CSN Login
Members Online: 14

Brain cancer(Glioblastoma grade 4)

mschaben
Posts: 9
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.

Mary

TAremote's picture
TAremote
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

Tom

mpochaw
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.

mardee
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?
Bob

sweetokielady72
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.
Love,
Brigette Lee

leen
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
Leena

JCM2468
Posts: 4
Joined: Aug 2011

Hi,
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.
http://www.healingcancernaturally.com/brain-cancer-cure-testimonials.html

Hope this helps!

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!

Radhika

ankush
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

 

Thanks

Ankush

melevy
Posts: 5
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.

idogi
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

njecab
Posts: 6
Joined: May 2013

 

Hi,

 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/

MsDenise
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

isaiah43
Posts: 2
Joined: Nov 2005

Brilliant!! Well done o her and you.

perryland
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
TAremote
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
Tom

bradheath
Posts: 4
Joined: Jun 2004

Hi
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

glovrin
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

faith50
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
Sherri

katydid74
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.

JulieLinehan
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
stayingcalm
Posts: 656
Joined: Feb 2007

JulieLinehan,
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.
stayingcalm

melansoa
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.
Annette

momsworld's picture
momsworld
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.

sweetokielady72
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

gb26
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.

LHewitt
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.

anaid
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.

diana

sonfollower
Posts: 26
Joined: Nov 2010

Diana.

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

mcgoo1077
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
4theloveofmysis
Posts: 248
Joined: Apr 2011

The decadron will cause personality changes.

connsteele
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
cindysuetoyou
Posts: 508
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,
Cindy

I_Promise's picture
I_Promise
Posts: 208
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
chicken2799
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!

jo5912
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
chicken2799
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!

Michelle
Mobile, Al

jo5912
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.

mighty6
Posts: 47
Joined: Sep 2011

jo5912,

I am so sorry for all the suffering you have been through.
We all know brain cancer could be hard.But nobody knows for sure on each patient's case. My husband was dx with GBM 5 months back. He completed surgery, radiation, now on chemo. All of our MRIs are clean so far. see, things might not be that bad. gross total removal is a big plus. That will buy you lots of time.
Yes, I worry about what might happen with each new treatment, each MRI, each night. We have two young kids. I had to work full-time too to get insurance and get the house running... In a way, all those become my motivation to fight harder and ignore the thing we do not have control with (all the what-ifs.)

I think you've came to the right place. You will meet great people, they are the backbones for their sons, sisters, boy-friends, husbands, wives. You are not alone. I truly believe medical industry is going to have some breakthrough in brain tumor field soon. hang in there, we have hope....

warm regards,
-- Jane

vijithashwin
Posts: 2
Joined: Mar 2012

I was diagnosed with GBM Grade 4 a week back. I already undergone a surgery in the second week of March. The doctors say that they have removed the tumour completely. Thankfully I had no side effects like mobility issues or paralysis after the surgery, which they say that its a very good sign. Infact as of now, I feel almost normal. My radiation and chemo sessions is due to start next week.
I know this tumour is most aggressive. But I feel that having a positive frame of mind is very necessary to fight out this dreadful disease. I have a very supportive wife who gives me the required motivation. Though it is said that the 99%, the tumour will reoccur, Im looking forward at the balance 1 %.
Its really nice to meet similar people across the globe. My motto is dont get depressed at any point and think positively.

Expecting some favorable replies

Regards

Vijith

Scottgri
Posts: 44
Joined: Mar 2012

Exactly 1year afo today I was diagnosed with a brain tumor. Turned out to be a GBM. It's scary, man. Positive strides are being made every day. I had an MRI yesterday, still clean and perfect.

Seek out the kind of treatment that fits you; for me it was whatever it takes which led me to Duke university where I am enrolled in a phase 2 clinical trial using Gliadel wafers (second craniotomy), radiation, Temodar, then more Temodar in combination with Avastin. It's working for me, my initial doc offered me a death bed, I found a new doc. Trials aren't for everybody, but it was, and is, right for me.

I am back to work, feeling great and frankly, often forget I'm the dude with brain cancer!!!

I complete the trial in July and should have my next plan by June. I feel like I am winning. With a math background I came up with the following phrase based on statistics -- "I am a sample of 1". Meaning, the survival rates are scary, so I quit looking, first doc gave me 9 months as an average, I am no average, I am a sample of 1 and I'll tell you MY stats as time goes on, not the other way around. My family liked it so much they gt me a t-shirt that has a big "N=1" n the front and back. Kinda math geeky, but I love it.

