CSN Login
Members Online: 6

grade 4 glioblastoma

deepwater55
Posts: 7
Joined: Jan 2012

i ha ve just had 80% of my tumour removed last week
i am told my cancer is treatable but uncurable about to begin 4-6 weeks radiation and chemo
i gues my question is is how worse or dibilitating is this likely to make me
i have already lost use of right arm and leg slowly coming back
but i really dont want to trade what i have left foe a very slim chance at recovory
id rath er enjoy what i have left tahan have brain damage be tired and lazy loss of memory
as it isnow i hope to be walking soon and i eat well and im alert and aware
i cant see how even 1 moreyear of life would be worth the trade in my quality of life
any experiences to share as to what i can expect post 4-6 weeks rad and chemo

gary

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

Im sorry to hear of your cancer, glad to hear that you were able to have it removed. We were not that lucky... Radiation and chemo is the only way to slow this beast down. With out it the thing grows like wild fire. Was the loss of your arm and leg from the surgery or the swelling in your brain?
They told us six months to a year down the line that there maybe some forgetfulness. Like when you go to the store and you forget something you went after, then step that up...
Radiation and chemo can make you tired. Rest and eat well. You get a break from the chemo for a month when the radiation is over.Then most do the 28 days off 5 days on. In those days you will be more tired.
Hope all goes well for you. I hope you have good support from your family.And call your doctor anytime you think anything isnt just right.

deepwater55
Posts: 7
Joined: Jan 2012

loss of arm and leg due to swelling post
surgery
i have great support and getting honest anawers from doctors
i will know more later today having first mri since surgery 10 days ago to prep fpr radiation
i will see how fast the beast is growing
thanks for your info

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Unfortunately most of the time GBM will grow very quickly without radiation and chemo. Some people on this website were not able to get a surgery or start radiation and lost their love one in 30 days. The life expectancy for GBM (and the the timeline you were quoting) is usually given if you undergo rad and chemo. You already had surgery. This is great great news.

Radiation will cause some fatigue and some cognition impairment. The chemo Temodar is a pill form given during radiation at a low dose; a month off chemo and then 5 days every 28 days of a higher dose.

Avastin is also usally given for GBM. It is a IV chemo that stops the growth of the tumor.

And then most importantly: There is a generic vaccine now for GBM.

That is right a VACCINE!!!

It attacks the growth factor VIII. It is given at many locations, including Duke. If I had a GBM I would move mountains to make sure I get the vaccines. ( I put a "s" to vaccines because there are actually multiple one; the easiest to get is the one targeting the growth factor VIII; but if you are reading this and you have a GBM that has not been operated on yet, then do yourself and your family a favor: go to a center that specialized in creating a vaccine from your own tumor cells, example University of San Francisco, UCLA, University of Miami).

A GBM is not a death sentence. There is no cure now but there will be one. More than 1000 clinical trial were registered in the world regarding gene therapy and vaccine therapy.

The steroid should help you with your deficits; rehabilitation should help you further.

Come back again on this website. And tell us you decided to do.

J.

deepwater55
Posts: 7
Joined: Jan 2012

got mri results this morning from last night
2 weeks post op and no noticable growth
wii begin induction phase of rad and chemo early next week
…and the beat goes on…….

belladonna
Posts: 1
Joined: Mar 2012

this guy is doinf a vaccine treatment in norway, it seems to work!!!

http://www.youtube.com/watch?feature=youtu.be&v=cGJzH7uxsJg&ytsession=9rl7ogyfgegM4bVGKfoc9famh2PjpP61TtjSufuet4_lhr65KpqEXW68cwDmVXJDj124xDfvqhX8h45-VaqoP4Hd-MIsiv-K8v3gJM1-dZ0xaus5tdIRe3I5mqjbq--XUhf4iOtnTn_7vm9oRFhTk9NMSj-4DULviOFCK7EtXRfzIPk9sURdzweiW4wXaCsK4deZYivqwDFPzPBD1SFp0EVznr1B8TBf3A795NvRvbTxU0D7AZlDWQYDQWeOb57gzICEzFF3iJXSRUg8VLL0khQHa214IdyENSFmiJ-MSSw

jcwinnie's picture
jcwinnie
Posts: 9
Joined: Dec 2012

You wrote: "It is given at many locations, including Duke." Could you direct me to where it would specifically list the places? From my limited research it would seem that Duke is one of the few places. I added MD Anderson Center and the National Center for Cancer Research. There may be one out in California and perhaps in Boston. 

