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Brain cancer(Glioblastoma grade 4)

mschaben's picture
Posts: 87
Joined: Nov 2003

My mother was diagnosed with a brain tumor in June. Two days after her diagnoses she had brain surgery. They removed it in pieces. It was the size of the bottom of a 32oz. cup. They didn't get it all. She came out of sugery well. She does have some side effects of the tumor. Her memory and thought process isn't the same. She underwent seven weeks of radiation and chemo by IV every eight weeks. Then just last month the MRI showed that the tumor was already growing back. They put her on a high dose chemo pill called temodar. Just had another MRI two days ago and shows that the pill has helped shrink the tumor or slow it down. The worst part is she will have to continue the chemo pill five days on and twenty-eight days off. This treatment along with the cancer itself is making her very very tired. The doctors all say that it is normal considering all the circumstances. The most frustrating thing is that the cancer will always grow back. If anyone else can relate to this in anyway please feel free to respond back. Thanks.


TAremote's picture
Posts: 57
Joined: Nov 2003

Yes,I can relate to your situation. I too have Glioblastoma, mine is stage 4, and is located on the occipital lobe which controls your vision. I had my operation on Aug 21st, where they got 80% of the tumor. I completed 6 weeks of radiation along with chemo during the same time frame. My Chemo was also tmeador. My first MRI after treatment showed the tumor had not grown that much. I go back next week for another MRI and floowup visits with the Onocologist, and Neurosurgeon. From those visits we will set another treatment plan. This type of cancer is a hard one to get rid of, but remember that everything the Doc's tell you are just averages. Many people have beaten this cancer. Keep looking for new treatment, and let your Onocoligist know about what you find. There are many trials out there that might help.
Keep the faith, and God bless you and your family. If I can help, please let me know


Posts: 1
Joined: Jul 2010

My cousin, was recently diagnosed with the same and is going through radiation and chemo. The doctors said it was inoperable. All the stuff I've been reading up have been very discouraging. Thank you for your words of encouragement.

Posts: 2
Joined: Sep 2010

I was just recently dx with a GBM in the left occipital lobe.I had surgery to remove it. Will be starting treatment soon. I am wondering how you are doing at this time, if you've had any recurrence? Have you had success with any other treatments?

Posts: 3
Joined: Aug 2011

My Person Email is sweetokielady72@yahoo.com you can email me there if you wish I would love to stay in contact with you Tom. You dont meet alot of people out there who have what you and my mother have I need your positive attitude and anything to help my mother stay alive believe me ty ty ty from the bottom of my heart. I am a christian so I do have faith and hope that is all I have so is my mother and sister. I will pray for you as well. GOd bless you and email me anytime it would be easier through my personal email. I use to live in Oklahoma that is why it says okielady I am now in Amarillo, Tx I love it here. God bless you we will keep up the good fight.
God bless you and your family.
Brigette Lee

Posts: 1
Joined: Aug 2011

Hello Tom,
My brother is suffering from glioblastoma. He had his surgery, all the tumor is out and he is currently under chemotherapy.
Is there anything that you share that would be helpful? diet or anything else that helped you
Thank you so much

Posts: 4
Joined: Aug 2011

My father was too diagnosed with Glioblastoma Grade 4 he has since radically changed his diet.
We have followed lots of other diets of people who have had same tumour, One guy who got rid of it, and also didn't do much treatment as he hated it.
We have my father eating
Organic Cottage Cheese with one tablespoon of Flaxseed Oil (very high in Omega 3) Lots of brain tumour victims use Flaxseed Oil in their food (Salads, Yoghurts, Cottage Cheese etc)
So my father eats that once a day,
Whilst also taking the following
Inner Health Plus capsules
Hi-Strength Coenzyme Q10 Capsules
Betacarotene vitamins
Magnesium Forte 4000 Capsules
Fish Oil Capsules
Vitamin C Powder (In Juices, Smoothies Etc)
Super Greens Powder also in Juices etc.

We also follow good diets out of a book called Shattering the Cancer Myth Which has about 10 Pages of Different Foods, Drinks etc which are good for cancer.
My father is also getting into meditation
After having his tumour removed 100% He has not been as active as he is now in about 15 years and He hasn't started Chemotherapy or Radiation Yet and Isn't very keen too,

Here is an article of the man who's diet we are following.

Hope this helps!

Posts: 1
Joined: Jun 2018

Hi- I am wondering how you father is doing? Is he still living? Did he get rid of the cancer through diet change? My dad has recently been diagnosed with stage 4 glioblastoma and he isn't doing chemo or radiation. He has changed his diet and is taking a ton of vitamins. Thank You!