You have a great motto, stay positive and strong! It's easy to get shepherded along a path of your docs choosing, don't let them take you in a direction you dont want to go. There is hope out there!!!

vijithashwin
Posts: 2
Joined: Mar 2012

Thanks dude for such encouraging words. This is the kind of support we need. You are strong and have a very positive outlook towards the God gifted life. It is definitely true that whatever doctors say is just some averages and statistics. The inner strength of people is much bigger than these statistics.

This is what I will be following. I have another inspiration round the corner. Im expecting my first baby in August. What more can be a better inspiration than looking towards the new life, my baby. As I said Im looking forward to the 1 % chance that it wont reoccur. Even if its the other way around this ***** wont do anything to me.

I sincerely pray to God that this 1 year of survival becomes 25 years and more.

Scottgri
Posts: 44
Joined: Mar 2012

I do think the percentages are better than 1%, my first doc told my family " they always come back." Well, I am still here to tell you that's not true. I have found many long term success stories. They can't claim anyone "cured" because it's cancer, technically it's remission. Call it what you want, I am tumor free and back to my normal life. Because the treatments are rapidly improving recently, it's hard to see the long term affects of the new stuff simply because enough time hasn't passed to measure it. I'm one year in and expecting to die of heart disease or something other than this 30-40 years form now....haha; sort of.

I had a few people ask me if it was okay tompray for me which surprised me a little in the sense of 'who would say no?'. I happily accept any and all positive thoughts and support. I have some Indian friends who joked they had spread the word and they had "every God covered" which I thought was pretty funny....and cool. My Radiation Oncologist was a spiritual guy too who is onvinced I was sent to him ror a reason. He was my second Rad Onc, the first didn't offer hope; my second one in stayed with, he matched my desire to win and belief it wasn't over yet.

I can't not address the pending new addition to your family, I'm no counselor so all i can really offer is -that sucks, man! And, some hope though my story. This nasty stuff gets all kinds of people at really bad times. My first few months pretty much sucked. Family and friends support and all that as great. I had to steel myself everyday to the realities I was facing; I had to wake up my wife a few times during the night for comfort and reassurance; and she the same thing a few times. Roller coaster we could ot find a way off of. It took a while, but I got my life back.

If you decide to seek out more than the standard course of treatment, rad + chemo, sadly, one of the first questions is "what kind of resources docyou have?". Sadly, because that means money. I found a lot of good things going on in the clinical trial space at Duke University, university California San Francisco, MD Anderson, NIH and Johns Hopkins I recall. I liked what I found at Duke, they offered me options and hope.

Scottgri
Posts: 44
Joined: Mar 2012

I do think the percentages are better than 1%, my first doc told my family " they always come back." Well, I am still here to tell you that's not true. I have found many long term success stories. They can't claim anyone "cured" because it's cancer, technically it's remission. Call it what you want, I am tumor free and back to my normal life. Because the treatments are rapidly improving recently, it's hard to see the long term affects of the new stuff simply because enough time hasn't passed to measure it. I'm one year in and expecting to die of heart disease or something other than this 30-40 years form now....haha; sort of.

I had a few people ask me if it was okay tompray for me which surprised me a little in the sense of 'who would say no?'. I happily accept any and all positive thoughts and support. I have some Indian friends who joked they had spread the word and they had "every God covered" which I thought was pretty funny....and cool. My Radiation Oncologist was a spiritual guy too who is onvinced I was sent to him ror a reason. He was my second Rad Onc, the first didn't offer hope; my second one I stayed with, he matched my desire to win and belief it wasn't over yet.

I can't not address the pending new addition to your family, I'm no counselor so all i can really offer is -that sucks, man! And, some hope through my story. This nasty stuff gets all kinds of people at really bad times. My first few months pretty much sucked. Family and friends support and all that was great. I had to steel myself everyday to the realities I was facing; I had to wake up my wife a few times during the night for comfort and reassurance; and she the same thing a few times. Roller coaster we could ot find a way off of. It took a while, but I got my life back.