dasspears
Posts: 233
Joined: Feb 2009

My sister-in-law is 56 was just diagnosed with two tumors - GBM grade 4. One tumor was partially resected, the other is midbrain and inoperable. She is on Temodar and undergoing week 5 of radiation. So far, she has done well. Some weakness on her right side due to the surgery but that is returning. Her main issue is fatigue from the drugs she is taking and from the radiation. Everyone had a different reaction to chemo and radiation. Her symptoms have been fairly mild so far. She is eating well, walking better and can do some things around the house. I'm hopeful that after radiation, she will begin to tire less and have more energy.

This is a wonderful site to share and receive support. Please come back.

mighty6
Posts: 47
Joined: Sep 2011

Gary,

Julie is right. There are hopes out there for GBM, in fact for all brian tumor patients. With all those promising vaccine/gene trials going on, I truly believe some breakthrough is coming soon.
My husband has been dx with GBM for more than 5 months. He had very minimum side effect from all (surgery, radiation, chemo): hair loss, appetite change, taste change, constipation, fatigue, most are improving once the treatment is over. Fatigue is there since he is still on Temodar, but it is manageable.
I echo Julia' suggestions too on taking vaccines. One way to do it is through trials. Here are the link for CDX-110 (the generic one):
http://clinicaltrials.gov/ct2/results?term=cdx-110

For newly dx GBM, it is in phase 3. But you need to act fast because they won't allow any other treatment done other than surgery and radiation.

You can also try to contact Celldex for compassionate use. Not sure how that works out, hopefully it is easier than moving a montain :-)

good luck!

- Jane

Daddys_Girl123
Posts: 3
Joined: Dec 2011

great to hear, because most people think of GBM as a death sentence. My dad who is 57 was just recently diagnosed with GBM grade 4. It hit him suddenly with confusion and headaches. He has started radiation 5 days a week for a period of 5 weeks. He is also on Temodar and Steroids at home. So far he is doing ok, just really tired and sleeps alot. This is so scary for us all seeing him sick, he never has been sick before this. The doctors can't operate because it goes all across his brain with satellite lesions. I've had my dad for 35 years and I am not ready to give him up to cancer! My husband fought cancer 5 years ago with leukemia. It is a rough battle. I just hope my dad does well with this.

ltaglio
Posts: 4
Joined: Jan 2012

I was diagnosed last February with a grade 4 glioblastoma. I was deteriorating very much until I was prescribed Low dose naltrexone. I am now very functional despite radiaton and chemo and the neurosurgery which removed 2.3 cm of a 5.5 tumor. Go to lowdosenaltrexone.org I can't begin to describe my improvement on this inexpensive prescription medication.

ltaglio
Posts: 4
Joined: Jan 2012

Go to lowdosenaltrexone.org and get some real help

jon4156
Posts: 7
Joined: Jan 2012

Gary,

You don't state your age, but age is a large factor in survival. Generally, elderly people have less survival time than younger people although I believe this is partially due to the fact that they generally have other health issues as well that compound their problems.

Standard radiation such as you are having starts out with small doses which get larger over the course of your therapy. If you were in generally good health prior to your craniotomy expect to have few problems with radiation, at least for the first couple of weeks. As the therapy continues and the radiation doses get larger you can expect fatigue to be the largest side effect. The temodar provided with radiation is low dosage and most people have few issues with it. If nausea becomes an issue there are some really good meds to control it.

Expect to start losing your hair about 3-4 weeks into the radiation therapy. If you have a full head of hair now, you likely won't lose everything and it's common to have a patch or two left depending where the treatment is located. The good news is that you can expect your hair to start coming back about four months after treatment and it's as soft as baby hair. My wife had a patch of hair on her head that didn't come out after radiation and the difference in texture between that remaining hair that had gone through decades of salon treatment, and the new baby-soft hair she got when her hair in other places grew back, was simply unbelievable.