Radhika Divecha
Posts: 2
Joined: Sep 2011

Hello Tom,

Its heartening to read that people have beaten GBM! MY 10 year old daughter has a grad IV GBM too and has been on chemo for a year (Non operative) she has had radiation too and now we are still undergoing another 6 months of chemo (Temodol). But its a fact that we are living in the constant fear that the tumor will start re-growing at any point in time and we may not catch it in time. I'm looking for a miracle too!


Posts: 1
Joined: Feb 2013

Hello Radhika,

Just wanted to check the status of your daughter, I have a nephew of the same age diagnosed with GBM IV in the pontine.

Any information would help




Posts: 4
Joined: Feb 2013

Have your neuro onctest your tumor for MGMT Methylation. If you tumor is methylated, it will be more sensitive and it's DNA more easily damaged by the temodar.

Posts: 1
Joined: Mar 2013

My husband was diagnozed with GBM 4 last December.  He has has 42 days of Temodal and 30 days radiation therapy.  Since then he has had another round of 5 days Temodal.  His quality of life is dreadful - he suffers from complete and utter exhaustion, poor sight, and sleeplessness at night. His prognosis is equally dreadful according to the doctors.  We have recently signed up for an Advanced Homeopathy Protocal which has not yet shown any signs of improvement.  Maybe it's too early (10 days so far).  However, the Homeopathy Clinic promises better results were he to discontinue the Chemotherapy.  This is a diffucult decision to make.  Does anyone have any experience in this field?

maria isabel
Posts: 19
Joined: Dec 2012

hi there,

my mum was diagnosed on the 3rd of december, since then she has had surgery, radio and chemo, she is about to start her 5 days a month temodar. In DUKE university (USA) they are taking patients for ADN vacciantion, they are very helpfull, Also my mum has been doing very very well since taking extra suplements, like GRAVIOLA, CURCUMIN, KRILL OIL, MUltivitamins....and a bath with Salt every day, 2KG of marine salt for a full bath or 1 KG for half bath.

Also if his tumor was METHOLISED (in the biopsy) he might be better on AVASTIN? do not give up, there are survivors with GLIOBLASTOMAS and what they eat can make a difference too! my mum now hardly eats bread, flour, pasta, biscuits....and all those things that nutricionally do not give her anything, everyday we liquidised fruite and veg, she eats lots of fresh fruit, fish, organic chicken, alkaline water.....no sugar (sugar does nothing good to your body, is all processed!) and she looks better now than ever, she skin in 3 weeks of eating so healthy is brilliant, her blood test are so good that the oncologist says is like she is not having chemo....

you can email me if you wish yeyes29@hotmail.co.uk

Good luck

isabel x

Posts: 2
Joined: Nov 2014

Hi Isabel,

Today is 11/21/14.  My husband was just diagnosed with a glioblastoma grade 4, which he had removed on th 11th of this month.

We are getting everything ready for his radiation and chemo to start the first week in Dec. I am very concerned about the effects of this treatment on his overall health.

1. Is your Mom still alive and still receiving treatment?

2. Did your medical oncologist approve all of the subliminets and diet changes?  we will be on the same chemo cycle  with the Temozolomide?

3. The bath with marine salt everyday, what is that for?

4. You mentioned the tumor being Metholised?  i guess i am assuming they know that and have chosen the better of the 2 chemo medications.  is this a bad assumption?

5. You also spoke about a clinical trial out of Duke.  is that still happening and did your Mom get to participate?


Thankyou so much for posting
















Posts: 6
Joined: Dec 2014

Hello Colleen, I have chosen your post because of similarities and our time frames. Often the posts I can relate to are older and the people are sadly no longer with us. My husband was diagnosed end of October 2014 with a tumor in right frontal lobe and underwent a 6 hour surgery on November 14. The surgeon had told us from the MRI prior to surgery that he thought a 99% chance that it was benign and had been there a long time, but somehing "woke it up, and made it angry." and it should come out asap because his ability to perform his work duties was being affected due to left side mobility and dexterity problems. When he came to the waiting room and told me it was not as he expected and was in pieces and was able to get it all working under a microscope. He spent 3 days in ICU and 2 days in a room and from there to a rehab facility to help him regain strength. A second MRI showed no new growth but a few blood clots from the surgery. The hospital's pathology could not positively diagnose it and sent the specimin to Mayo clinic where 10 days later, the report came back as a Gliosarcoma. The surgeon said it is a rare varient of GBM, primarily affecting males in 50th, 60th. and 70th. decade of life. He said it is to be treated exactly the same as Glioblastoma with the same prognosis, which is 6 months without chemo and radiation and possibly 12-15 months with, but no longer, and it WILL come back and when it does, it will be with a vengence! He is due to come home on January 6 and our journey for treatment begins.

