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UPDATE FROM TINA MAUDSLEY: All, Ken passed away on June 20th in the morning at his home with me. I haven’t had a chance to fully edit the content to reflect this but am updating with new posts from a caregiver’s perspective. Please let me know if you have any questions or if I can help in any other way. Thank you for reading Ken’s blog. I hope that it helps.

My name is Ken Maudsley. I was diagnosed with a stage 4 (terminal) brain cancer, Glioblastoma Multiforme (GBM) in August 2011. Initially, I wasn’t sure what the goal of this blog would be. Now, having maintained it for over a year, I realize some reasons for it:

  1. To share my journey — how I’m doing (Updates).
  2. To share what I think (Thoughts).
  3. To document my treatment (Treatments).
  4. To share utterly useless information (Stories)

TO DO: I hope to consolidate my medical decisions onto one historical page so it’s easier to glean the choices I made.

Disclaimer
This site should not be regarded as a valid resource for treatment information – only opinion and entertainment. This situation I am in transforms my life on a daily basis, so I can’t promise that the content will always be relevant or appropriate for all audiences.

Tina and I celebrating 15 years of marriage in Ixtapa, Mexico. This was about 3 months before my seizure.

Brief bio

I was 41 years old when I had my seizure, which was on August 11, 2011. I live in Atlanta, Georgia. My wife, Tina, is taking great care of me.

The beginning

On August 11th, 2011, I had a seizure. I had never had a seizure before. I had not been having headaches or any other suspicious symptoms. I was taken to the ER at Emory. An MRI revealed a tumor in the right temporal lobe of my brain. Doctors removed it and determined that it was Glioblastoma Multiforme (GBM), a stage 4 cancer.

Prognosis

The median survival time for a GBM patient is 14 months (at least it was when I was diagnosed). This leaves hope for living much longer as well as the possibility of not as long).

Quest for information

Friends and family (way more people than I could have imagined) snapped into action, becoming over-night experts on brain cancer, treatment options, nutrition and clinical trials. There is an overwhelming amount of information available. Without their support, I don’t know how I could have made any decisions.

Decisions

I decided to go with the standard of care treatment: chemo (Temodar) and radiation for six weeks. You can’t just do this and expect to beat the odds, so our other treatment actions include:

  • Clinical trials – Experimental drugs and treatments that are really for the benefit of future cancer patients, but there is still a chance I could benefit, too. After lots of research we settled on an immunotherapy trial ICT-107 for it’s promising results to date and lack of dreadful side effects.
  • Nutrition – I’m exploring the path somewhere between macrobiotic and living foods diets. Organic is now very important to me. I temporarily quit eating  meat. I missed booze and sugar for a while, but the body and mind adapt. It’s really not that difficult to eat healthy when your life is on the line.
  • Alternatives – Eastern medicine, acupuncture, yoga, meditation, green teas, herbs, supplements, as well as metaphysical intentions and laws of attraction.
  • Hope and Belief – These are powerful tools for everyone to have in their arsenal when confronting insurmountable odds.

By the way, my (Western) doctors didn’t give much credence to diet except to warn that claims of supplements and herbs are not clinically proven and may interfere with their drugs.

Thank you

The list of thank-you cards I need to send out is stacking up high. So I want to at least say thanks here to everyone who has been helping me through their actions, thoughts, prayers, curses, etc. (Especially my wife, Tina!)

64 responses to “Home”

  1. Todd Beckner says :

    Hey Ken,

    It’s been too long and now I find out about this, I know you probably get tired of hearing it but I hope everything turns out in your favor. Maybe when you come out of this we can meet up for a Motorcycle ride in North Georgia or Western NC. Take care!

    Todd Beckner

  2. Dennis Keeney says :

    Safe Travels my Friend!

  3. Bobbi says :

    Ken,

    God be with you and your family. I know in my 4 battles with that DEMON, cancer, I had dark days when I wondered if I could keep going. Then I would look at my son and know that I would, at least for as long as I God was willing. Although in remission right now, I never take one day for granted as I know it could be my last cancer-free day. I think it’s scariest for me not for my own battle but for those I will one day leave behind. That’s what hurts. Again, I have to turn it over to God and accept that He will take care of them.

    It sounds like yall are doing the same and taking each day as the blessing it is. I pray for you and yours. Create all the memories you can now… Videos are even better than pictures. For your family to be able to watch your smiles and hear your voice, should it happen that you arent there in person, will be much more healing than just paper photos.

