumeric, boswella serratta (sp?), ginger, melatonin, green drink, and mushrooms with marketing names of lions mane and turkey tail.

Yours sounds much better overall as you have a longer list of things that you have either found more info on or believe in and hopefully both. Belief I believe is the most powerful and setting achievable goals and steps. 

I owe my family all I can do to relieve the stress and worries with a completely positive attitude and effort to bring happiness into their life. I drive up every three months now for MRI and oncologist meetings and always by myself to tell all to relax because I will call them immediately afterwards to give them the good news I expected.

As a husband and father of three it is my responsibility to take care of them and make their lifes better: goals that I live for and enjoy everyday.

Keep winning the battle, enjoy each and everyday with those you love. Take care

That is awesome that you are wearing and keeping the cancer at bay from growing. Agree that it is a huge benefit and not to overwhelming but I do "unplug" myself alot to be more active than prescribed. Believe the best path is excercise, diet and optune device all working in coordination.

Onto 3rd year away from diagnosis and resection and still feeling great.

Hope your MRI results were great and give you time not to worry but enjoy life much more. Best to you and your family

49 yr old male 2 years out of stage IV gliosarcoma resection. Was told wrong gene for many opportunities for immunotherapies so found a doctor that would prescribe me the Optune Device. The device changes the freedom I loved to be able to excercise, sweat, be out in the sun anytime I felt like doing those things. I think the device works very well but I have not been as strict keeping to the prescribed 18 hours daily. There are times I can wear it longer but most days I rip it off to workout, play golf and get outside more. Try to sleep in it at least most days.

Agree completely with ketogenic diet, naturopathic supplements, regular excercise, regular sleep and positive attitude in being up for the challenge.

Headaches had been pretty regular for the 1st year after surgery and much more rare now.

I have to give credit to this situation for really opening my eyes to how beautiful life is and how happy my wife, family and friends and even work make my life.

Believe in your ability to win the battle, thoughts and prayers to you and your family.

Trabs

The 2 things you are saying about yourself are the only way I believe in beating cancer. Optomistic approach to win the battle and continuing to live a healthy life with great diet changes and consistent excercise.

I am a stage IV gliosarcoma survivor who went down all the paths recommended after resection with 6 weeks of radiation and temodar followed with the 5 days high dosages of temodar and 23 days off.

15 months ago I made decisions about how to extend my life without chemotherapy as the constant two weeks of becoming lethargic and sick while taking the high dosage then working back to feeling better to get to start the process all over again. To truthfully answer your question the side effects were doable with temodar especially the first 6 weeks doing it daily, going to the 5 day monthly pattern showed me how great I started to feel before the next 5 day schedule. This didn't fit my life trying as at times it took all I had to bring  the needed energy to coach and build my collegiate baseball team.

Now that I changed my path to live better (and I truly believe longer) I keep to a strict ketogenic diet as to not feed cancer, workout a minimum of 4 times a week, continue a naturopath schedule of boswella serratta, tumeric, ginger, Omega 3, two mushrooms that I can't pronounce but go by names on the bottles of Lions Mane and Turket tail and melatonin.

Only days I have missed work after surgery were the day trips to travel the 5 hours to get my MRI and Oncologist appointments every 2 months. So being younger than me, positive and physically in shape I would think you could handle a work schedule well.

Best to you and win the fight. Take care

RE: My Story

by Miles22 - January 11, 2019

Erob72, I am another PNW brain cancer patient. I was sent to OHSU in Portland two years ago and had surgery to remove as much of the stage IV gliosarcoma tumor as possible. Was told by my neurosurgeon that surgery went well but expectation of life should still be only 2-3 months and he would not release me to go back and work with my college baseball team.

Those were the hardest as I had to hurry to setup all things for my beautiful wife and children to take care of them after I am gone. I followed the same path of radiation and daily chemo followed by 6 months of the 5 days taking chemo 23 days off but hated how it made me feel as I had found a different doctor who released me back to coach and chemo took away my energy far 2 much. So 14 months ago I went against my Doctors advice and stopped chemo as I preferred to live a better life even if that may cause it to be shorter.

From day 1 getting home from surgery I bought into a strict ketogenic diet to not allow the cancer to feed off of sugars or carbs, when into a naturopathic path taking many similiar pills of omega 3, frankenscence, two mushroom types, tumeric, ginger, melatonin and went right back into my normal routine of lifting and running.

I've always loved the work and attitude it takes to win in sports and I look at cancer as my new opponent I need to put everything into thathallenge to beat it. This may not sound right, but I have to give this situation credit to opening my eyes to how beautiful simply life is and the time we have to spend with those we love and do those things that give us such great happiness.

I will be the first to admit that I have zero medical knowledge and no factual backing to the path I chose to beat gliosarcoma, but I have total belief and faith that the path I have chosen to take will give far more great days with those I love.

My thoughts and prayers go to all dealing with cancer issues. Fight the battle

I was diagnosed on Feb 8th 2017 with stageIV gliosarcoma and told that three more months would be about all I had left. I followed protocol with radiation and chemo for 6 weeks and then followed with 5 days taking chemo each month. I am a college baseball coach and chemo was making me very lethargic so I stopped last November and decided to live a better life. Started from day 1 to use the ketogenic diet to take away sugar from feeding the cancer. Worked out daily, took naturopathic pills (mushrooms, tumeric, omega 3, frankenscence) and did start the novocure optune device which I believe has stagnated the growth of a very aggressive form of glioblastoma.

I'm nearing 18 months and still feeling great and working everyday coaching a summer collegiate league and getting ready for my college team coming back in September. I believe in the value of the optune device, keeping physical workouts, ketogenic diet, naturopathic path, and most importantly believing in your ability to beat the challenge. 

I give credit for this situation to truly open my eyes to how beautiful life is and to enjoy everyday to the fullest. I keep goals to reach different milestones in good health (the next is my 30th anniversary with the love of my life and my best friend on September 10th) then to coach my next season, etc..

I am not a medical expert but would recommend the optune device, ketogenic diet, and naturopathic opportunities but most importantly stay positive and keep the power of belief in both you and your and husband,  Youre both in my thoughts and prayers. 

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About Miles22

Patient, Survivor
Brain Cancer
Naturopathic Medicine, Prevention Tips, Supplements

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