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glioblastoma multiforme stage 4
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glioblastoma multiforme stage 4

my 21 year old daughter has been recently diagnosed GBM grade IV  - she did 2 craniotomies- we see the oncologist Monday - we will then find out when the radiation and chemo will begin... everything I read is saying 1 - 2 years life expectancy - I just am unable to accept that..
realistically I need to know how this will affect her? will it be her motor skills? eye sight?? 1 of the tumors were on her optical nerve ( her sight is still real fuzzy) the doctors say the remove all- but there are tenticles..??.. I live away from her, I flew out to her side the day she underwent her first surgery... I am scard to go home.. how quickly can this affect her again?
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15 Comments Post a Comment
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Avatar_n_tn
I am so sorry for you.  My son was diagonisieed at age 22 with a gbm grade 4.  He has had 3 surgeries.  The tentacles were explained this way:  A tree has roots.  You can cut the tree but the roots are still there.  That is what a gbm has.  You can't see all the roots.  This is why they grow back.  My son was given 9-18 months and we were told if he made 2 years to thank God.  We thank God every day.  It has been over 5 years.  April 30,2004 was his first surgery.  Now his tumor is progressing and is inoperable now because it has spread to the other side of hhis brain.  For those 5 years he worked every day and has had a great life.  Now he has lost the use of his left side.  We have had to put him in hospice now.  He is 27.  I still thank God every day for him.  There is always hope never give up.  He has baffled all his doctors but miracles can happen.  My daughter and I have just decided you have to BELIEVE!!!  I hope I have helped you a little.  I will be praying for you and your daughter.   Good Luck and just BELIEVE

Janet
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Avatar_n_tn
My heart and prayers are with all who have GBM and their loved ones.  
There is a site, brainhospice.com that has much end of life information.  The first time I went to it I knew what stage my husband was in. Usually the doctors wait too long to put their patien on hospice.  Maybe it's because it's a statement of what is to come.  
GBM patients are tough.  They fight hard.  They love us.  We in turn care for them with the respect and dignity they deserve.  I pray for all of you as I was in your shoes just a few weeks ago and still can't believe my loss.  I can't imagine this bestowed on my child.  GBM took my husband.  I pray you all have a transistion of love that surrounds you and your family.  
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1401681_tn?1280840042
How do you stop crying?  Im out of control My darling MOM had this nasty GBM.  Found out yesterday after her brain surgery.  She is 72 an an active senior who loves gargening, photographing etc. The Dr. will tell her today.
Im so sad and I cant control myseld. Im begging the LORD for strength.
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Avatar_f_tn
My best friend was diagnosed with a stage 4 GBM.  She has had surgery-removed 90%- and is undergoing chemo and radiation.  I spend as much time with as I can and we laugh and cry, and other than some forgetfulness, kind of like she has a bad memory, she is the same friend.  I am having a very hard time believing that in anywhere from 8 months to 2 years, she will no longer be part of my life.  As neither of us have kids, we always joked we would be in our rocking chairs at the old folks home together.  I wish there was more that I can do.  Any suggestions?  Any good recipes while on chemo?
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1566391_tn?1298426003
A close friend of mine was diagnosed with gbm stage 4 on 10th October 2010. He underwent surgery to remove the tumour and then started radiotherapy with a combination of chemotherapy tablets. Unfortunately the tumour grew back where it had been removed and had also spread to the other side of his brain (inoperable) and down his neck. We saidly lost him on 13 Jan 2011 aged 58. At the time of his diagnosis we were informed that if the radiation therapy did not work then the maximum life span is approx 5 months from diagnosis, however if radiation therapy was successful followed by chemotherapy, then possibly 1 - 2 years. Best of luck with your family. Stay positive and strong. Take each day as it comes and cherish them.
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Avatar_f_tn
My husband was diagnosed with gbm stage 4 September 2010 he was operated on 2days after it was found, we thought he had a stroke, he had radiation and chemo at the same time in October 2010 for 6wks. he has started another course of chemo in tablet form,this began in January this year 2011 his last course of treatment will be March the 18th. he as not been to bad on the chemo not as ill as one was led to believe but other complications have arose such as,dizziness, falling,Aphsia,this is one of the things I find very trying he cant commuicate what he is saying makes little sense to me or others around him reading, writing,and spellingis also a major problem. The outcome of this vile form of cancer isometime very bleak,they have given my husband the same odds as most people with this thing 18mths-2yrs but he has problems as the brain is swollen and the medical staff are concerned as they cannot get it to subside he is living on sterode tablets,that in itself is not good, I cry a lot but you have to get up and get on with it,how he copes with it I dont no.
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Avatar_f_tn
has anyone heard if this is hereditary?? mds say no but my father diagnosed with it and 35yrs ago his mother was diagnosed with  a brain cancer that "came back" had surgery on it but died d/t complications. they say normally males get gbm but... Just concerned have 3 brothers and 2 sons...My youngest son had a venous malformation called a hemangioma beghind his right ear when he was small..which is a congenital birth defect, he is ok now, but makes you wonder what you cant see, ya know???