    Think about your bucket list, my friend…….

    Sincerely and with all my prayers raised to God,
    Bobbi Fazekas

  4. Matt White says :

    I bumped in to Lovey yesterday at Zoe’s in Vestavia. He kind of gave me the skinny. Rozelle mentioned something about a month ago but only had part of the info (some people never change:)). We certainly need to get together. You know how much your father meant to me growing up as well as all the friendships we all made through being Silver Streaks. As you well know, the amount of cancer where we grew up (especially on my side of Rainbow Drive) is above a statistical anomaly. It does make you wonder.

    Let me get to my second point. I live in Southside, right behind UAB. I live in a four bedroom home with just my wife and I work mostly from home. If my home can help in any way, whether just a Kip (English slang word for nap) or several night stay, you can stay as often as you like. Please let me know. Plenty of room for whomever is coming with you or meeting you here, if you get treatment transferred to Birmingham and it helps, of course. I live just behind Dreamland BBQ. I could go in and you could just eat the grass outside. Figured you needed some jokes and not just people feeling sorry all the time. Well, here is all my contact info and you can use it as you see fit. If you need something, ring, shoot an email, etc.

    mwhite@hengerrast.com
    205-936-2238

    Speak to you soon,

    Matt White

    • Ken says :

      Thanks Matt! It’s been great to know that all my friends from various decades of my life know they don’t have to walk on eggshells with me. Straight talk and joking around just like always has been helpful and appreciated. See you soon, brother.

  5. Hannon Hardy says :

    Ken, I wish you only the best in life. I am happy to see that you are very optimistic about your outcome. I love you very much and will be praying for you daily!

  6. Juanita Krisher says :

    Hello,
    I’m so sorry to hear about your diagnosis. I’m an ER nurse in Ohio, a brain tumor survivor (not GBM) and have a friend battling the same. She is currently 9 mos post diagnosis and post op, opted out out of treatment for religious reasons (God healed her) but just received her second brain surgery is going thru treatment. Without treatment I believe the literature states she should be dead, so I don’t believe any of that crap anymore. Especially being a nurse for 24 years and seeing the wonderful things that God can do for us. This will be a wild journey, you are on our prayer list-you and your wife. I believe in holistic care, the body responds to natural things. Dr’s don’t because it puts them out of work when it does work. Consume wheatgrass daily, it will improve ammunition to fight the growth in the temporal lobe. Take care! Hope I didn’t ramble too much, mornings are worst (seizure med levels are high).
    God bless,
    Juanita Krisher

  7. Michael Hoover says :

    Ken – thinking about you my man. God spede you.

    Michael

  8. Kim Freedman says :

    You and Tina are ever present in my thoughts and in my prayers. I agree that it is a shame that Western and Eastern medical practices are often at odds.

    Keep the faith.

    Kim

  9. Anonymous says :

    I just stumbled across your blog, and I am sending good thoughts and prayers to you and your family. In the name of the most high, Jesus Christ, let thou will be done. I pray for your recovery and long life, in the name of Jesus!

    Believe

    Marsha

  10. Stephanie Honeycutt says :

    Hey Ken,

    I too, stumbled upon your blog during a search for GBM. A year ago, I was in your wife’s shoes, doing research as my Dad had just had his craniotomy and was preparing for battle. You both have an awesome attitude and our family sends you healing vibes as you prepare to slay this dragon….. And I believe that you will🙂

    Blessings,
    Stephanie Honeycutt
    Birmingham, AL

  11. Allen says :

    I have really been inspired by your blog. I was diagnosed with a Glioblastoma on 5/21/12, had an awake craniotomy on 6/1/12 at Duke (Dr. Allan Friedman and his team at Duke are amazing) and they confirmed Stage 4. I started radiation/chemo this week at Emory. I decided to move my care to Emory because I live in Atlanta. I am also working with Dr. Read and with Dr. Shu at Emory. I think they are both great and I too really like Dr. Read’s approach to managing care. I have hope reading about your journey, your positive attitude, and our outlook on life.

    The last month has been such a whirlwind. Your life turns completely upside down in a moment (as I am sure you are aware). Fortunately, I have a family that has jumped into action like you. After the surgery, I was a bit overwhelmed by it all.