I have contacted Vanderbuilt oncology department and will be making an appointment to drive the hour there for a consult and possibly a clinical trial if he qualifies. No way to know without another MRI, but this BEAST may already be coming back! The medications he is currently taking is Dexamethasone 3 mg. 3x a day, and an anti-seizure drug.

I would appreciate hearing from you and staying in touch. Another wife who is experiencing a similiar life altering situation is so important to me right now. We have our loving family, our pastor and church friends, but none of them can begin to relate to this horrible nightmare that life has dealt us. Additionally, we are raising a 5 year old granddaughter since she was 6 weeks old and have legal permanent custody of her. She is the sunshine in our lives, loves her Papa, and he adores her and wants to live as long as possible for her and for me.

Posts: 1
Joined: Feb 2015

I have just found this site.  My husband went in for a headache on January 23, found the tumor on the 24th and had brain surgery on the 26th.  50% was removed. Unfortunately the tumor is deep in the very center of his brain.  We are going to MD Anderson on Wednesday for a three day consultation and the start radiation and chemo.  I also have a wonderful family and a great support system but like you mentioned none can actually relate.  I would love to have another person to talk to that is going through the same thing.  My name is Rosemarie and we live in Virginia.  Thanks.

G_I_Jane's picture
Posts: 1
Joined: Apr 2015

Hello Rosemarie and SteveD

My name is Stephanie. I was diagnosed with a stage 4 glioblastoma at the age of 28 they did surgey and were not able to remove it all. I went through 3 months of aggresive radiation and chemo 5 days a week mon-fri with sat and sun off. I was warned I only had a 25% chance of the treatment working and at that point they gave me a 6 month life expectincie. after I beat all odds and surpassed the 6 months I got phenomia then was givin another 3-6 months and yet still I am here, I was told 99.9% chance I would never see my 30th birthday, I am now 33 I have been fighting this for 5 yrs but I am still here. Grant it it has not been easy at all Considering this type of cancer is considered non cureable, my oncologist says I have beat all odds. He seams to think I am a walking miracle. That being said I have continued to reseach just exactly how lucky I am. It turns out the general amount of people with the same type and grade of cancer I have responded best to the aggressive treatment in the begining if you are strong enough to even be considered for it.  Be at mind sweetheart this is my expirience, everyone reacts different to the treatment. I now do chemo 2 weeks a month with Temodar. In the begining they had me doing the same chemo just through IV now I am taking it Orally at home but I do go in for IV fluids and nausea meds IV before starting my oral chemo from home,which is much more comfortable. I do have several after effects from the treatments but your husband/ friend has a while before  these things if he has them at all. my point is dont loose hope, be very supportive and opptimistic.My thoughts and prayers are with you both and if you have any other questions feel free to ask. best of luck! Stephanie

Posts: 6
Joined: May 2013



 I am sorry to hear, Don’t give up hope.

My Uncle was diagnosed with GBM in 2011 at the age of 50, he underwent surgery, radiation and chemo. Just after 3 months he received treatment Symptoms worsened with recurrence of tumour, heaviness of the head, with loss of recent memory. Then we came across the new therapy called SPMF. This treatment is a non surgical process and is not painful. For the past 15 months there is no recurrence of the tumour. This treatment has yielded good results and a lot of improvement in him. This treatment might help in your husband's case. I hope you both find more comfort.


For more details check there website: http://www.sbfhealthcare.com/

Posts: 1
Joined: Nov 2014


My father has a recurrent GBM-O. Could you please provide more information on this therapy. Where did you Uncle take it? Who treated him? Possible share your contact information. I would very much appreciate that help.


Posts: 6
Joined: Dec 2014

This is truly exciting! Where did your Uncle receive treatment, and what are the costs?

ankit khanna
Posts: 1
Joined: Dec 2014

Hey friend,


Hope you are well


Please help me as my father is suffering same conditions and m really worried. Hows ur uncle and where he took treatment any info would help me lot..





Posts: 2
Joined: Nov 2014


Myhusband just had a grade 4 glioblastoma removed on 11/11/14.  We are preparing to start the radiation and chemo treatment using Temozolomide.

After reading your post i am more concerned than ever about the effects of the treatment.  I noticed you had a response from someone named Isabel.  i was wondering if you tried any of her suggedtions , with the approval of the treating oncologist?

 We are also investigating Homeopathic remedies.  Did you try any, with any success in eradicating the cancer cells or success in helping your husband with the side effects?

