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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

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 !!

madisonmuzz
Posts: 13
Joined: Apr 2011

Thank you so much for your positive thoughts. You are so right about GOD could abandon you at any time and allow you to go on..... My hsuband was diagnosed Dec 27, 2010. He is still doing well today. Working 1-2 4 hour days per week. they had basically said it was a death sentence, about 12 months is normal, but he is still well. The fatigue is awful from the chemo every other week, but other than that stable. Has been off steroids since Xmas. Positive attitude is all I can say......One day at a time.

Leslie

auntnita611
Posts: 3
Joined: May 2012

My 12 year old nephew was dx;d with glioblastoma stage 4 by second opinion yesterday. I am a health care professional and did a long stint in Hematology Oncology at the University of PA; However I have never worked with children only adults and I've seen the best prognosis and I've seen the worst. I've been looking for ways to deal with this the best I can BUT this is the hardest test I've ever been giving even with my mother passing away on my lap I don't know how to accept this. His tumor was removed before he was diagnosed, which the doctors say was the hardest part in attacking this cancer , but I've seen what chemo and xrt does to adults so I can not imagine what it can put a child through. I stand strong on my faith as well as his parents but yet and still this is very scary; and we haven't even been able to tell him what's wrong with him because he's just to happy and full of life NO side effects of the surgery other than migraines here and there from the craniotomy. I read so much about this illness and I don't want to believe more than half of it. Is it anyone out there that could share some coping skills hat I can utilize and pass on to my family?

auntnita611

madisonmuzz
Posts: 13
Joined: Apr 2011

auntnita611

I too am a health care worker and have been through GBM in the past. My father-in-law passed 24 years ago. Back then it was a horrible diagnosis. My husband was diagnosed with GBM IV in Dec 2010. he is still doing really well. Been stable for more than a year. The oral chemo, Temadar, was horrible, but after they switched us to the IV chemo every other week, Scott has really had no sickness. Just the fatigue is hard on him. he is still working 1-2 4 hour shifts per week.

My best advice is keep the faith. Live in the moment. I have a friend whose child was diganosed with a GBM IV when he was 4 years old, at base of the brain stem. He had radiation and chemo therapy. He lost his vision and some of his hearing. It was awful..... but after the tumor shrank, they found a neurosurgeon in Boston to attempt removing the tumor. He is now 12 years old, still in remission. He is happy, pretty healthy, some vision restored, most of the hearing is back and he is loving the violin.

Please keep the faith, stay positive.....Hugs to you and your family.

Leslie

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

my daughter was diagnosed with AA3 in March 2010. My daughter has had 5 crainiotomies, 6 weeks of radiation, 2 years of chemo and suffered a massive brain hemorrhage. Her doctors have said that her age and her positive attitude have had alot to do with her recovery. My daughter handled the radiation very well. She got tired toward the end but, nothing like some of the adults I've seen. She did great with her chemo too. She had a port and right before her treatment would begin they would would give her IV zofran. She never got sick or anything. Kids will surprise you. My daughter knew that she had cancer before we left the hospital after her very first surgery due to a nurse talking to a student. I have been honest with her ever since. It has been very hard to be honest but it has also helped her make some of her own medical decisions, I wish you and your family all the best. You will be in my prayers

JohnnyC26
Posts: 1
Joined: Jul 2012

At the start of this year a hockey colleague of mine's Father was diagnosed with a very aggressive brain tumour. (Glioblastoma Grade IV). That stunned us all as he's a fit and active 40yr old who looks after himself well and is rarely ill. He’s currently receiving a mixture of radiotherapy and chemotherapy at James Cook University Hospital however the Oncology team are uncertain of how effective this treatment will be. Also due to where the tumour is situated he wont be able to receive any more 'conventional radiotherapy'. The only alternative option he has been given is to use a new radiotherapy treatment known as 'Cyber Knife' treatment which is more accurate. The problem being that this is not available on the NHS. Therefore, he has asked as many people as are willing to take part in the RHM to help raise £22,000 so that his Dad can undergo further treatment.