With the exception of fatigue, you should do ok and your quality of life is not likely to be severely affected by the radiation/chemo treatment. Hopefully physical therapy will bring you your arm and leg back in good time. My wife came out of her operation with problems in her left arm and hand, but PT got them back. She did not work during radiation therapy but went back to work less than two weeks after the radiation was complete.

Go to www.gbminfo.com and click on "Statistics -> Patient Progress" to see how other people in numerous age groups are doing with their GBM journeys. My wife was diagnosed in March 2011 and had 90% or better of her tumor resected. We're 10 months out and she's currently doing well, still working full-time, driving again, and functioning at about 90% compared to prior to her diagnosis. Her biggest issue continues to be fatigue, primarily due to Keppra (we believe).

Best of luck. Keep your hope alive!

deepwater55
Posts: 7
Joined: Jan 2012

jon:
thanks for the information.you have answered a lot of the questions i had
i am 56 years old and am or was(lol) in excellent physical shape
in fact 3 days before my surgery i was working on an off shore drilling rig of the coast of west africa
being a regular visitor to the rig gym as well as 12hour work days i needed to be fit to perform my job
so hopefully this will help with my recovery
i have begun walking again with a cane,and upper arm strength is returning but no use of had now 3 weeks post op
today was my first day of chemo and radiation
other than some nausea after lunch i still was able to do my 2 hours of physio
so..so far so good ….the journey continues
thanks again for your post
Gary

RLR
Posts: 36
Joined: Sep 2009

I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!

deepwater55
Posts: 7
Joined: Jan 2012

RLR
thats truly great news
i had my diagnoses and surgery done herein bangkok thailand and there was never a question from the doctors here that surgery would be performed
again congratulations on your health

and giving up is something s something i DONT do.
i have remained positive and upbeat and intend to remain so
thanks for your encouragment

all the best to you

Gary

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Deepwater! I am so glad to see a post from you! I've been watching and wondering how you are doing. So glad to read this GREAT report!!! Thank you for stopping by CSN and posting an update. 

Love and blessings,

Cindy

in Salem, OR

davidlewis71
Posts: 2
Joined: Feb 2013

Wow, how wonderful, 3 years on and feeling good. I am so happy for you.  This has given myself and my poor husband some hope.  He was diagnosed 1st Dec 2012, had surgery a week later for 7.2cm tumour. It was massive and on his right side temoral lobe.  Because of his age 71 they said maybe he cant take both chemo and radiotherapy. I disagreed, he was, before the symptoms showed themselves, a healthy 71 yr old.  I begged them to please not disregard him because of his age.  So they decided to give it a try and he is now 2 weeks into his treatment.  He takes temodol 150mg 1 hour before his radiotherapy, 5 days a week.  He is doing quite well and has not felt ill or sick, just very very tired and sleeps for England as we say!!  But they still insist on a poor prognosis for him.  I need to have hope for him, I cant lose him.  He is a lovely man and our children and grandchildren adore him, as I do.  Reading your story has given us hope, I thank you very much for this.  Even with a lovely family around me I sometimes feel very lonely.  Thank you again.

maria isabel
Posts: 19
Joined: Dec 2012

posts like yours make me so happy, My mum is just 60 and was really upset all the sudden because she could not do things, she was diagnosed depression and then alzeimers!! but she did a brain scan and then the doctors realised that she had a Grade IV Glioblastoma. It was such  a shock as also the doctor told us that my mum will only live 3 to 12 months.

She had an operation by an amazing brain surgeon who removed all of the tumor! she was home 5 days after the op and now we are going through radiotherapy and chemeotherapy, she is doing brilliantly, we are also really looking after her diet and giving her natural food supplements.

As her carer/nurse/daughter, I am going to fight because I am not ready to lose my mum, reading suvivor stories give me strengh and cheer me up so every now and then I log into csn, from Spain where we live, and get hope.

I will try to get the vaccine for my mum if she can flight. there are not doing it here yet.

please keep me posted with all the good news and anything else helpful!

love

isabelx

 

maria isabel
Posts: 19
Joined: Dec 2012

posts like yours make me so happy, My mum is just 60 and was really upset all the sudden because she could not do things, she was diagnosed depression and then alzeimers!! but she did a brain scan and then the doctors realised that she had a Grade IV Glioblastoma. It was such  a shock as also the doctor told us that my mum will only live 3 to 12 months.