Please let me know how you are both doing .











Posts: 3
Joined: Jan 2015

Hi Tom,


My friend in Berlin just had the surgery to remove about half of his tumor. He starts chemo on Thursday. He's 57. I'm told he is having trouble with motor skills, maybe stroke like symptoms a week after surgery. Anything like this happen to you?

Also, what alternative treatments are you aware of and where can he get information about them.


Thanks Tom and good luck!   Steve

Posts: 3
Joined: Sep 2003

On January 7th, my mom will turn 69, like your mother, she also has GBM Grade IV. She just celebrated her 5th year of life following her first craniotomy. My mom still lives alone and is very independent, although she can not drive any longer. She had her 1st craniotomy 11/97 followed by 6 weeks of radiation. Then we went to UCSF where she had the gamma knife treatment. She had her 2nd craniotomy 3/03. In May we went back to UCSF for another consult. They decided to put her on Temodar late May. She just finished her 7th round of Temodar and is doing great. According to oncology, she will be going off the Temodar within the next month. My mother has done terrific on the chemo drug. She is still living on her own and taking care of herself without any outside assistance. Her doctor's do not know if it's the Temodar or her great outlook on life and her positiveness that keeps her going. Please tell you mom to have faith and don't EVER give up, I truly believe this is why my mother has made it over 5 years now! Good luck and best wishes to you and your family. Denise

Posts: 2
Joined: Nov 2005

Brilliant!! Well done o her and you.

Posts: 2
Joined: Jan 2004

Well my husband just found out he has the same thing.I'll be praying for you.I don't know alot about it,but the doctors said it was'nt good,and he has brain cancer.

TAremote's picture
Posts: 57
Joined: Nov 2003

Parryland, What is the latest on your husband?? Where in the brain is his tumor? I also have stage 4 GBM, diag last July 2003. Don't give up hope, and don't stop trying...

God Bless

Posts: 4
Joined: Jun 2004

about 11 months ago I had a sisure the glioblastoma multiform tumor 4th grade got to me, had a brain opperation, then radeation & timidor every month now and the timidor sometimes stops working after a yr, thats why the drs. want to change it. untill then I didn't know I had anything wrong (in one split secound your whole live changes). Now I live for today and get enjoyment out of each and every day, becouse as they say - God never prommesed you tomorrow.. good luck Brad Heath

Posts: 1
Joined: Jun 2004

Hi, my sister was dx with GBM, April 29, 2004. On May 10 she was to start her radiation treatment and Temador, she took her temador at 11:00 am and before she could get to her radiation trt at 1:30 she had a seizure on the way to the hospital, so ended in urgent care and was admitted to the hospital, once it was under control, they did start the radiation trt the next day, they doubled the dose and did it in 3 weeks instead of 6. After a week in the hospital they moved her to a SNF where she is still, getting occupital thereapy, and making slow progress since the completion of the radiation therapy. I think our goal for her now is to regain some functions, so she could come home. They are having a hard time getting her meds at the right level it seems. She now has lost on the hair in the front of her head, so she had the rest shaved off. She is having a hard time swallowing, slowly get back to regular foods, but still does not want to, or can't swallow her meds. She is on Dilantin, and deacdron, antibotics for a UTI. Her speech and motor skills have been affected. Anyone with similar situation? What can we expect? Will she regain these functions? Thanks Gail

Posts: 1
Joined: Jul 2004

Don't do well w this computer stuff... my mom was dx w possible brain tumor on June 1 2004 same day ct and mri confirmed tumor surgury June 5 2004 got most of it, Path report back June 9 Malignant,GBM grade 4 no cure. Wow that was an awful week. Mom has been trhu 4 weeks radiation (5 days a wk) Temodar 7 days wk. Very tired and weak. HAs trouble w word finding. Knows what she wants to say but cant find right word. Numbers hard to recognize, can't read well, no longer allowed to drive. Require 24 hr care do to confusion. Also very grumpy from steroids I think. Has much faith in God. In good spirits. She is a strong lady. She is 50 and has 7 wonderful grandkids. I will keep you all in my prayers. Remember...God has a plan and we only know a piece of it. He doesn't give us more than we can handle. I know that everything will be ok no matter what happens...God can take the cancer away or he can my mom. Either way my mom is going to be ok! I believe that!
God Bless

Posts: 3
Joined: Jun 2004

Dear TAremote,
My husband was diag with GBM Gr IV, on 5/3. He is 47. The tumor was located in the left temporal lobe and was completely removed. He began radiation treatments on 6/1/04 coupled with daily doses of Temodar, for 6 weeks (radiation and temodar combined/weekends off). So far, so good. How is everything with you?
Good luck to you.