    Mine started with tingling sensations and numbness in my right hand. I was being checked out for carpel tunnel. Then I had one that went to my face. ER visit at Piedmont and the next thing I know I am being whisked off for an MRI. The journey had begun.

    I was referred to your blog by a good friend who sends me words of encouragement often. So much great information and your journey has helped keep me motivated. I am looking forward to hearing lots more!

    • Ken says :

      Allen,

      I hate to hear that you have (involuntarily) joined the ranks of the GBM Stage 4 afflicted. I would be happy to be another ally for you — someone to bounce ideas and questions off; compare notes; whatever. Other people with GBM seniority to me were there for support and knowledge-sharing when I needed it.
      Since you are apparently on the internet and writing, I’m guessing that the surgery went well and your recovery is going well too.

      I live three miles from Emory on Clifton and five miles from the Peachtree location. I go to brain tumor support groups occasionally at both locations. Maybe our paths will cross there. Actually, if you want to talk or meet, email me at kenmaudsley@gmail.com and we can exchange phone numbers or something.

      Thanks for the compliment on my blog. It has been a valuable part of my fight. And your comment came at a great time. Last night I was considering discontinuing sharing the personal stuff and keeping it about the medical. But maybe the personal is of value to others.

      Good luck.

      • Barbara McLendon says :

        Keep on with the medical, personal and anything else you want to write. Those of us who are following you and walking with you through your journey want to hear it all. Praying for you. Barbara McLendon

    • Gillian says :

      Hubby diagnosed oct 2012 , 30 radiotherapies and temodar. Month off then starting high dose temodar one week on and three off for six months. Coping welll…some bad days..keep,in touch xx

  12. Anonymous says :

    “As you well know, the amount of cancer where we grew up (especially on my side of Rainbow Drive) is above a statistical anomaly. It does make you wonder.”

    What side of Rainbow Drive or what neighborhood? This is disturbing. Has the CDC been notified? I remember Maureen Williard losing her life very young. Who else has been affected by this? I think this calls for more research.

  13. Marvin Pyles says :

    Ken,

    You’re in my thoughts and prayers!! Love you guys!!

  14. TERRY KEENUM says :

    SO SORRY TO HEAR OF THE MONSTER IN YOUR HEAD. I LOST MY MOTHER TO THE SAME THING 3 YEARS AGO THIS MONTH. THE ONLY NOTICIBLE SYMPTOM WAS SHE FORGOT WHAT TO DO AFTER BACKING HER CAR OUT OF THE GARAGE. SHE WAS GONE IN 29 DAYS AFTER DIAGNOSIS. SHE HAD A 4 MONTH SURVIVAL RATE WITH RADIATION AND MY SISTERS AND I OPTED NOT TO PUT HER THROUGH THAT AT AGE 79 AND STOPPED HER STEROIDS SHE WENT DOWN FAST, WHICH WAS A BLESSING. SHE STILL LOOKED LIKE MY MOM, ONLY BALD, BUT SO WERE MY SISTER AND I. WE SHAVED OUR HEADS WHEN I SHAVED MOM’S. COULDN’T LET HER BE BALD BY HERSELF. I PRAY THAT YOU ARE HEALED IN GOD’S NAME. KEEP YOUR SPIRITS HIGH AND CHERISH EVERY MOMENT. I SAW YOUR INFO IN THE GADSDEN TIMES. I DON’T KNOW YOU BUT SADLY WE ARE ALL A FAMILY LINKED MY THIS MONSTER. PEACE AND BLESSINGS. TERRY

  15. thisgreymatters says :

    Sounds like you have a great attitude, which is an important weapon in this fight! We’d like to invite you and your friends to join us on Facebook at Operation: ABC “Annihilate Brain Cancer”. It is just a group of patients and their families who are trying to raise awareness and fundraise for a cure. (We don’t fundraise directly, but we do post about fundraisers for research.) Good luck to you, and God bless!

  16. Laura Biggio says :

    Dear Ken, May God bless u and keep u and ur family in His hands! You are in my thoughts and prayers! Love, Biggio

  17. Laura Biggio says :

    Sorry I can’t make the weekend but would love to buy a shirt ??

  18. Steven Walls says :

    You are an inspiration to me and a source of information. I have almost exactly your story including the first seizure, been has been diagnosed at the parietal lobe on my left side. I also started a blog and i find it a constant source of strength.
    Thanks for Ginger Lowery for send me this link and hope your treatment shows improvement. Steven Walls (seizure happened late April 2012 in USA) diagnosed in Dundee Scotland.