We'd all really appreciate if you could take a look at the following link and, if at all possible, contribute, donate or pledge.

http://www.wiltonhc.co.uk/redcar-half-marathon/

Many Thanks!

AshleyMZ
Posts: 1
Joined: Feb 2013

Hello. I just found this site today while researching this cancer my grandma has recently been diagnosed with.. 1. this is very devastating for me and my family, as i'm sure it  is with others on here, 2. I know absolutely nothing about this type of cancer, but i am glad i stumbled upon this site to hopefully gain more information. I have not been able to get out to see her, but my parents are there with her and have been telling me everything..

 

My grandma was diagnosed this weekend with this horrible cancer, and this all pretty much started about 2-3 weeks ago when my grandma was feeling sort of light-headed and just not wanting to eat much. She went to the doctors and they ended up telling her that she had low sodium levels and gave her some medication to help that. So about a week or so went on and then i think she started to get that dizzy feeling and had weakness in her legs and she fell. She was taken to the hospital again,they did testing, MRI, CT scan and what not, and found that she has a brain tumor. They did the surgery to remove most of it which was a grape size, and the results are what we know now.. IT is stage 4 cancer. Since she has been diagnosed, they say the doctors (neurologist and radiologist) have said that her motor skills have to improve before they can make any decisions on treatment, which leads me to believe the tumor is located near or on her cerebellum. I'm not sure what to do with all this information, more so how to even understand it myself since I am not there at the hospital, but if anyone has any helpful information or advice it would be greatly appreciated. Thanks for reading my post.

 

Thoughts and prayers to everyone going through this.

missy 1994
Posts: 8
Joined: Feb 2013

Hello, I do not know if I am writing on the correct post but in mere panic and desperation I have signed up for this site.

First off I know that this is an American site, I am currently living in the UK but let me tell you a little about myself.

Both my Ma and pa died, my brother and my grandma and the only person who is looking after me now is my grandpa- one day he was acting real weird and asked me if the "tv was melting" and just started speaking real funny- I ended up calling an ambulance and was told that my grandpa had gliblastoma grade 4. They removed a lot of the tumour and after being in hospital for 8 weeks he was back to normal and completely co-herrant -then after being home caring for my grandpops he then had a funny turn again and I panicked because I thought the tumour is growing back again. turns out he has pnemonia.

Anyways, to cut a long story short I am super scared I have no other family here in England and my aunt lives in America and thats all, Im super dooper scared my grand daddy is gunna die- the nurse told me he was gunna only live for two more months and this was before my grand daddy was examined by the doctors to find out he has pnemonia.  I just worry that with this brain tumour he will leave me too just like my other family all dead and I will be all alone, I love my grandaddy so very much and I am his fulltime carer at 19. I pray every night to my mother that things will get better but seeing him in hospital everyday when he is all confused, I worry if he will end up forgetting who I am. I keep thinking it is just the delirium caused by the pnemonia infection, as last week the m.r.i scan showed no tumour(he had um? 6 weeks of radiotheraphy i think?). I am just scared- I am sorry I posts a message on here because no one is giving me information they just think I am young and stupid but I need to know all the ins and outs.

Can someone please explain to me if gliblastoma makes people real confused kinda like not him anymore or is it alzeimers as he is 75 or is it the combination of the cancer and pnemonia causing him to be confused or the radiotheraphy. I know he is old but he doesn't act old or look old and was always really super fit then one day he had the tumour,im just scared thats all.. all I can hope is he gets better as I have no one else and as for my friends?, they stopped wanting to hang out with me now that I look after my grandpa but I guess thats just teenagers huh :(

