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Glioblastoma Stage IV Brain Cancer

Faith_Moves_Mountains's picture
Faith_Moves_Mou...
Posts: 6
Joined: Jul 2017
Faith_Moves_Mountains's picture
Faith_Moves_Mou...
Posts: 6
Joined: Jul 2017

Will talk and provide support and prayer!

trinityd83
Posts: 4
Joined: Jul 2017

I hope this is the correct place to post this? My fiance (26 years old) was recently diagnosed with a GBM stage 4; I am 24 years old and am caring for him right now for the most part (even though he insists on caring for himself lol). He had a craniotomy 2 weeks ago to remove the mass and started temodar and radiation this week. Before he was diagnosed he complained about headaches but no seizures, loss of vision or anything like that. His tumor was on his right frontal lobe and from what the oncologist has said it looks like it mutated from a stage 2 to a stage 4 (not sure if this is good news or bad news?). We are about 2 months out from our wedding and while so far he is tolerating the medicine pretty well I am concerned moving forward if I can expect any serious changes in him? Also, they were able to remove all of the

We are about 2 months out from our wedding and while so far he is tolerating the medicine pretty well I am concerned moving forward if I can expect any serious changes in him? Also, they were able to remove all of the tumor as well and I am curious to know if this increases his likelihood of long term survival? We have both researched GBM stage 4 and see the prognosis of individuals diagnosed; he is staying positive but definitely has his dark days. Is there anything I can do to help ease his fears moving forward or encourage him on his recovery? 

I am sure this post is completely jumbled so I apologize in advance. Any advice, support or encouragement would be greatly appreciated!! 

May God continue to bless you all! :) 

Faith_Moves_Mountains's picture
Faith_Moves_Mou...
Posts: 6
Joined: Jul 2017

God bless you and your fiance.  Best advice we can give is pray and have faith in God.  I too am a GBM stage 4 individual; however, I know that God healed me on Monday, June 5th!  I was healed by the holy spirit!  I was walking around my house that morning praying aloud and just having a conversation with God.  My devotion that morning had included the lady that had bleeding for 12 years.  She had seen every Doctor and spent all of her money.  She heard that Jesus was coming near so she made her way to his location.  There were lots and lots of people there so she battled the mobs to get close to him, she ended up on here hands and knees crawling and she was able to just touch the hem of Jesus' robe.  At that point Jesus told the Disciples that someone touched me.  Their reply was of course someone touched you Master you're surrounded by a mob.  But he response was this touch was different because something went out of me.  The Bible doesn't say this but I surmise that if something went out of him, then something went into her!  Well on June 5th as I was talking to my Lord, OUR LORD, something went into me!  I had never had the holy spirit in me before!  It was so powerful!  I could not control myself!  I was uncontrollable jumping and shouting down on my knees praying, I had chills but I was hot.  It was the most moving experience of my life.  In addition, my morning devotion included the parable of the Fig Tree...in summary he told his disciples that if they asked God in faith and believed, then they could ask him to move a Mountain into the Sea and it would be moved if they only believed.  So that morning I was asking in faith for God to "move a mountain" for me.  He healed me that day!  Well we've had MRI's since that day and they still show cancer growth but I know that I'm healed....the Doctor's and their MRI's are just a little behind!  I will pray for you and your fianance, I just ask that you guys just keep the faith and keep believing and he WILL be healed.  we had a total resection of our tumor back on October 18 two days after the lemon sized tumor was discovered on my right temporal lobe just above my ear.  We did radiation and Temadar but our May 31st MRI showed new growth.  We took our last Temadar treatment on May 19th, found the new growth on May 31st and we didn't have any treatment until last Thursday, July 13th because Duke was trying to get us into one of their trials.  Long story short it didn't work so now we're doing CPT11 and Avastin as well as the Optune.  But as I tell/told my doctors, they can give me an aspirin and send me on my way because God healed me on June 5th and they'll catch up to what he's done soon enough.  Please you and your fiance except this gift from the Lord, because it's there for you.  Just ask him for healing and believe! We never had a seizure, never lost movement on our left side, never lost speech or experienced a personality change.  We take the two different types of chemo every 2 weeks now. Scheduled for one on Thursday.  Throughout this entire ordeal, God has blessed us!  We began going to the gym 4 weeks after our surgery and now we attend the gym everyday but Sunday.  Due to the steroids, we put on about 30+ and today when we stepped on the scale we were back to our "fighting weight" of 175lbs.  We were slightly over that when we were diagnosed back in October.  So not only has he healed us but he's going to bring us back better than when we started this ordeal.  Not saying these things to brag on me but on our maker/creator, our God, our Father that's always there for us, all we have to do is ask.  Since I was filled with the Holy Spirit and healed on June 5th, I feel selfish NOT sharing the power of our Lord!  He can do ALL things except fail!  We ran almost 2.5 miles today (2.47 to be exact) did an ab work out and played basketball.  Today was our cardio day.  Only through his grace are these things possible!  Every treatment and every story is different, but just trust in God and any treatment or none will work.  Please, please if you don't remember anything from this post, just remember to pray and ask God for healing and then believe that he has done it!  It's that simple!  Through prayer you, me, we have the power to ask God to move mountains, and he'll do it!  If we only believe!  He is an awesome God.  I can't praise him enough.  If you notice, I use WE in my speech a lot.  The we is me and God because he is ALWAYS with us. Oh thank you God.  I now have no problems sleeping at night and I don't worry.  The Bible/God says pray and don't worry.  Bring your cares and worries to him and rest easy because he's got it from here!  We love you in Christ, God bless!