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808425_tn?1371095928
My 44 year old  brother has been diagnosed with grade 4 glioblastoma / grade 3 anaplastic astrocytoma. He started having problems just over a year ago, and was initially told it was anxiety. I argued with the doctors then, knowing it was something far worse. After all, we know our brothers and sisters better than anyone, right? After ct scan showed nothing, which we were later told actually did show something, but they just didn't see a real problem, they sent him home. A month later, an mri with contrast showed the mass. Oh, it's just a low grade tumor, non-aggressive, you've probably had it for years....we'll just do mri's every 2 months or so. BAM! 3 weeks ago, his speech deteriorated into jibberish, he could no longer read, and he was falling. A week and a half ago, the tumor (6cm) was removed and sent for the usual tests. We got our answers yesterday. Needless to say, NOT what we wanted to hear. Now what? If he's had this thing at least a year, by the way, they didn't even want to do a biopsy for the last year..... what are his chances? How long do we have him with us from this point? I just want to scream and cry and hit something...... :'(
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Avatar_n_tn
My Beloved Wife Kat just passed away on April 7th 2011. Kat was only 46 when she passed away. She was diagnosed on July 23rd 2011 with a large 5.5 CM by 4 CM in her right frontal lobe. She had the tumor "debulked" on July 26th and the pathology test confirmed it was a GBM 4. My wife and I are natural people and we were adamantly opposed to radiation and chemotherapy. Moreover a number of doctors including my wife's oncologist admitted privately that chemo doesn't help against GBM 4. Now I must state at the outset that NO ONE in the medical community told me exactly what my wife was dealing with. All they told me was that it was the most aggressive brain cancer there is. The neurosurgeon told my wife it was terminal but I was not present at the time and my wife chose to never mention to me what the neurosurgeon told her. I must admit, when I did a little research on it after the results came back I was in a state of denial. I figured there must be something in nature that could beat this thing. So we tried a number of natural methods but another tumor came back and on October 23rd 2010, she suffered a massive seizure.This time the tumor was 6 CM X 5 CM and lesions started appearing in different parts of her brain. So she stayed in the hospital for six weeks and she went ahead with 3 weeks of "palliative radiotherapy" which we were told would extend her life for up to four months. Thats another thing...after this thing came back, these palliative care people will pop up out of nowhere and they will keep chiming in with "all we can do is make the patient comfortable, she will die from this."  You have to watch out for these palliative care people if your loved one is in the hospital. My wife wasn't drinking enough water and she became very dehydrated and suffered severe wretching. I got the nurses in the neuroward to give her an IV to hydrate her with saline solution. Then behind my back, this palliative care doctor took my wife OFF the IV explaining, "Its palliative care. We just want to make the patient comfortable" which is an oxymoron since my wife was suffering from horrendous dry heaves from not being hydrated. So I raised a hue and a cry with my wife's Oncologist and he overruled the palliative care doctor and got my wife back on the IV saline drip. I repeat, my wife COULD NOT drink fluid at the time and this palliative care doctor was content with letting her die in the hospital and I'm sure she would have.  Anyway, this is what you will have to expect if you or your loved one is newly diagnosed with GBM 4. Understand that after my wife was discharged from the hospital after her palliative radiation therapy, we brought Kat home and cared for my wife until the day she passed away. We DID NOT put her in a hospice and I am not making a value judgement against those on this forum who had no choice but to put their loved one in a hospice. My heart goes out to all of you. I understand, believe me. So I was in a perfect position to watch firsthand what happens to a loved one when their condition deteriorates: She or he will become bedridden eventually. The patient will need to be on dexamethozone a.k.a. dexadron steroids and the dosage will need to be increased over time. The ability of the patient to eat and drink will start to slow down and eventually stop altogether. As the ability to eat, drink and talk declines, advise your palliative care nurses of this and they will work through your Primary Care Physician to increase the Dex steroid dosage accordingly. This will help temporarily. It is important that the patient take not only the preventive anti-seizure meds but the carer must have the valium derivative liquid handy so that you can stop a seizure in its tracks. We were NOT provided with the valium derivative when she was sent home after the first tumor was removed. She could have used some of that stuff when she went through the big seizure on October 23rd when the second tumor came back. Water in the brain mayl make the patient EXTREMELY susceptible to seizures. If the patient is going to stay at home its best for you to rent out a real hospital bed. This will make it easier on the patient, on the home carers and on the community nurses and palliative nurses who occasionally visit your home to give enemas etc. The top half of the bed will be tilted upward to allow the patient to eat and drink or take meds if they can still take