thank you x

alexyj23's picture
alexyj23
Posts: 7
Joined: May 2012

Hi Missy,

My dad was diagnosed last year with this horrible disease.  He was not operable unfortunately.  One thing you have to remember is that it is his brain that is being affected.  My dad's tumor is in his temporal lobe which is the area that controls speech and memory.  so when he talks, he sometimes can't put together a thought or can't think of the word he wants to say.  Depending upon the area of your grandpa's tumor, it is most likely causing him to be confused.  I don't want to be the one to tell you this, but prepare yourself for what is to come.  The people we love about have a hard road ahead of them as do the ones who are caring for them.  let me know if you have any other questions.  Just keep praying and thinking positive.   You have to stay strong for them.

 

Ashley

alexyj23's picture
alexyj23
Posts: 7
Joined: May 2012

Hi Missy,

My dad was diagnosed last year with this horrible disease.  He was not operable unfortunately.  One thing you have to remember is that it is his brain that is being affected.  My dad's tumor is in his temporal lobe which is the area that controls speech and memory.  so when he talks, he sometimes can't put together a thought or can't think of the word he wants to say.  Depending upon the area of your grandpa's tumor, it is most likely causing him to be confused.  I don't want to be the one to tell you this, but prepare yourself for what is to come.  The people we love about have a hard road ahead of them as do the ones who are caring for them.  let me know if you have any other questions.  Just keep praying and thinking positive.   You have to stay strong for them.

 

Ashley

janaselva
Posts: 1
Joined: Jan 2014

Hi Ashley,

I am going through a similar experience as mentioned by yours, as my mom was recently diagnosed with Grade 4 Glioma. This has impacted her Speech, Memory and her movements on the right hand and legs. Doctors have suggested that operating & treating her would not have any major difference in terms of her life expectantcy due to severity of the tumor and then due to her age. I am really worried, as i dont want her to suffer during her last days. I just don't know what to expect next. Due to the steroids given by the docs, my mom is also very aggressive and angry these days..

Can you suggest or advise me what to expect further.. Is there any hope ...

Thanks

Jana

mccindy
Posts: 82
Joined: Jun 2013

Hi Jana,

I've spoken to several people who lost loved ones to GBM.  Typically there is not a lot of suffering toward the end; as the tumor grows and increases the pressure on the brain, the person usually tends to sleep pretty much all the time.  They aren't in a lot of pain, just very sleepy . They do usually lose the ability to speak or move much.  More of the suffering is felt by the family, watching a loved one go through this disease, knowing the invevitable is coming.  Hang in there.  And tell her you love her a lot, even when she is sleeping, she'll hear and know you are there with her.

Ayline
Posts: 5
Joined: Feb 2014

Hi Ashley, how is your father doing? How old is he? My father's tumor is also on the left temporal. His speech is the most effected too, he loses words in the sentence and sometimes can't put a whole sentence together. He has also have a problem remembering names. It's tough! Fortunately he is physically fully functional which gives him a lot of hope because he is a very active individual even at age of 77. One other thing I think keeps him optimistic is that he doesn't really know it is cancer... well we never uttered the word and he doesn't know that the tumor is that aggressive. As far as he is concerned the surgery cured him and once the therapies end he will be back to normal.

Thanks.

Ayline

BJ Mullins
Posts: 1
Joined: May 2013

My girlfriend was just diagnosed last week on 5/1/13. We entered the hospital the previous Friday night (4/26/13) when she was suffering from stroke like symptoms. The CT scan showed a rather large tumor in her left frontal lobe. Looking back now I can tell the doctors feared the worse then but didn't want to tell us. She was put on the schedule to be the first surgery Monday morning with the hospitals chief neurological surgeon. She went in for surgery at 730am Monday, procedure began at 830 and was complete at 1030. The surgeon was confident in the results stating that they removed the "bulk" of the mass....once again I look back now and realize I was not focusing on the right words. Of course we then had to wait for pathology results to come back from the biopsy and just focus on recovery.