trinityd83
Posts: 4
Joined: Jul 2017

Thank you so much for sharing your story & advice! I apologize or the delay in responding to this. Have you or anyone experienced low levels requring chemo to be paused? He hasn't taken his medication in almost 2 weeks because his white blood cells and playtlets were so low. Just curious to know if this is normal. Thanks again for your prayers I will be praying for you as well. 

clgoelzer
Posts: 6
Joined: Jul 2017

I am so sorry to hear about your fiance's diagnosis. Keep leaning on each other to get through this. And I hope you have other people helping as well. This battle can be exhausting. From what I've learned about GBM 4 (my husband was diagnosed in June, 2016), your fiance has several things going for him. 1 - his age, younger people do better; 2- tumors that change from low-grade to high-grade can have better survival rates; 3 - complete resection of the tumor definitely helps. Radiation and other treatments can have their affects, some of them long term, so you may see some changes and increasing difficulties in the weeks and months ahead depending on how his body responds.  If you're working with a good team of doctors, they should be telling you about all options. But I found researching on my own to be  very helpful too. Many GBM patients have success with altered diets, drug combinations, etc. And there are several trials going on that might be available to your fiance if his tumor recurs (which is likely unfortunately). Keep reaching out for help. I will share whatever i can that might be helpful.

Stay strong and positive and have your fiance do the same. Read, inform yourself, do enjoyable things as he's able.

trinityd83
Posts: 4
Joined: Jul 2017

I really appreciate the advice!! I am definitely seeing some effects...mainly in his mood & mental health. It seems like his patience is quite low...but I am assuming this may be a side effect from getting his brain radiated 5 times a week. Anywho it is good to hear that he has factors on his side that will lead to a more favorable outcome. I will definitely be reaching out with any questions or concerns I have. Thanks so much!! 

Aussiegal
Posts: 1
Joined: Aug 2017

My father is in the same boat as your fiancé. He just had a craniotomy last Thursday, and is to start radiation and chemo next week. They were able to remove most of the tumour, however the tentacles have made their way into a part of the brain that can not be accessed via surgery. I'm reading with intent as to what lies ahead for all facing such a situation. 

twa767cap
Posts: 2
Joined: Aug 2017

My husband, age 69, was diagnosed with a glioblastoma mid July 2017  He had surgery at James Cancer Center, Columbus, OH on AUgust 2   We have an appt with the surgeon and an oncologist on August 14-15 to discuss treatments and various other things.  Our questions are    Is it worth the problems  and cost with the treatments to do them?  Should we try and go to one of the Cancer Treatment Centers of America for a second opinion?  Just asking.  God has gotten us this far and he IWLL get us through.  THANKS.  