  19. Wendy says :

    Ah Kebo! What a fighter you are. You and your wife Tina are taking this head on. I wish you the best in your journey. Praying your blood levels stay up after each chemo treatment and your body continues to tolerate the poison. I fought hard right alongside my father for the past year and a half with his battle against Cholangio Carcinoma (Bile Duct Cancer). I know the road and you are doing great!!! Irinotecan and Avastin are some awesome oncolitics. I will keep you in my prayers as you continue on your path. Hugs and love from an old “little sister.”

    Wendy

  20. Scotty Brewington says :

    Hi Kebo! You may not remember me, but we have been camping together many years ago in Helen, GA. My husband, Travis, and I are friends with Kent. I saw the poster for Kebostock on his Facebook page, which led me to your blog. I started reading and stayed up until 3:00 AM until I had read the whole thing. I didn’t know you were going through this… and you have been on my mind since I saw the post. We are thinking about you, praying for you… This blog is so brave. You are an inspiration… Tell Tina we said hello. Sending angels your way…. Scotty.

    • Ken says :

      Tina remembered you immediately. For some reason, I thought of oysters when I read your name. Thanks for the love. Kent Kimes really does have a great circle of friends.

  21. Anonymous says :

    Hi, I’m from Bangalore, India.. Jumped upon your blog while searching for any financial aids and treatments for glioblastoma. My maternal uncle is suffering from same, Have seen him go through every possible treatment (ayurveda, gamma ray radiation, huge doses of chemo, surgery and prayers of course) and we are back to where we started.

    The tumor has now grown to multiple areas.

    We are all without hopes but I would like to say that reading your blog gives a kind of strength to not stop and fight. Keep posting.

    Wish you speedy recovery..

    • Ken says :

      Thank you for writing. I understand feeling hopeless through the struggle your uncle and I share, but without hope, even the tiniest sliver, all is lost. It doesn’t trouble me too much if my oncologists and doctors feel like there isn’t anything very promising that they can treat me with anymore. My hopefulness endures (maybe without good reason but it seems to always be there. Possibly, it’s easier for me because I’m not too terribly affected by symptoms. I will do my part to help your uncle with my meditations.

      • Anonymous says :

        Ken, you are truly an inspiration. I knew in college you had a special spirit and now that spirit is shining through for all to see! Stay strong and encouraged my friend! You are not alone!!

  22. T. Stratton says :

    Ken I will keep you and your family in my prayers. Please continue to give updates. I am going through the same thing with my grandmother. She is 77 she had brain surgery on Dec 31, 2012. It is a stage four she seems to be doing well. She is in a nursing home right now I wanted to bring her home but because she has to have physical therpy and occupancianal therphy because she can’t move her left side. She just started her radiation treatments. If there is anything you can tell me to help me out or advice I would greatly appreciate it.

  23. carlos says :

    i also have a brain tumor. dont know Yet much more then this. what tYpe it is or anYthing else.
    cant move mY left side since then.

  24. Fighter says :

    Hello Ken and Tina,

    I can’t believe how brave can you guys be. My husband was diagnosed with GBM in July,2012. We got married in 2011 (I am 26 and he is 29yrs) and his diagnosis came up in 9month of our marriage. Our life was devastated…It all started with headaches and fatigues…By god’s grace he never had seizures. He was initially diagnosed with astrocytoma Grade III in April 2012…he went through surgery, radiation and temodar. His 1P19Q didnt support him and he was not responsive to Temodar. His tumor recurred and this time it was GBM. He again went through surgery in July and is Avastin infusions. Doctors gave us 15-18months survival time….He is getting better now and is responding to Avastin but I sometimes do feel is it again all deception…Is god playing games again with us….Is he really getting better…. He has changed a lot in terms of behavior….He gets irritated very easily…He wants to get rid of all attachments. I do cry in nights all alone because I miss his care and need his arms to comfort me…But then I accept the fact my life is not going to be a fairy tale and I have to stop missing all this girly stuff.All I know is I have to get him the best treatment and make him stand on his feet again. And all I pray to god is stop giving him pain. This is wrong.