Posts: 1
Joined: Aug 2010

Hi Tom,

I was just Googling Grade 4 glioblastoma and I came across your postings here. So encouraging! How are you doing? How has the process been for you? My mom was just diagnosed with the same thing.

Julie Linehan

stayingcalm's picture
Posts: 654
Joined: Feb 2007

I suggest you check the dates on threads, it will save you disappointment if no one answers - and I don't mean this in a bad way. People get better and move on, and forget to check back on old threads, etc.

Posts: 1
Joined: Oct 2004

I just found out today that my 19 year old nefiew has a glioblastoma grade 4 as well. We are all devastated. He started off with a seizure a couple of weeks ago. MRI showed a mass and he had surgery last week to remove it. It was encapsulated and they felt they removed it all, so we of course were all very hopeful. Unfortunately the biopsy result came back today and he was told that it is the worst type of tuour to have. He will soon be starting chemoo and radiation. The hardest thing about all of this is that I am a healthcare professional and I don't know what to say to help support my family members. I mean I do it all the time at work, but this seems different now. I feel that whatever I will say will not be enough to comfort them. This really sucks. The literature says that at a young age (less than 40 yrs) the is a 50% chance that survivale will be greater than 18 months. I just can't imagine living each day wondering when death will occur. How are you guys coping and dealing with all of this?
God bless you all.

momsworld's picture
Posts: 135
Joined: May 2010

My daughter has AA3 brain cancer, alittle different than GBM4,but still a high grade brain cancer. Dealing with the 'not knowing' part is hard. My daughter was diagnosed in March 2010 and it has been a up hill battle ever since. I cried everyday for almost a year and now I am just sort of numb. People tell me to enjoy every minute with her(which I do do), and to be positive but, it can be so hard to be positive all the time. Sometimes I feel that time is slipping away and that everyday brings us closer to the end. I continue to pray for God to take care of her. I know he will, I'm not sure if it will be here or in heaven though. My daughter is 13yrs old and she hasn't had a chance to experience things in life yet, like her first kiss, drivers license, etc. If I could take her cancer away and give it to myself, I would. This is the hardest thing that we have ever had to go through and it is not over yet. Please keep in touch and let me know how your son is doing.
I will pray for your son.

Posts: 3
Joined: Aug 2011

Hi my name is Brigette I live in Amarillo, Tx! My mother is 64 yrs old and is in Tulsa, Oklahoma right now and has been receiving her treatment there for sometime for Glioblastoma (Grade 4) She was diagnosed here in Amarillo,Tx in 2011 they removed a tumor that was right next to her brain stem in her Cerrabellum that is where the one is now where they are treating with a chemo pill and radiation. She is at Cancer Treatment Centers Of America in Tulsa, Oklahoma I would suggest that to anyone here that is in need of treatment for cancer. Before she went there It was like ok you have this long to live and they kept giving us shorter life expectancy times. Up there in Tulsa their great they treat the Mind, Body & Spirit and that is what they are about! Her Oncologist is #5 in the U.S. I met lots and lots of patients and they all love it there and said they were alive today because they gave them hope and also the treatment they are receiving there. If my mom was here I dont think she would be alive today just my opinion. I deal with it through support of God,family and friends and taking it day to day. I dont know what tommorow holds only God knows. So I need to enjoy the time I have with my mom today and every day after that as long as she is alive. They can feel when we are down and they dont need that they are going through enough. My mother is all of our best friends Ive been through somethings,but nothing nothing like this where tumors can pop up at anytime suprise here it is. That is where my faith comes in God is in control he knows how long she has I dont he gave us life and he is the only one that can take it away! My Sister is 41, I am 38, My Brother is 33 then she has grandchildren. So I know this is rough I will keep you in my prayers. She is doing 30 rounds of Radiaton, a Chemo Pill, Phyical Therapy, Occupational Therapy, Acccupuncuture, see as Diatietian important.Vitamins,Minerals and other Supplements. She has had a tumor that is 2 inches big in her cerrabellum again from front to back but the radiation has been helping along with the chemo pill they might due surgery only if it hasnt'shrunk enough we will have to see. The Doctor talked to me by himself about her life expectancy only because I asked they never bring it up unless you ask about what the life expectancy is he said 12-24mon but he said hes not God hard to say I Respect that answer.That is the longest time frame of life expectency we have ever gotten from any other doctor believe me .If you ever want to look up Cancer Treatment Centers of America I think that places email address is www.cancercenters.org if not I can find it for you. I will answer anything I can this is a scary disease,but God is in control and he decides what happenes. God bless you and your family and my prayers go out to you!
Brigette L.
Amarillo, Texas