Dyand's picture
Dyand
Posts: 1
Joined: Aug 2017

My husband was diagnosed with a grade 4 Glioblastoma brain tumor on oct 5 th 2015. He was operated on the 6th and home on the 8th. The surgeon was confident he had resected 100% of the tumor BUT was quick to remind us that it would also 100% be back. My husband at the time was 65, never sick a day in his life. Treatment was started within 2 weeks of the surgery. 6 weeks of radiation 5 days a week, 15 minutes each time . Also temador which is chemo medication  initiated . He was then having MRi's every 2 months. May 2016, he had a recurrence. Luckily it was right on the resection area of the initial tumor. 1 gamma knife radiation treatment and then every 2 weeks he had an infusion of an immunotherapy drug. Avastin. It's supposedly has a 2-6 month average for holding off regrowth or progression. He was doing really great. Some short term memory loss but otherwise not doing too bad. May14 th 2017, my 60 th birthday , he had a stroke. Not able to move the left side of his body. Avastin can cause strokes . So can xarelto which is a blood thinner that he had to start taking as a result of a massive blood clot from his hip to his ankle that was from the initial surgery.Our oncologist reminded us of our ongoing "quality of life" continued statement . We agreed and he then said lets concentrate on getting mobile so we can resume cancer therapy. Jack is now 67. Medicare will not pay for rehab and cancer treatments at the same time. It's been 3 months. Very little recovery so far. He can not sit by himself. Can not walk , go to the bathroom by himself ...nothing by himself ..At times very confused ... He had an MRI 3 weeks ago. I thought for sure the tumor must be back after over 3 months of no cancer treatments . The tumor is still stable! Only very slight enhancement ... we are working very hard to try and get him to the point of being able to transfer into a wheel chair so we can resume cancer treatments . Bottom line ... never give up hope! There are some people , that actually do well and live for years . DO NOT EVER LOSE HOPE!!   

trinityd83
Posts: 4
Joined: Jul 2017

Hello!! I am sorry to hear about your husband's recurrence. I pray that he continues to get better & I am doing my best to not give up hope!! Thanks so much!!! 

twa767cap
Posts: 2
Joined: Aug 2017

Where did your husband receive the Gama knife radiation treatment?   We are going to James Cancer Center with Ohio State University and will start STANDARD OF CARE treatment on 28 August. 

 

rbmiagi
Posts: 1
Joined: Aug 2017

On August 11th, my husband went into the ER for an MRI requested after a fall he had a month prior. We thought his headaches and vision distortion may be due to a concussion. Low and behold the doctor saw a mass on the right side of the brain. It was confirmed on August 14th. Surgery went very well with the whole tumor removed. I have hope that he will overcome. After reading all these posts I now have more hope that we can fight this. God is always on our side and I know he is working for us all the time. I pray for all of you and your loved ones who are going thru this experience.

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BrookeJoy
Posts: 1
Joined: Mar 2018

My twin sister had a full resection of her Glioblastoma. Her doctor said with treatment she has a good chance of never having a recurrence. It is such good news, but why does No one else ANYWHERE on the internet report this good news. It scares me that the doctor was being sensitive to make her feel hopeful. She probably cannot get the additional treatments due to no insurance, so we hang our hopes on the doctors saying she is not likely to have a recurance. Could this be true?