She had an operation by an amazing brain surgeon who removed all of the tumor! she was home 5 days after the op and now we are going through radiotherapy and chemeotherapy, she is doing brilliantly, we are also really looking after her diet and giving her natural food supplements.

As her carer/nurse/daughter, I am going to fight because I am not ready to lose my mum, reading suvivor stories give me strengh and cheer me up so every now and then I log into csn, from Spain where we live, and get hope.

I will try to get the vaccine for my mum if she can flight. there are not doing it here yet.

please keep me posted with all the good news and anything else helpful!

love

isabelx

 

Carolina Scott
Posts: 1
Joined: May 2014

RLR...I am so very happy to see your advice of DON'T GIVE UP HOPE!!!!  

My best friend's nephew (he might as well be my nephew too) was told yesterday that he has Grade 4 Glioblastoma.  He had 96% of his tumor removed on May 5th 2014.  He is 9 yrs old.  We were ALL devastated when we heard.  Our minds are going in every different direction.  I joined this site because I find it comforting to be able to communicate with people going through this similar situation.  This boy is no stranger to cancer, unfortunately.  Let me give you some background:

He was diagnosed @ 23 months with  Acute Lymphoblastic Leukemia.  He relapsed 8-14-2008 in his central nervous system and had a stem cell transplant dec. 9th 2008 at Duke.  This past Dec. 9th, 2013, we celebrated his 5 years of being cancer free.  Towards the end of April, this year, he started having severe headaches and vomitting.  The doctors did a CT scan and sent home with meds.  After a week of this, his parents demanded answers.  An MRI was done and that is when the tumor was found.  It was the size of an adult male's fist.  The surgeons went in on May 5th and removed as much as they could being careful not to disturb any critical areas of the brain.  They thought is was Leukemia and felt they cound treat the remaining 'rim' with chemo and radiation.  The tumor was sent to John Hopkins for a diagnosis.  Yesterday we received the diagnosis.  

Grade 4 Glioblastoma!

He is scheduled to have surgery on Friday, May 23rd to remove more small pieces of tumor because it will regrow if they dont. There will be some radiation and chemo to follow. This is all we know right now.  

This little boy is MY HERO!!!!  He has overcome so much and has beaten 'the odds' and I just hope and pray that this is one more time that he will win out!!!!  Thank you in advance for your time, suggestions, advice and comfort.  I will be praying for all of you!

 

oma2649's picture
oma2649
Posts: 4
Joined: Jan 2012

My Husband has this same tumor~In October 2011 he was given 7-14 days to live. He took 6 wks of radation in 10 days and recovered the use of his right sidllinge. He is showing signs of being progressivly more tired everyday. He was told the same thing about the odds of rcovey with surgery. The docs did not reccommend surgery as his tumore crossed midline, has taken all of left side of the brain and alot of right side, and ha formed a new one in the frontal area. He decided to not do anything else, but he anti-sesure and another med for swelling and it has helped. It is a hard decion to make, I wish you luck and prayes

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Gary.

My 28 year old son (26 at time of diagnosis) had surgery with 100% resection of visible tumor. After he recovered from surgery, he did 6 weeks of chemo (Temodar) and radiation. Radiation was no picnic, but I would never say that it messed up the quality of his life--certainly not enough to skip doing it. I believe that the radiation added time to his life. Unfortunately he is battling a recurrence now, but I still am very glad that he did radiation, and if we were to do it all over, I'd still want him to do radiation.

The biggest problem from the radiation was the extreme fatigue. Everyone is different and has different responses and side effects, but for David, being so tired all the time was the worst part. He also lost his hair, but it grew back. He tolerated the Temodar pretty well....some stomach aches and "chemo brain"---some sort term memory loss and attention deficit, but that went away after he finished radiation. It took him a few months to recover...he finished the treatments in July, and he felt well enough to go to Disneyland for five days with our whole family in December. We ran all over the place and he did amazingly well. He went back to college and work in September. My son doesn't have any side effects from the radiation that we are aware of.

I'm no doctor, and I don't know how you will respond to radiation and chemo, but I think it would definitely be worth it to add a year or more to your life. You mentioned that you were in good shape...that will be in your favor and should help you tolerate and recover from the radiation and chemo a little easier.