Posts: 1
Joined: Jan 2013

Hi! i know it's been a while since u posted ur story. my mum is 48. she was diagnosed with oligodendroglioma grade 2 3 years ago in Dec 2009. she underwent surgery and then 30 sessions of radiotherapy. she was doing well since then. i'd say we had great 3 years even though we had our ups and downs and she needed 24 hour care. just few weeks ago we got the terrifying news that her tumor is back. and now it's more agressive and higher grade (glioblastoma grade 4). it's in the same are where ur mums tumor. so surgeons wouldn't do surgery and she wouldn't get radiotherapy, because they don't think that either of them would do any good to her. so our only hope to stop or at least slow it down is chemo. she started Temodal today. the plan is to take that for 5 days every 28 days. they don't think she's fit enough for chemo so thumbs up so she will be strong. doctors wouldn't really fill me in about everything so i'm trying to find out online as much as possible. hope ur mum recovered and is doing great now.

Posts: 6
Joined: Oct 2011

my daughter is 38 and single. 9 days after buying her first home and moving in i noticed some memory issues. she was being treated for an inner ear infection and a recent ct scan showed no mass. however i took her to the er on 9/6/11 and they did an mri which showed a 6 cm tumor in the fluid between the two sides of the brain. her doctors cannot find any other instance of the tumor being in this location. i completely understand what you are saying about coming near the end. i try to stay positive and pray and cry a lot. i have begged God to take this from her and give it to me. No parent should have to go through this with their child. She is doing well and is in the 4th week of chemo and radiation. They considered her tumor inoperaable.

I hope your daughter is doing well. I just wanted you to know how much i can relate to your pain.

Praying for both of you.

Anonymous user (not verified)

This comment has been removed by the Moderator

Posts: 1
Joined: Jul 2011

my dad just had a tumor removed from his left temporal lobe fortunitly it didnt effect his speech like the surgen thought it would. It was 3cm and he's on stage four the doctor was able to remove all of it but he is still starting chemo and radiation. my family and i are thankful he still with us but i would like some opinions on how to help my dad go through these treatments. if anyone can relate to this please feel free to respond back we can use all the help we can get so we dont go into this so blindly.


Posts: 26
Joined: Nov 2010


I was dx 5-1-11 with GBM 4 and had a tumor resection on 5-3-11. I just finished my 6 weeks of radiation and Temodar. The hardest thing for me was being to tired and weak. I had to face the fact that I could not get through the days with out at least 2 naps. People would want to come over and visit and I would let them my naps are this time, and this time. You can come inbetween. Everyone was very understanding.
Its been 4.5 months now since my first surgery. I still like to lay down for a little bit in the afternoon, most of the time I just rest. But this helps me get through the rest of the day when my husband gets home from work.

I also made some friends at the radiation treatment center. That was helpful, because it gave me people to look forward to seeing and we were very encouraging to each other. I felt that by the time my treatments were over, I could not believe it had already been 6 weeks.

I hope this has been a little helpful
God bless, Lora

Posts: 1
Joined: Oct 2015

Hello Lora and everone,

I am new to this page and am so greatful for everyone here. My prayers go out to all and your families. My dad is one of the healthiest people I have ever known, so you can imagine our shock as he was diagnosed at age 64 with GBM stage 4 end of July 2015 after 2 small seizures. The tumor was successfully removed yet he was given maximum 9 months to live.

He was started on very aggressive radiation in conjunction with chemotherapy orally for 6 weeks (5 days a week) and will be finishing week 5 tomorrow. He has been lucky to be able to eat normally and don't struggle with naseau for the most part and had little fatigue. The biggest problems seemed to be slight trouble with hand-eye co-ordination, memory loss and some cognitive processes. Although he looks much better since the removal of the tumor, things seem to get tougher now.

As I understand from the Oncologist the decrease the target for radiation every 2 weeks to a smaller area of the brain to make it closer radius to the tumor. Week 5 is almost over and he seems so much weaker, more tired and struggles walking more and more. I am so much more concerned after this week. Is this normal for the last weeks of radiation to have this much of an effect?

He is starting on very intense chemo as well after this is done (I think one week a month for 3 months) and we don't have a clue what to expect. As far as I understand this chemo will be very hectic on his body. The doctors say they can only truly give an idea what is happening after 6 months so we can't do anything but wait and pray.

If anyone has some help on what we can expect through this process, please help. We are realistic yet hopeful, and would like to make this journey as comfortable as possible for my dad.

Sending a prayer for you all God bless!