    • Ken says :

      It sounds to me like you are both as brave as we try to be. Your story is quite amazing so far. You have some trying, difficult times probably ahead of you. But, I’m not sure why you would give up on your life still being a fairy tale, though. You may have some of the most amazing times ahead of you as well. That’s what I’m envisioning for all of us. Feel free to keep in touch with anything I or we can help with. Thank you for writing. We’re thinking of you.

    • Sandra says :

      Hi My son passed away from GBM sep 21st 2012 he was 29 he was first diagnosed with a Grade 3 in 2009.

      • Tina says :

        Hi Sandra, I’m so very sorry that you lost your son to this terrible, terrible cancer.

  25. M. says :

    Ken, I have been following your blog for well over a year now.. Never written before but my thoughts are with you and Tina a lot. I admire you Ken for your amazing strength and I am so happy that you seem totally unaffected by this horrible cancer. Tina is very blessed to have you with your mind still as sharp and beautiful as it was when it all started. I can feel it in each of your entries and this is truly amazing. Many GBM patients suffer a very sad personality change with extreme behavioural issues. I continue to pray that you stay this way and that you can bet this Monster’s A**! Tina, you are an amazing woman and Ken is blessed to have you. You both are doing great.

    I am 27 and my husband is 41, we have a 1 year old baby girl. My husband was diagnosed with GBM when I was 5 months pregnant with her. She is our first and only baby. Life turned upside down the second we learned about this disease. In fact it’s been a horrible time, completely heartbreaking, emotionally and physically draining for me. Looking after a baby on your own and dealing with husband’s GBM at the same time is very difficult. My husband was doing very well till mid July 2012. Now he is after 2 debulking craniotomies, 2 shunt placements, radiotherapy, chemotherapy, gliadel wafers, vaccine trial, 6 week tretment in India and countless supplements, herbs, homeopathy etc and unfortunately he is not himself anymore. It’s so sad. There are days when things are better but most of the time we cannot hold a normal conversation anymore as he hardly speaks and his personality is totally different. Possibly due to steroids but also from the tumoir itself. He is now on Avastin with CCNU and DCA and I already plan our next options as we know the tumour is progressing. I still do not lose hope even though I know I will never have my husband back as even if we stop the cancer somehow, we cannot change the fact that he is now someone else.. And this is the hardest part of it all. Therefore I am so happy for you that you still truly have each other and long may this continue. Love x M.

    • Ken says :

      Thank you for writing. Your situation seems so very difficult. I wonder if what you perceive as me still being myself is true or not. May this continue and improve for all of us. Our hope to you is for your family to persevere and thrive in happiness and abundance. Love, Ken and Tina

  26. Fighter says :

    Hello Ken and Tina,

    Thankyou so much for your reply…I don’t believe much in god now but do wish you guys have the best….

    Have you heard about Budwig protocol(http://pahomeschool.com/budwig_flax_oil.pdf).

    My husband has been taking it for last 6months and I strongly feel its helping us…It helped my maternal granfather as well who developed two cyst in his brain. I strongly recommend you should try this. It was almost impossible for my husband to eat this initially…but then doctor’s actually asked us what other supplements/treatments is he taking bcz his MRI were very clean…That’s when he started eating it regularly every evening(We prepare fresh cottage cheese at home from lowfat milk everyday and get organic flax seed oil). Your body will not easily accept it but that’s how the nature of the body is. There is an excellent yahoo groups on Budwig protocol as well(http://health.groups.yahoo.com/group/FlaxSeedOil2/). I hope that might help

    Lots of love
    Fighter

    • Ken says :

      I heard about Budwig early on. We met an 8 year survivor who swore by it. I’ve been eating the protocol daily (mornings) since December 2012. It is difficult to get through sometimes. Your commendation for it came at just the right time for me. I have been weighing the potential benefits vs. the daily hassle. So I tried making a version that is a little more fruity/dessert/smoothie-ish instead of the thicker muesli. I’m also inspired by you to make my own cottage cheese as well. Thank you for the Yahoo Group link too.

  27. Fighter says :

    heyi Ken,

    I don’t know if your doctor recommended or not but my husband’s NO suggested that he should avoid eating sugar as cancer cells love sugar. No proper research is their but it might help. My husband has been completely off sugar for almost 8-months now. He substitutes it with organic honey or fruits. Try considering that. It will be hard initially but might help..it is helping my husband🙂🙂

    Regards
    Fighter

    • Ken says :

      I addressed nutritional concerns from the very beginning, including cutting out sugar. The medical doctors sent me home without ANY concerns or suggestions regarding nutrition. It’s very disappointing that the allopathic community in general doesn’t seem to care. I think they need people to be sick so they and many other industries can continue to make lots of money. I think you got a unique NO to make sensible recommendations.