I'm so sorry that you are faced with these decisions. I will be thinking about you and praying for strength and healing for you. Please keep us updated on this website. I care about everyone who is battling brain cancer or who is caring for a loved one who is battling, and it helps to know how others are doing.

Love and blessings to you,
Cindy in Salem, OR

deepwater55
Posts: 7
Joined: Jan 2012

cindy;
thank you very much for the information
i decided to go ahead with the induction phase of treatment and have had 3days of chemo and 2 of radiation
with 40 more treatments to go
i will see what change there is in the remaining cancer and make further decisions at that time
agin thanks so much for your kind words of support

gary

oma2649's picture
oma2649
Posts: 4
Joined: Jan 2012

MY HUSBAND HAS A GRD 4 GLIO. HE WAS DIAGNOSED OCT 13TH 2011~AT MD ANDERSENS IN TEXAS~tHIS WAS A OPINION~HIS IS INOPERABLE - IT CROSSED MIDLINE TO THE OTHER SIDE WHILE WE WERE THERE. HE HAD 6 WKS OF RADIATION IN 10 DAYS TO BUY HIM SOME TIME. HE REGEAINED THE USE OF HIS RIGHT SIDE, BUT WALKS WITH CAUTION. HAS VERY LITTLE BALANCE SO WE WATCH HIM CLOSLY. I SEE SMALL CHANGES TO THE NEGATIVE~AND HE SLEEPS MORE THAN HE DID A MONTH AGO.I AM HIS CAREGIVER SO IT HAS WORN ME OUTA BIT,BUT HIS COMFORT IS IMPORTANT. THE DOCTOR COULDN'T TAKE ANY OF THE TUMOR.

ForHope
Posts: 16
Joined: Jan 2012

My bro was dx with GBM dec 2010, overseas where there was no treatment available. We flew him to Bangkok where 100% of the tumor was resected. He also received radiation, chemo just Like the US protocol and is currently taking Temodar 28/5 cycle for a year. He had minimal sideeffects from chemo especially constipation and overcame that w/ senna and dulcolax. He is enjoying his life and making everyday special.

Fight if u can and don't give up. God is in charge afterall.

For Hope

ForHope
Posts: 16
Joined: Jan 2012

My bro was dx with GBM dec 2010, overseas where there was no treatment available. We flew him to Bangkok where 100% of the tumor was resected. He also received radiation, chemo just Like the US protocol and is currently taking Temodar 28/5 cycle for a year. He had minimal sideeffects from chemo especially constipation and overcame that w/ senna and dulcolax. He is enjoying his life and making everyday special.

Fight if u can and don't give up. God is in charge afterall.

For Hope

deepwater55
Posts: 7
Joined: Jan 2012

did he go to the Bumrungrad in Bangkok
thats where i am .its a terrific hospital
i was working offshore in ivory coast west africa.flow from rig to local hospital where ct showed the tumour. and flew here
within 24hours of arrival i had mri ,ct scan ,and surgery with near total removal of tumour
now at day 8 of chemo and radiation,with 30 more to go..
regaining my strength ,up walking ..and most important keeping my spirits high and a smile on my face
i hate to disagree but I am in charge
Gary

Glenda_GBM Survivor
Posts: 6
Joined: Jan 2012

Hi..From Philippines here.My wife ( 31 years old) was DX with GBM on December 10, 2011 and now 5 mos pregnant. She had 80% resection on 12.23. 2011 of her 7 cm tumor mass and will start 6 weeks radiation this week. What makes the situation difficult is her pregnancy. We cannot start a low dose temodar with radiation as it will cause fetal defect.Therapeutic abortion is illegal here. Our Radiation Oncologist works with her OB to minimize the effect of radiation to the baby in her womb. Radiation will buy us time so that she can deliver the baby via caesarian section by 28 weeks. Then we will start her chemo.

She regained her strength now, can walk, go the comfort room take care of herself which she cannot do prior to surgery. GBM is really a life changing experience but we are not giving up because she is still young. She is taking every supplement we can afford on top of the western treatment to boost her immune system with the hope of being a long term survivor. Above all, there is God.