Posts: 2
Joined: Dec 2011

My husband was diagnosed with grade 4 glioblastoma in July. He had surgery in August and just finished his 6weeks of chemo and radiation. The new MRI shows no sign of the tumor. He has had to keep taking decadron for swelling and last week started his year of Temodar.Our journey although scary has been blessed except for the personality changes. He is so angry and our kids don't understand why most days I don't either. Just wondered if anyone else has had experience in this area.

4theloveofmysis's picture
Posts: 248
Joined: Apr 2011

The decadron will cause personality changes.

Posts: 232
Joined: May 2011

Yes, it could be the Decadron. When our son was taking it, at times up to 24 mg, and it was hard. We called the pills the "Green Meanies." I would recommend talking to his doctor about when you he can begin tapering off the Decadron.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Wow, I didn't know that someone could take 24 mg of decadron. That sounds like a lot to me. David took 4 mg, 4x a day, for 4 days. Now he's taking 4 mg. 3x a day for 4 days, and so on. The drs are trying to taper off, but I have serious misgivings. I'm afraid that David will start having all those issues that he had before his last BBBD treatment--and then they escalated so much after the treatment when his brain started swelling.

We haven't noticed any really bad side effects from steroids. David said he felt annoyed and crabby sometimes, and his joints hurt off and on. The biggest side effect has been his insatiable appetite, but he's so skinny that his increase in appetite and eating hasn't become a problem...yet.

I am really worried about his taking less steroids. The doctors told me to watch him very carefully as we started to taper off, and to let them know if David starts having headaches or if he doesn't talk very much or if he has any behavior changes. (When he has swelling and edema, it really impacts his speech.) It is so hard for me to be observant and not over-react. If David is tired and doesn't really feel chatty, then I wonder....if he has a headache---and he's had headaches almost nonstop since he was diagnosed in 2009---then I get really worried. I can't tell if it's from tapering off the steroids or if it's just David not feeling really great....I wish there was some definitive test, like a blood test, that would show if David is having trouble coming off steroids. The drs told me the way they tell is by his behavior and symptoms. And that's scary to me because it's basing a diagnosis on opinions.

When I told the drs how David was having these "frozen" episodes, they immediately said "seizures." I didn't think they were seizures and I was bothered that they were going to diagnose and treat David just on the strength of my description of how David was acting. And it turned out that it wasn't seizures but brain swelling. Luckily they didn't have time to put David on more anti seizure medicine before they realized that it was not seizures.

David is slowing fighting back to where he was before that last BBBD treatment. Today is one week since we came home from the hospital. David has made incredible progress but it's still really rough. His eyes look really bleary and tired, and he feels lousy all the time. And we are rapidly approaching the time where he will be due for another chemo treatment of some sort. I know that his tumor isn't just sitting there dormant while David recovers from the BBBD. But I don't know if David can handle another chemo treatment either. I called his NO and asked what their plan is for David. They haven't gotten back to me yet.

I love having David here at home with us, and he is making the best of it, but I know he is longing to be home in his lovely apartment in Portland. But he knows that he's not ready to go home and be on his own yet. We were hoping that he could go home by the first of Feb. but he still needs to do some therapy, and we don't know what shape he will be in after the next round of chemo.

I am just trying to take it one day at a time but it sure is a hard way to live. In the back of my mind is this feeling that right now is just a small window of time, a little lull in the storm, before we will be dealing with some really hard issues. That episode we just had in the hospital was a nightmare that I just cannot forget.....

Love and blessings,

I_Promise's picture
Posts: 218
Joined: Aug 2011

My sister (aa3) was on 4mg four times a day (16mg) at one point when the radiation caused a cyst and swelling in her brain. She was starting to have left side paralysis. This was very scary for me. Should we have started her on decadron earlier? Do another MRI during the tratment? Who knows? Maybe they would have not let us finish the radiation...

All of her neuro symptoms have resolved. Her left arm is as good as before. She is still trying to wean herself off the decadron. We are down to 1.5mg daily.

I believe that most doctors are treating numbers and follow a strict pathway: if my patient has this, do this. Instead of really thinking what is the best for this patient.