CindyRae
Posts: 1
Joined: Mar 2018

I have never read or heard of anything that would point to a doctor saying to not expect a reoccurrence.  That is the nature of the glioblastoma brain cancer.  Has she seen her nuero oncologist yet?  The surgeon wouldn't be who you should listen to about the prognosis.  My husband had his surgery in September of 2011 and was a glio tumor the size of a small orange in the right front temporal lobe.  He has had many reoccurrences but the chemo has been successful each time.  

jrnorth8
Posts: 1
Joined: Mar 2018

My deepest apologies, but I agree that the surgeon is not typically able to give advice on the nature of the cancer. It is the oncologist who is best at answering questions about the prognosis. Glioblastoma is known for its high reoccurrence rate. Not to be a bummer, just trying to give you the most accurate information so that you are not blind-sided in the furture.  There is definately hope, so don't give up! so many amazing advancments are being made at this very moment! My husband did not respond to the chemo.  He had a resection of about 80% of the tumor (stage 4 glioblastoma), radiation for 6 weeks, temodar. with no success. He was given these treatments when he was diagnosedwith stage 3 anaplastic astrocytoma, and it progressed to stage 4. He then went through many rounds of Gleostine (CCNU), again, with no success. He is now on a clinical trial in which he gets infusions every few weeks, of Avastin (it only kills bad cells, unlike chemo), and this stabilized the tumor without chemo. He is now wearing the Optune Cap, along with doing the Avastin, and has gone from 5 partial seizures a day, to only one partial seizure since the Optune was put on six weeks ago, MRI on April 11, 2018, and crossing my fingers, but the oncologist believes with the dramatic decrease of seizures, the treatments, without the chemo, is working. He was diagnosed on my birthday... June 13, 2016, and is still here and fighting. This is after he beat Luekemia!!! He just turned 50, so he is young. The goal of his oncologist, as of present, is to keep the tumor stable until the cutting edge clinical trials are approved by the FDA, which he believes are very near to happening. My husband recieves treatment at Cedars-Sinai, one of the top cancer facilities around. Believe me, his doctors have hope! We all need to hold on to the hope! I hope this message finds you and your twin in good health and spirits!!!I will pray for you, and all of us who are affected by this disease.  Together, we can beat this. Many blessings,

Diane

Arushi Pandey
Posts: 1
Joined: Mar 2018

I am requesting any help or any sort of miracle happended to anyone with the same disease. My father has been disgnosed with GBM aging 57 years and was operated last year july 2017 and since then he has been keeping well. We have made our way to Dr. Yeshi Dhondhen in India for his miraculous work in Cancer treatment using Tibetan medicines. Also,We pay visit to oncologists on every 28th day for temodar dosage. His MRI reports werent that good after 3 months of radiation as suggested by Neurosurgeon but on Spectroscopy Oncologist said the reports are fine and would observe till the completion of 6 cycles of Temodar.

Each day is full of anxiety and reading the posts makes me more anxious as to what should be my thoughts. My mother is always there for him puts in 200% efforts supplying him all kinds of juices and ways to keep him going and fight the tumor cells.She prays everytime, smiles outside but remains nervous within.

Please throw light on the Survival rates record as it says 12-18months but I want to know have there been patients who survived more than this? If yes, what was your diet regime,your thoughts, which hospital you went etc. 

With all hopes and positive thoughts, i would like to know off someone who had been there since years and doing fine. i definitely want to talk to them 

 

Help please.

robwalk64
Posts: 4
Joined: Feb 2016

Keep your hopes  up I was diagnosed  with stage 4 GBM in

Jan 16 and I am still here get mri every 3 months  tumor was mostly  removed in August 16