ForHope
Posts: 16
Joined: Jan 2012

Right when I think I have heard it all with how many lives are affected by this Beast, I am down to my knees asking to please stop when I read your post.
I'm sure there are no words, no thoughts of wisdom to help you cope with this as you worry about your wife and unborn child. You will forever be in my prayers. Keep fighting and take it one day at a time. That is at least how our family is holding up as we celebrate each day of my brothers life.

For hope

ForHope
Posts: 16
Joined: Jan 2012

He went to Bangkok hospital medical center, bc the doc we wanted saw patients there only. Name is Dr Sith. He is an awesome neuro oncologist and US trained. Thailand in general was a good experience for us in light of a bad situation. Good luck in ur journey.

Together in hope

DellaMarie
Posts: 9
Joined: Jan 2012

Hi Gary,
I just wanted to let you know that I've seen one too many stories with people getting the same diagnosis as you only to outlive their prognosis. I strongly suggest reading Ben Williams story on www.virturaltrials.com He also posted in November 2011 new and promising alternative treatments that may be worth your time to look into. He also wrote a book: Surviving Terminal Cancer that came out in 2007. There is so much research and information out there, I would be happy to share with you what I have found that you may find helpful. I agree completely with your statement about quality of life. I am refusing to let my husband take Avastin because I know his health history and it would be unlikely his body could withstand that type of treatment. I know that many have felt that Avastin helped or is helping but my ultimate goal is to cure my husband and not just to buy more time, another month or two with a questionable quality of life. But that said it is important to keep buying time to give yourself the time needed to find the right treatment plan for you, as each GBM is different and what works for some doesn't work for others. Some have been cured taking Tamoxifen and others receive no benefit, just as the majority of people do not respond to Temodar. My husband started with the "gold standard" which is surgery, radiation and Temodar,for treating stage 4 GBM and as soon as possible we found an alternative care doctor who could add alternative treatments, he is now taking daily low doses of Temodar and combining it with alternative treatments that have very little risk to his health/low toxicity and is still under the care of a conventional Neuro-Oncologist whose is more open-minded than most. We are only using alternative treatments that have shown in published studies to work with chemotherapy or are able to enhance the body's own immune systems, there's more of course but since I don't know if you are interested in any of this I won't waste anymore of your time if you are not interested.
I wish you the best Gary-
DellaMarie

RosaC
Posts: 2
Joined: Jan 2012

My brother was diagnised in Ap 2010, and is doing remarkaly well. Temodar did not work for him, and is under CCNU, and his tumor has reduced. I read the William book and I like his "coctel approach" We are very open to new other alternative treatments and I would appreciate you share with us. His oncologist is ortodoxm but we are open to use other agents.
Thank you,
RosaC

lboy
Posts: 2
Joined: Mar 2012

My wife (64) had a brain haemorrhage at the end of December, requiring emergency surgery to survive. All the CAT scan on admission showed was a massive bleed. The surgeon noticed some unusual tissue, took a sample, and ten days later we got the devastating news that it was a GBM stage 4. We can't operate again so soon, or give you more than palliative radiotherapy we were told - so go home and die, with an NHS palliative home care package managed by the local hospice (we are in the UK).

Rapid deterioration was expected, but she kept getting better, got speech back (and otherwise mentally fine) although right side remains paralysed. Another MRI did show the tumour, but the consultant oncologist thought she was strong enough for a full course of temozolomide and 30 radiotherapy sessions. She has stood up to it well, only needing steroids now with 10 days to go.

We both know the odds, which are grim, and you do wonder if it is worth it, especially as they still could not surgically resect. She is still bedridden, took her out for a walk today in the spring sunshine, it depressed her as it brough home to her how crippled she is. Still, she has defied the odds till now! Won't have an MRI for another 6 weeks or so, so fingers crossed

annielin1
Posts: 2
Joined: May 2012

My son, Rob, age 45, was diagnosed with glioblastomo grade 4 after having seizures 3 weeks ago (right frontal lobe)
He has just begun 6 weeks of radiology/Chemo. This, after 90% of the tumor was removed with surgery.
He is feeling really positive and is in good health, with the exception of losing most of use of left arm and hand.
His outlook is so positive...I just need to feel some of the same because everything I read has his life expectancy at about one year. He has 4 kids...19, 17, 15 and 12.
I joined this blog for some words of encouragment....success stories...and something to help get rid of the sadness I feel every time I think of losing him and of what he will miss if his life is cut short in this way.
Surely there are more people out there who have some better news than what I am hearing about personal success in dealing with this monster!
Thank you,
Linda