Cindy: I am glad that David is doing better and that you are considering letting him go back to his apartment. Even if it does not happen, that means that he is making progress. And you were right: the "frozen" episode were due to brain swelling and not seizures.
When my sister was experiencing left arm paralysis, none of her doctors were really helpful. Finally I took her to the ER, where this huge cyst was found and it led to another surgery. I am not a neuro-oncologist. But it seems that as caretakers we are going to know more about the doctors sometimes. And that is frightening.

chicken2799's picture
Posts: 105
Joined: Nov 2009

When I was diagnosed with AA3 in October of 2009, they admitted me and put me on Decadron first thing due to the swelling in my brain. They said that there was so much swelling that they could not believe I had not come to the ER sooner. They had to wait 9 days to do the surgery to let the Decadron help with the swelling. I had my surgery in Mobile, AL, and they sent me to UAB in Birmingham, AL after they discovered it was in fact AA3. My first visit to UAB in November 2009, the NO decided he was going to start weaning me off of the steroids. This was almost a full month after surgery, and while my Husband and my Dad had me in Birmingham, I threw a fit in the truck, kicking the dash, punching the ceiling, and put all of our lives in danger. My husband pulled to the middle of the road trying to get me to calm down, and my poor Daddy looked so helpless. I don't know what got into me, because up to that point I was the most positive person ever! When we got to the hotel I jumped out of the truck went into the room and locked myself in the bathroom. I called my cousin who lived in Ohio and talked to her, and she finally talked me into coming out of the bathroom. If you look up Decadron, you will see that it is a VERY strong steroid! My biggest fear throughout the whole time of my treatment was that I would keep doing things that were so out of character for me, and make my family despise me. They all told me that nothing I could do would make them love me less. Once we got home from that appointment, we went to a birthday party. It was the night before Thanksgiving 2009, and as soon as we walked in the door of our house I started seeing the little Kaleidoscope shapes that they informed me were seizures. They said if I started seeing them go straight to the ER. I told my husband I was seeing them, but I felt fine and call someone to keep our two year old daughter. My cousin came, and we got in the truck and I remember telling him he did not have to drive fast because I felt fine. By the time we got to the end of our road I asked him to turn on his flashers and drive a little fast because I felt funny, but that I would be ok. By the time we got to the interstate (All this in less than a 5 minute period) I told him he needed to get there as fast as he could something was really wrong. I don't remember anything after that, and when I woke up in ICU on Thanksgiving morning I had had over 21 seizures throughout the night. I was in the hospital for 8 days, and 6 of those days I had at least 20 seizures a day, and nothing they did would control it. My husband kept telling them that he thinks the Dr. at UAB started tapering me off of the steroids to fast. Finally the 6th day they increased my steroid back to before the UAB visit, and the seizures stopped. I do believe the Caregivers do know a lot more about the patient just from giving them constant care. Just be sure that when they start weaning you/or a loved one off of the steroids to pay attention to the behavior like they said. I also have always been a little person, and I had to take snacks with me everywhere I went. Our grocery bill more than doubled while I was on the steroid. Think of it this way though. The more food they eat the more energy and strength they will have. That was the first and only time (Praise God) that I had seizures. I have had a clean MRI for 2 years and almost 3 months. I go back for my 3 month MRI on January 18th, so please keep me in your prayers that day. I will also keep you in my prayers as well.

Caregivers: Like I said, my biggest fear was that I would make my loved ones hate or despise me; just know that it is that medicines and the disease, not the one you love acting the way they may act!

Posts: 2
Joined: Jan 2012

Always know that we caregivers love those that we are caring for very much. We care for you with all our heart and we do not hate you. We get discouraged sometimes but we understand that you are fighting for your life and we will do anything to help you to feel better. My husband is always apologizing to me. I tell him he does not need to apologize to me. I care for him from my heart and his happiness is my happiness. His pain is my pain. I know my husband loves me with all his heart as I do him and nothing can make me think otherwise. Chicken2799- Know that you are loved always.

chicken2799's picture
Posts: 105
Joined: Nov 2009

Thank you so much for the reassurance. You have already been through so much, and I agree you are a very tough Woman! I will keep your family in my prayers! I too think you have come to the right place, there are alot of caregivers as well as patients on here.

Prayers coming your way!

Mobile, Al

Posts: 2
Joined: Jan 2012

My husband was recently diagnosed and operated on. They got all they could see but as you know it comes back. We are going to a consultation with the radiation oncologist today. besides having the grade 4 tumor, he also has a very bad heart. he needs a heart transplant but is not a candidate because of the cancer. He is extremely weak and always cold. I have beaten breast cancer twice and I am a very strong woman but I often run out of encouraging words for him. He looks to be for support and comfort. he always had. I have always been teh backbone of the family. We have 2 sons age 22 and 16. They look to me also. They are both very upset over all this. I am afraid of how weak he will get after radiation and chemo. I know how it can kick butt and he has so little energy. No one knows how hard it is until they have been thru it. Its hard to describe what you are going thru to someone who has never experienced it. I have no other support. I work full time to support the family. I really need a community of friends. Any encouraging words would be appreciated.


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