meds orally. Afterwards, the top half of the bed will be lowered to allow the patient to sleep. The motion of lowering the top half of the hospital bed to a flat or slightly raised position may trigger a seizure, so lower the top half of the bed incrementally with one person cradling the head and one shoulder of the patient so that it doesn't snap backwards. Be careful when rolling the patient on his or her side to sleep because the rolling motion may trigger a seizure. The patient may be more liable to have a seizure when being rolled on one side vice the other side so take note of that. The best anti-seizure meds is the liquid valium derivative "Revitrol" rather than keppra or dylantin. Bring this up with your palliative care nurses and they will work things out with your primary care physician because eventually, the keppra and the dylantin will not stop seizures. (not all late stage GBM 4 patients have seizures towards the end.  This is just an FYI). Hospital bed mattresses are pretty hard so try to get the palliative care people to provide you with an air mattress or failing that, rent one. Eventually the patient won't be able to take meds orally so he or she will need a subcutaneous needle inserted into the belly in order for the person to take pain killers, liquid steroids, antiseizure meds, anti-nausea meds etc. Only the liquid valium type stuff will prevent seizures and stop them in their tracks once they do occur. Eventually as the condition of the patient deteriorates he or she will need to be on a "Syringe Driver" which will go in through a second subcutaneous entry.The syringe driver will give the patient all the necessary meds on time release basis. A palliative care nurse will load up the syringe driver once a day. It is important while the patient can still talk and has some degree of functionality to try to get the patient outdoors as often as possible when the sun is out. Take your loved one to the park or the beach or to the movies because eventually you won't be able to do this. Brainhospice.com is a great site to go to in order to get an idea of the timeline so you know the signs of impending death. The patient will start to lose the ability to speak or start to speak in fragments or may repeat the same sentence or sentence fragment over and over and become very frustrated. Just love on them anyway and don't talk to them slowly like they are a child. They will resent it. My wife was a true intellectual and watching her mental decline was perhaps the worst part of this. You will reach a point in your heart where you will WANT your loved one to pass away so they will not suffer anymore. ALWAYS REMEMBER...we are wearing BODY SUITS. Our real selves are Spiritual in nature. So your loved one will merely go through a transition phase into their next level of existence. You will spend more "time" with your loved one in the afterlife than you will here in this earthly plane. Guaranteed. Nevertheless I will miss Kat and love her till the end of time. One day I will pass over and be with her again. I love you Kitty Kat. We will meet in Heaven. God Bless You. Thank You for being so warm hearted, and so loving and so uplifting.
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Avatar_n_tn
I erred when I wrote my wife was diagnosed with a mass on July 23rd 2011. Of course, I meant July 23rd 2010.
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Avatar_n_tn
Thank you so much for your sharing your thoughts. I'm so sorry for your loss. Your post is very helpful to my wife and I as she was just dx GBM4 on April 24, 2011. 6cm tumor removed from LF Lobe, considering temador and/or radiation. Additional tumors,kidney,liver,lung,lymph.53 yrs. Functioning @ 100% post surgery. Afraid the treatment will be worse than the disease.
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Avatar_f_tn
i would love to knoe exactally what his treatment was.  my husband is 37 was just diagnosed in may. had surgery, radiation & chemo by pill at same time as well. we r now going thru 6 rounds of new chemo. 5 days on & 23 off per month.  my email is ***@**** if u would contact me.  this success of survival i would like to know more about. we were told 22 months. i can accept that. my kids r 12 & 15 and my husband & i have been together since we were 13
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Avatar_m_tn
YES, THIS IS LIFE THREATENING DISEASE AND THERE IS NO ORTHODOX AVAILABLE, THE QUALITY LIFE OF PATIENT ALSO EFFECT, BUT ITS MANAGEMENT AND TREATMENT IS AVAILBLE IN UNANI SYSTEM OF MEDICINES. UNANI SYSTEM OF MEDICIEN IS OLDEST ONE ESTABLISHED BY HIPPOCRATES AND AVVICINA.  THIS SYSTEM IS BASED UPON HUMOURS AND TEMPRAMENT WITH NINE OTHER BASIC FACTORS.
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Avatar_f_tn
my heart is breaking as a very good friend of mine was just diagnosed with  stage 4, Glioblastoma tumour and has chose to not have the surgery or radiation being given 2 to 3 month. How many times have I said WHY
THIS IS NOT FAIR
IT IS TOTAL BS
I am scared for him and wish this was not happening
He refuses to talk about it and seems to be in denial but not sure
I have lost a lot of people very close to me family etc and I can not handle this happening to such a young man (48)
Heart broken Life can be so cruel sometimes!!!!!!!!!!!!
HELP :( !!!!!!!!!!!!!!
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Avatar_m_tn
I just read you story and hoping your husband is doing better. My son was recently diagnosed May 25, 2014. He's 29 yrs old and we are still in shock. I've been trying to stay positive. We're praying his chemo and radiation will help him.




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