madisonmuzz
Posts: 13
Joined: Apr 2011

Linda,

My husband was diagnosed in December 2010 with a glioblastoma grade 4. The outlook for him was also grim. I am pleased to tell you, he is still stable. He is receiving chemo, Avastin and Irinotecan every other Friday. He is not having any sickness from the chemo but is experiencing fatigue. He is still working 1-2 4 hour shifts per week. He is able to enjoy most things, but does get tired quicker.

He was very lucky, when they removed the original tumor, he didn't lose any functions at all.
You mentioned how positive your son is. That is like Scott. He is more positive at times then me. It is so difficult, which you know, to watch someone you love fight so hard this battle. We have 1 son, age 20. He is a huge help and so positive.

I am here for you any time you need to talk. It is not an easy task. jls2@roadrunner.com

Keep the faith. Only god knows when the time will come. No doctors can tell you that. In fact, I wish they would not even try to mention how long someone has here on earth. They do not know.

As for you son. Continue to stay positive. That is my only advice. Unfortunately, we can not change the cards dealt to us, we can only live in the moment. Your entire family is in my thoughts and prayers.....

I have a quote that gets me through most days, "There are two days in every week you cannot worry about, yesterday and tomorrow. You cannot change what happened yesterday and you cannot control what will happen tomorrow. So live for today!

Sincerely
Leslie

annielin1
Posts: 2
Joined: May 2012

Thank you for your kind words and support. Rob does now have blood clots from the Chemo treatments (one in his lung)....however, he only has 8 treatments to go and even though he has pain in his left leg and arm..he still has a real positive outlook. I believe, too, that only God KNOWS. A doctor can only make an educated guess...and prayer is most powerful.
I will also pray for your loved one, Scott, and your family.

I am traveling to Albuquerque on Sunday to remain with him for the remainder of his treatments (and then hopefully bring him and his 2 sons back to Texas to live)..I will have some spare time while I am waiting in Albuquerque and will send e-mail then.
Linda

agblady
Posts: 1
Joined: Jun 2012

My dad has stage 4 gb and they gave hime 4-6 momths, we are in month 4, and he isn't doing so hot. How is your dad and how is he doing?

bigdoglerm
Posts: 1
Joined: Oct 2012

Sorry to hear about your recent health problems, but I want to encourage you to keep hope.

Last March 16th I was at work and a coworker noticed that I had a facial drop and was slurring my speech.  I thought that I was having a stroke.  I also suffer from diabetes and high blood pressure.  I went to the hospital and they did a cat scan and found a tumor the size of a golf ball in my right frontal lobe.  Due to some kidney complications I couldn't get an MRI for 2 days and eventually on the 21st had about 90% of the tumor removed.  When I woke up, there were no physical complications and was able to walk and go to the bathroom on my own.  I went home about 3 days later.  A week after that I started radiation and chemo therapies.  The radiation took about 15 minutes a day and I took the chemo capsules at home about an hour before radiation, but couldn't eat for about 2 hours after that.  The chemo was taken every day for about 4 or 5 weeks with no real side effects except tiredness.  once radiation was over I had to wait about a month to start the new chemo regimine.  I take it for 5 straight days and then no medication for 23 days, then the cycle begins again.  These next cycles are about double the strength of the first round, and I have had occasional nauseau and fatigue, but nothing I can't handle for the rest of my life.  It won't be easy, I've had  many a sleepless night thinking about my future.  Last month I celebrated my 60th birthday and am looking forward to many more.  I am now allowed to drive and have begun working again on a part time basis.