Kevinmsr's picture
Kevinmsr
Posts: 2
Joined: May 2018

My wife and I were married in Oct 2017, after I had lost my prior wife due to breast cancer and heart attacks several years earlier, and 5 months after I was newly married, happier than i could have imagined, my newly beloved bride was diagnosed with Glioblastoma Stage 4. I mean really WTF! I planned on never marrying again due to the tramatic effect my prior spouse's death had on me, then several years later, I met my sweetheart and on the first date, I told her that I would marry her. It was absolutely heavenly, a fantasy love, a one in a billion love that you would read in a love novel, and now the doctors are telling us we have 6-15 months. Really, really, am I hated by God that much, that this would happen to us, and we couldnt even have a year being married before this devastated us, to me, burying 2 wives in 5 yrs. I know it is not about me, and it is all about her. I cater to my beloved's needs 20-21hrs per day full time. I am her caretaker and do not leave her side, but many people dont realize the horror, the nightmares I have of her being gone already and myself crying out for her, looking for her, even though in the nightmares, i know she is passed. How do you deal with something of this magnitude, when you give everything you have, I mean everything you have, and you have no other family other than your wife, and you move to another state and then being told that you would lose her in counting down the months, not the years, and at such a young age of 45, I mean really, really, wtf!!! I am I am not a good person, but does God really hate me that much to punish me, us, like this? I know beyond the shadow of a doubt that He exist, and that He loves, but am I the only excluded one, that He decided way in advance to punish and not love? I gave up my home, my neighborhood, my city, county and state and moved 1,000 miles away to start a new life with my wife, and now I am going to lose everything. Are the nightmares I had years ago of living alone in the streets going to come true now that I am going to lose my wife someday because of the actions I took and will take? I cant even begin to say how much I hate all of this death and cancer and bs. My beautiful, beloved, the chemo and radiation on top of all the crap that she is going thru. This world isnt what people claim it is. It really really sux and now I have to watch the person I love most in the world, the only perrson I have, die slowly on me, and for a 2nd time in 5 years to go thru it all alone again! I dont even know why I am typing here, maybe to get  it off my chest or to fined a sentence of hope, which I have almost none. Faith. I know God exist, I know 100%, no questions asked, and no one can change my mind that He doesnt exist. The difference is I believe in Him because I know He hates me and is punishing me, because lady luck is not that F up to have me go thru this twice in 5 yrs. Sorry to rant. I would delete this because it is too long and messed up, but I dont know why I am not deleting and just keep typing. later people. there is no words that can help me. I just need to care for my wife because I adore her and she deserves that love and caring for, because she is my hero and my treasure.

BrascoLaw's picture
BrascoLaw
Posts: 2
Joined: Apr 2018

I know you say words can’t help you & I don’t blame you at all for hating the world right now. Cancer sucks for everyone, the person who has it, the person who cares for them, their family and their friends. My suggestion to you is to not have her undergo radiation or chemo until you first try alternative treatment. Radiation does kill cancer cells, but it also kills the person with cancer ... maybe not right away, but eventually the radiation damages healthy brain cells, it debilitates you and kills you before the cancer does.

Google “alternative treatments for brain cancer” and read about the benefits and success stories of natural products, treatments, regimens, protocols and diets that have been proven to work ... without any radiation or chemo. Oncologists will not support this decision because their entire job (and livelihood) centers around radiation and chemo, and they will oppose anything outside of that box. If everyone with cancer switched to alternative treatments and refused radiation and chemo, they would all be out of jobs.

Your story is heart wrenching. I cannot imagine how you must be feeling. Please do lots of research and trust your instincts. There are less harsh treatments other than pumping your body full of toxins with radiation and chemo.

peterz54's picture
peterz54
Posts: 343
Joined: Feb 2012

Prof. Seyfried is known to some here for his work (as a researcher) with GBM patients in applying strategies to suppress and kill cancer cells

In this 2017 talk Prof. Seyfried discusses an updated metabolic strategy, which he calls  Press-Pulse.  He explains it starting about 13:15.    Discussion about GBM starts about 8 minutes in.

https://www.youtube.com/watch?v=3TZnjC7SR_w&t=309s

The paper can be found here:

https://nutritionandmetabolism.biomedcentral.com/track/pdf/10.1186/s12986-017-0178-2?site=nutritionandmetabolism.biomedcentral.com

 The basic idea is to reduce glucose by diet (with some calorie restriction) as a baseline (along with stress managment) then periodically administer glucose and glutamine inhibitors and hyperbaric oxygen. Low dose chemo or radiation can also be used. 

There are still many unanswered questions in the area of metabolic therapies but it is starting to become more recognized.  

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