  28. Anonymous says :

    My dad had a glioblastoma. I am searching for every cure. Please update me.

  29. Fighter says :

    Hi Ken,

    Try eating Guduchi, which is an ayurvedic medicine;
    These are its advantages:
    • Preventing colds and flu
    • Reducing the side effects of chemotherapy drugs
    • Immune system enhancement
    • Chronic skin disorders such as psoriasis or eczema
    • Anti-arthritic and anti-inflammatory
    • Hepatitis & jaundice (helps protect the liver from exposure to toxins)
    • Gout and rheumatic disorders

    Here is the link where you can find it:
    http://www.himalayausa.com/singleherbs/guduchi.htm

    My husband as well as my grandfather is taking this medicine and its helping them to keep up with their immune system and platelet level.

    Lots of love.
    Fighter

  30. Caroline says :

    Hi Ken:

    Very inspiring blog. My sister-in-law was diagnosed on Thanksgiving Day 2012. She went through the surgery, radiation and chemo without any luck. The doctors wanted her to go for another round, however she chose not do. My brother has her on alternatives, unfortunately nothing seems to be working. She is going down real fast. God be with every one with this horrible monster.

    Hope and prayers to all

    Caroline

    • Anonymous says :

      I just found your blog page thru Justin, and I’m so glad I did. I love how upbeat you sound and even with all you are going thru, you are such an inspiration to us and so many. We’ve thought about you from time to time thru the years. You are such a good guy and so talented and gifted. I pray for you to be able to live life at its fullest. It’s wonderful to have Tina, the love of your life by your side. I pray for Gods blessing to fall on you. I pray for you whole again. We love you Kebo. Hang in there.🙂

    • Cheryl says :

      I just found your blog page thru Justin, and I’m so glad I did. I love how upbeat you sound and even with all you are going thru, you are such an inspiration to us and so many. We’ve thought about you from time to time thru the years. You are such a good guy and so talented and gifted. I pray for you to be able to live life at its fullest. It’s wonderful to have Tina, the love of your life by your side. I pray for Gods blessing to fall on you. I pray for you whole again. We love you Kebo. Hang in there.🙂

  31. Douglas Chonko says :

    I am the son of a patient diagnosed with glioblastoma multiform stage for approximately 2 months ago. I am also an orthopedic surgeon. I wanted to take a moment to compliment you on your sensible approach to your treatment. My medical background enabled me to become an expert in the treatment in a relatively short period of time. Treatment and knowledge of this disease is rapidly expanding. The longevity of survival continues to increase. Best wishes.

  32. Robyn cross says :

    The BUDWIG protocol is worth looking at even if you only do all the foods. Using the super foods deleting the sugars ,genetically modified foods, preservatives, and eating wild fish and grass fed free roaming animals,
    Every little bit helps the body. Exercise and mindful meditation
    I am feeling the difference
    I wish you speedy recovery and long life

  33. dotti reiss says :

    Hi Ken – I congratulate you on not only survival, but an inspiring attitude that is helping others.
    I am the mother of a 50 year old man with right frontal glioblastoma diagnosed 2/25/13. He had surgery; all could not be removed and it is stage 4, has been thru 6 weeks of rad/chemo, and will begin the Avastin chemo treatment soon. He has always been a health nut and big on exercise, rode a bike 35 miles a day right up to the day he fell and was diagnosed. He is a positive guy and has built a bike while living in a rehab center and plans to ride it this week, with the blessings of his doctors! Unfortunately he has lost short term memory, loses things, spends most of his time looking, finding, and re-organizing in a OCD frenzy. The oncologists have warned him about the anger on “bad days.” It is tough on the rest of us who want to help. I have to think his personality changes and disorders relate to where in his brain the tumor lies.
    Yours seems to be in a good place – of course there is no such thing – but the best possible. Keep up the good fight. Prayers and love, Dotti

  34. Mike says :

    Chin Up brother. Better Days on the way!

    • Anonymous says :

      KEN I KNOW YOU HAD BEEN IN TOUCH WITH STEVE WALLS IN SCOTLAND. HE LOST HIS BATTLE ON SATURDAY MAY 11. TOUGHT YOU MIGHT LIKE TO KNOW. PRAYING FOR YOU.