Then on 5/1 we were given the results that it was GBM. I went from a positive outlook because it was removed, to helping her heal from the surgery, to absolute shock when we realized what this horrible disease really was. Absolutely devastating! Now we are scheduled to return on 5/15 to remove the 19 staples from the surgery and to talk about options for treatment. Initally she talked about not seeking treatment but recently over the past couple days she is a lot more open to it. After researching GBM over the past week there are so many different stories and results out there. My head is spinning over all the different scenarios that could play out. One thing that looks to be consistent is that without treatment life expectancy is very short. She has two young children with her ex husband and I want her to have all the time possible with them.

Any suggestions on dealing with the unknown? Any similar experiences that can help me be there for her even more than I already am?

 

maria isabel
Posts: 19
Joined: Dec 2012

we have gone through the same, my mum was diagnosed on the 3rd of december, we had very succesful surgery then radiotherpay and chemotherapy. both things I think are a must to give you more chances, also i was expecting my mum to be very tired and sick but she was sick only once and had a nap most days and that was it!

at the moment she is having chemo 5 days a month and until june we will not have another scan.....

 

we were told 3 to 6 months life expentancy and that was 5 months ago! my mum looks so well and apart from the 5 days a month chemo she only takes homeopathic tablets and lots of extra vitiamins ( she took them all from the beginning of the treatment)

Natural diet, lots of fruit in the liquidizer, lots of fresh veg, fish, little red meat, organic chicken, alcohol only in special ocassions, she looks better than 5 years ago!

we went to see an oncologist who also uses natural therapies, he insisted that a detox (2kg of sea salt in your bath) everyday (or in the sea) natural diet (no process food at all) drinking plenty of water, would help, we have done it and seems to work!

my email is yeyes29@hotmail.co.uk if you need anything.

take care 

isabel

confusedtr
Posts: 3
Joined: Jan 2014

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

confusedtr
Posts: 3
Joined: Jan 2014

my husband was diagnosed with gbm less than a month ago,he is on steroids starting radiation and chemo next week.he is showing signs of aggression towards me and sleepless nights,i do not know if this is normal nor what to do.he is slightly dillusional.

mccindy
Posts: 82
Joined: Jun 2013

The aggression can be a fairly common side effect of the steroids.  It also depends on where the tumor is.  Did he have surgery to have it removed?  If you feel his behavior is dangerous and he is not sleeping, it's important to address this with his doctor, as they may need to adjust his medication levels in order to keep his swelling under control and also his mood swings. 

Ayline
Posts: 5
Joined: Feb 2014

Hello everyone, I am new to this site and it is interesting/comforting to read eveyone's experience with GBM. I couldn't figure out how to start a new post so I am replying to one of the last posts.

I have gone through the same rollercoster of emotions since November 2013 when my father, aged 77, was diagnosed with GBM on his left temporal lobe. He underwent surgery the first week of December 2013. Within two weeks he started Chemo which lasted 7 weeks, once a week and 33 sessions of Radiation (still few days left as there was a gap of 2 weeks between). He is on Dexa injections until the radiation is completed and Depakin tablets for life (3 per day), during radiation he also took Temomid 100mg and Temodal 20mg.

Well so far so good... what can I say, I have to be greatful that the surgery went well and most of the tumor was removed. I don't know the percentage. He experiences fatigue and sleeps a lot, though he tries to keep active in the house. His memory is a bit shaky, he doesn't remember names at all but recognizes faces and voices. His speach was also effected in that he confuses words without realizing.

Next step is to do another MRI probably ealry March 2014 to see if there is new growth.

I do have a colleague whose mother was also diagnosed with GBM, underwent surgery in April 2012 but unfortunately passed away 18 months later in November 2013. On the other hand a neighbor of hers has lived already 5 years with this desease. So, it is different case by case, age and I guess physical state. The most important is to stay positive and to fight this beast.

Thank you!

Ayline

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