Brain cancer(Glioblastoma grade 4)

isaiah43 said:

Gioblastoma multiforme grade 4
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 said:

GBM is a killer but you could be excused
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 !!

auntnita611 said:

Looking for strength
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

TAremote said:

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

sweetokielady72 said:

RE:Brain Cancer Glioblastoma (Grade 4) *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

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.

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.

TAremote said:

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

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?

missy 1994 said:

please help

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

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

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?

idogi said:

GBM Grade 4 - Homeopathy

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?

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/