  35. Hilary says :

    Hi Ken and Tina,

    You are so brave.
    My 77 year old father was diagnosed with a GBM Grade 4 a month ago and is recovering from surgery to remove what they could. It went well, and he is due to start radiation therapy on Monday, and following that, possibly chemo.

    In my search for information I came across this vital research at Duke University which you probably may already know about, but for which I will add some links here. They are getting as close to actually reversing or curing glioblastoma as is possible at the current time it seems. It’s early days but seems incredible, and they have a trial open for enrolment at the moment. I’m afraid I haven’t read all your reply’s so am not sure whether your friends have discussed this this site already.

    http://www.nlm.nih.gov/medlineplus/news/fullstory_137138.html

    http://www.ncbi.nlm.nih.gov/pubmed/?term=PVSRIPO+for+Glioblastoma

    http://www.cancer.duke.edu/btc/modules/Research3/index.php?id=41

    I wish you all the very very best and good luck.

    Best wishes,
    Hilary

    :

  36. Alise Cole says :

    Hi Ken, Hello Tina. I happened to come across this Blogger address while visiting a support group on Facebook; Glioblastoma multiform. It was recommended to a family whose young adult son has just been diagnosed. This terrible beast is just unrelenting. Congratulations on 22 months! I just turned 40 and am at 17 months since diagnosis. And it has been roller coaster ride to say the least. I hope you don’t mind me checking in here on occasion. Your words give me strength and hope. In love and light,
    Alise Cole
    London, Ontario

  37. Anonymous says :

    Hi Ken
    I am very inspired by your story and wish you all the luck in the world. My dad had Glioblastoma and unfortunately died when i was very young. i am 12 now and have come to age where i want to know more about what caused my dads death and your blog has helped me very much. keep going strong!
    Georgia
    Australia

  38. Anonymous says :

    I’m so sorry for your loss. I just found this post today . I lost my father to gbm on 12/1/12 . It’s been about 7 months since he is gone and I miss him more and more .

  39. Mark Pipes says :

    My father was a dentist. He was diagnosed in April of 2002 with GBM, in great he alt for 69 years old. He beat me in a tennis match a month after his surgery. But unfortunately he passed the following March just after his 70th birthday. Another dentist in my home town died of GBM not long after my father, as did a man who did dental lab work for both of them. Now in 2013 the daughter the the lab guy, who has been managing a dental practice for about ten years, has been diagnosed with GBM. The doctor treating my father said it was a rare cancer with no well understood cause. I don’t know where to go with this, but the connection of the two dentists and a common lab contractor was enough to make me suspicious. Now the diagnosis of a fourth person with a direct link is just too much to ignore. It seems there is an environmental link that binds these four people. People should know about it and further investigation should happen. When people smoke they know the risks…but none of these people were in a position to make a choice to avoid whatever it was that gave them this death sentence. Has anybody heard of a link between dentistry and GBM? The internet so far does not yield much discussion of such a link, but this is more than coincidence.
    Mark

    • Anonymous says :

      Hi, I have forwarded this info onto a Brain Tumor Surgeon who operated on my son who had GBM 12 months ago but we lost him a few months later. Hope you dont mind me forwarding this on

    • Anonymous says :

      Mark I’m very sorry to read about your father. And the others you wrote about. It is an extraordinary coincidence indeed.

      My beautiful Father was diagnosed with GBM grade 4 on 29th April this year at the age of 77. He underwent surgery and radiation but never really recovered. These treatments seemed to contain the tumour growth, but he had fluid on his brain that was not flowing properly and this is what was causing his symptoms and what killed him so quickly. He died gently at home surrounded by loved ones on 6th Aug, 3 days before his 78th birthday. We could hardly keep up with him, as he just kept changing and declining over that time.