If you decide to seek out more than the standard course of treatment, rad + chemo, sadly, one of the first questions is "what kind of resources docyou have?". Sadly, because that means money. I found a lot of good things going on in the clinical trial space at Duke University, university California San Francisco, MD Anderson, NIH and Johns Hopkins I recall. I liked what I found at Duke, they offered me options and hope.

Eaglewings
Posts: 1
Joined: Aug 2012

I just want to thank you for your en encouraging words. My husband is just beginning this journey. He is 3 days post-surgery and we just got the final path results. The neurosurgeon is awesome and I think we are in excellent hands but the diagnosis is devastating. After reading some real life stories I've decided not to look at any stats. The success stories allow me to remain hopeful and posit e for both my husband and kids. I wish you all the best and pray that you remain healthy and cancer free. God bless you!

Sus's picture
Sus
Posts: 3
Joined: Apr 2012

Hi Vijith,
My husband was diagnosed in September 2011. His tumor was located in the left temporal lobe and his surgery indicated that they got most out. When he was in the hospital, people could not believe he was sick except for the big bandage and shaved area on the side of his head. He just didn't have any after effects at all.
He underwent the radiation and chemo for 6 weeks. He had several different friends take him down each day (except me on Mondays to visit with the radiation oncologist). He went for about 3 weeks of feeling great, playing golf after radiation, going on hikes, walking the dogs. He is a happier soul.
On the 4th week, he started feeling tired, bad taste in mouth and a bit achy. But, nothing kept him down (except for a couple of naps a day).
He is now getting ready to go into his 4th month of Temodar. He complains of the bad taste in his mouth and he still gets tired. Other than that, he attitude is positive.
I have seen changes in him, though. The downside, he is more forgetful and has a cold body. He sometimes has difficulty getting words out. The upside, he is a happier man. He tries to please everybody. He continues with projects he loves, but at a slower pace. I am so thankful to have him with us.
Bob is scheduled for his MRI on Tuesday and I pray that it is still clear.
It is good to hear that you are keeping your positive attitude, no matter the ups and downs.
My positive thoughts will be with you and your family.
Susanne

kulaken
Posts: 14
Joined: Sep 2011

Aloha Mary :

As far as the De bulking on your mothers tumor , mine was also done , not full extraction , the dr's
went for a biopsy and grabbed as much as they could , was diagnosed back in Aug - 11 . with . stage 4 Glioblastoma , Have finished 20 full brain radiation procedures , 5 days a week for 4 weeks ,, that procedure shrunk my golfball sized tumor in half ,, ended in oct last yr ,,

Side affects, was put on dexamethasone , for the edema .. I lost plenty of of my balance , cognitive skills , memory , and other automatic skills ,, i am now 7 months into this nightmare ,, but not quiting for nothing ..

2 weeks ago i underwent a gamma knife procedure , ( focused radiation ) and have had some side affects from it as well ,, ,, but i can tell you this ,, im still alive ,, plugg away daily ,, be the best care giver you can for your mother ,, she needs it , to help get through her fears ...

Good luck ,, im in hopes that she gets her stuff back ,, i lost ,, regained ,, lost ,, many skills,,

but still get by daily ,, HOPE ,, is a great thing !! ALOHA KEN

isaiah43
Posts: 2
Joined: Nov 2005

I have the same tumour well the effects of hsving had it. I was diagnoed September 2011 re severe seizures and no balance and memory and thought process changes. I had removal surgery Jan 2012 then infection and bone flap removela Feb 2012. I am now goin through radio 30 treamnt and oral chemo for 6 months - completely exhausting but hate being so unwell ith a poor prognoisi. However as a Christisn I know it is only God`s prognosis that ounts but it is till wearing me down in ever way.....I do feel very alone in this as it is pretty rare.

postmyviews
Posts: 1
Joined: May 2012

GBM is a hard disease. Some doctors call it death sentence. It is not easy to see someone suffering from it. The only good thing about it is that the patient dies peacefully. This disease destroys the brain with time and you will see the patient going more and more into sleep, then coma, and die in the end.

Sorry to say medical science does not boast of a cure although radiation and chemotheraphy have extended life.

Those who have GBM should think positively. Science has not revealed anything much about this disease. It is like GOD calling you home. GOD could abandon his call anytime and allow you to live. You could be a survivor too !

BE BRAVE AND FIGHT IT LIKE A SOLDIER AT THE WARFRONT !!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network