 

Good luck,

Gary Lerman

davidlewis71
Posts: 2
Joined: Feb 2013

We had no idea anything was wrong until 2 days before my husband was admitted to hospital by emergency ambulance. He kept losing his balance and mis-judging doorways walking into the door frame. The ambulance was called as he actually just fell over banging his head.  Scans and MRI's were done and a very large Glioblastoma Multiforme Grade 4 was discovered in his right temporal lobe.  Surgery was scheduled for the following week.  They removed as much of it as they could, but not as much as they wanted.  2 weeks post surgery he is much better, but I think probably due to the steriods. He was then put on Chemo/Radiotherapy.  Temodol 150mg per day taken 1 hour before radiotherapy.  He is now 2 weeks into his treatment.  I dont think the shock has worn off yet and I cry alot, but not in front of anyone.  He is 71 yrs old and was told before treatment the prognosis is not good.  But we said please just try and get rid of it best you can.  Today, he is not well.  He has to miss his radiotherapy today.  The oncology doc said that was normal after 2 weeks of aggressive treatment and he has 'upped' my husbands steroids.  He just sleeps all the time, but has tolerated the chemo/radio quite well I thought.  Thank you for listening.  Its very lonely out here.  I am in London, England.  I cant lose him, there has to be hope.  Thank you.

maria isabel
Posts: 19
Joined: Dec 2012

I know how you feel, I am looking after my mum, she is coping very well with the radiotherapy and with the chemeotherapy but she has no idea of the actual diagnosis....though since the doctors told me that 3 to 12 months maximum I have realised that there are people with Glioblastoma IV still alive after 4 and 7 years and doing normal life just taking a course of temodal or avastin every month for 5 days.

I am tired and I do everyting so early I read in this website that I had to lookafter myself so I could care for my mum. 

I take fragaria/vitis tablets from weleda and Kalium phosphoricum, I also used to cry myself to sleep and Emergency Essence from Jan de Vries worked on the second day that I started taking it!! It was one of my friends who made me get all this things as I was open minded to anything as the situation was so desperate.....the emergency essence on the days when i am low i just take it every 3/4 hours, then there are days when I dont need any.

My mum has her chemeo with an empty stomach and then two hours later her radio, also empty stomach and then she eats an hour after the radio...this has really help with nausea.

She eats very very healthy and she takes curcumin tablets, graviola, multivitamin and lots and lots of raw veg and fruit.

Alkaline water ph7.5 to 8 plenty and no red meat, no sugar, nothing processed... the nutrition is very important for her energy levels, sugary things will not giver her anything nutricionally and natural sugars from fruit and veg are the best.

jerrykline.com, ben williamsgbm www.virtualtrials.com also so helpfull

Buy him a baby toothbrush as their gums get very sore and they need to rinse their mouth with alcohol free mouth wash as with the oral chemo they can get mouth infections.

email me at yeyes29@hotmail.co.uk if you need anything. We are all in the same boat!

take care

isabelx

maria isabel
Posts: 19
Joined: Dec 2012

I know how you feel, I am looking after my mum, she is coping very well with the radiotherapy and with the chemeotherapy but she has no idea of the actual diagnosis....though since the doctors told me that 3 to 12 months maximum I have realised that there are people with Glioblastoma IV still alive after 4 and 7 years and doing normal life just taking a course of temodal or avastin every month for 5 days.

I am tired and I do everyting so early I read in this website that I had to lookafter myself so I could care for my mum. 

I take fragaria/vitis tablets from weleda and Kalium phosphoricum, I also used to cry myself to sleep and Emergency Essence from Jan de Vries worked on the second day that I started taking it!! It was one of my friends who made me get all this things as I was open minded to anything as the situation was so desperate.....the emergency essence on the days when i am low i just take it every 3/4 hours, then there are days when I dont need any.

My mum has her chemeo with an empty stomach and then two hours later her radio, also empty stomach and then she eats an hour after the radio...this has really help with nausea.

She eats very very healthy and she takes curcumin tablets, graviola, multivitamin and lots and lots of raw veg and fruit.

Alkaline water ph7.5 to 8 plenty and no red meat, no sugar, nothing processed... the nutrition is very important for her energy levels, sugary things will not giver her anything nutricionally and natural sugars from fruit and veg are the best.

jerrykline.com, ben williamsgbm www.virtualtrials.com also so helpfull

Buy him a baby toothbrush as their gums get very sore and they need to rinse their mouth with alcohol free mouth wash as with the oral chemo they can get mouth infections.

email me at yeyes29@hotmail.co.uk if you need anything. We are all in the same boat!

take care

isabelx

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