      One thing I noticed as I was nursing him at home was how much dental work he had had over the years. He had a partial denture as his front teeth had been knocked out as a young man. He also had many large amalgam fillings. I know that there are advocates for and against the use of amalgam, or what they call silver, fillings. Those against mercury fillings say that the mercury leeches out and slowly poisons us. Those for mercury fillings say that the mercury is bound to other minerals and that is harmless to us in this state. I can’t imagine it is healthy to have mercury in our mouths as it is highly toxic. However I imagine that one day it will be proposed that the composite fillings which provide an alternative to amalgum mercury fillings are also a threat to our biological health. It would seem logical that whatever filling material we put in our mouths might compromise our delicate systemic health over many years. However this theory only covers the patient’s exposure to potentially cancer causing toxins. What about the dentist and the associate and the daughter? Might they be exposed to the toxic filling materials? Or something else in the dental practice? My Dad’s specialist doctors said that GBM was the most common form of brain cancer, and the most agressive. Along his journey I heard from friends and family about another 6 people having died from this cancer in just the last few years. That seems like a LOT! Whether there is an amalgam filling connection or not, my family doctor has strongly suggested that I have all of my amalgam fillings removed and replaced by the modern composite fillings, and although the surgery and the new materials will no doubt put a burden on my system, I plan to go ahead and do it as the more I read about mercury fillings the more concerned I become about their long term negative impact on the body. In fact the very good dentist that I attend in my home town refuses to use amalgam. He feels that it is unsafe. One thing my GP and my nutritionist have said is not to have them all removed at once, but rather just change a couple every 3-4 months. Ask the dentist to use a rubber dam in your mouth while they are removing the amalgam to stop any small pieces going down your throat, and ask for oxygen nasal prongs for yourself whilst they drill the old filling out. My dentist happily complied with this and so I didn’t swallow or breathe in the toxic mercury.

      On a slightly different point… I my research into GBM I came across a trial that Duke university in America is currently conducting where they are introducing a modified polio virus into the brains of people with GBM grade four, and are getting amazing results of ‘cancer free’ within 6+ months. If their findings are true this is an absolutely amazing and unprecedented result for a treatment of GBM grade 4 which is highly deadly. Their criteria for participation include that that tumour must be less than 5cm in diameter, and must be on one side of the brain only, and must not have crossed to the other side of the brain. If you google duke university research modified polio virus for Glioblastoma you will find links for Duke And for their published papers on pubmed. One of my Dad’s specialist doctors said that these new experimental treatments are where the answers lie, as the medical professions have really gone about as far as they can with the traditional radiation and chemo therapies.

      I wish anyone with this diagnosis a better journey.

      Hilary

  40. Myra Hampton says :

    My brother is fighting stage 4 Glioblastoma as well. Symptoms appeared after having all his front top teeth changed over to laminates. I found the dental questions very interesting and thought I would add my experience.

  41. Amanda says :

    Hello,
    I stumbled across this blog in my search of understanding and getting as much info as possible on glioblastoma. My mom just got diagnosed today with stage 4 glioblastoma. I am trying to do all the research I can to be informed and make the best decisions possible for my her. She’s currently in Atlanta Georgia also so if anyone has any advice or words that can help in any way please email me: andoug02@louisville.edu
    I’m looking into Piedmont brain tumor center – if anyone could offer advice on this hospital or any other hospital I would greatly appreciate it. Thank you and I appreciate any help at all!
    Amanda

    • BIKEMONSTER says :

      Tine
      I am so sorry for your loss and others’ losses. I am in tears after reading all of these posts.
      My only brother had a stage 4 GBM removed from his brain in 2011 and is now doing fine after 2-1/2 years of beating the odds. He did his first round of chemo and abandonded the Big Pharma’s poison for alternative remedies. He is now taking DCA & Metformin with clean scans every since and no side effects. Also a woman named Cheryl up in Pacific NW afflicted with GBM is having recent success with these compounds + Simpson oil. I wonder if it is the same Cheryl that posted above? If so, please chime in Cheryl.
      A cure for this monster is the last thing Big Pharma wants. It would mean an end to their poison-for-profit monopoly. There will never be a clinical trial for DCA, Metformin or Simpson oil because they can’t patent it and make a fortune. All FSA approved treatments are engineered to suck up all of your money and energy right before they kill you. Believe me I know how extreme that statement sounds, but do your research and you may see the light. Follow the money trail and you shall find the truth.

  42. Sandra Falvey says :

    Hi, My son was 25 when he was diagnosed and just like you he had no headaches and was in good health. Unfortunately today the 21st September is the 2nd anniversary of his passing He first was diagnosed with a grade 3 Astocytoma then 8 mths before his passing he was diagnosed with the dreaded Glioblastoma grade4. He had 2 operations. I met a man a couple of weeks ago who has been a survivor for 6 years. I do believe there is a cure for all cancers out there but they are making too much money

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