Brain cancer(Glioblastoma grade 4)

isaiah43

MsDenise said:

On January 7th, my mom will turn 69, like your mother, she also has GBM Grade IV. She just celebrated her 5th year of life following her first craniotomy. My mom still lives alone and is very independent, although she can not drive any longer. She had her 1st craniotomy 11/97 followed by 6 weeks of radiation. Then we went to UCSF where she had the gamma knife treatment. She had her 2nd craniotomy 3/03. In May we went back to UCSF for another consult. They decided to put her on Temodar late May. She just finished her 7th round of Temodar and is doing great. According to oncology, she will be going off the Temodar within the next month. My mother has done terrific on the chemo drug. She is still living on her own and taking care of herself without any outside assistance. Her doctor's do not know if it's the Temodar or her great outlook on life and her positiveness that keeps her going. Please tell you mom to have faith and don't EVER give up, I truly believe this is why my mother has made it over 5 years now! Good luck and best wishes to you and your family. Denise

Brilliant!! Well done o her
Brilliant!! Well done o her and you.

postmyviews

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.

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

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

madisonmuzz

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 !!

GBM is a killer but you could be excused
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

madisonmuzz

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

Looking for strength
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

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

Dear auntnita611
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

momsworld said:

Dear auntnita611
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

Helping a Friend...
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!

Radhika Divecha

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

GBM grade IV
Hello Tom,

Its heartening to read that people have beaten GBM! MY 10 year old daughter has a grad IV GBM too and has been on chemo for a year (Non operative) she has had radiation too and now we are still undergoing another 6 months of chemo (Temodol). But its a fact that we are living in the constant fear that the tumor will start re-growing at any point in time and we may not catch it in time. I'm looking for a miracle too!

Radhika

Eaglewings

Scottgri said:

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

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

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

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

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

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

gb26

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

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.

ankush

Radhika Divecha said:

GBM grade IV
Hello Tom,

Its heartening to read that people have beaten GBM! MY 10 year old daughter has a grad IV GBM too and has been on chemo for a year (Non operative) she has had radiation too and now we are still undergoing another 6 months of chemo (Temodol). But its a fact that we are living in the constant fear that the tumor will start re-growing at any point in time and we may not catch it in time. I'm looking for a miracle too!

Radhika

Hello Radhika,
Just wanted to

Hello Radhika,

Just wanted to check the status of your daughter, I have a nephew of the same age diagnosed with GBM IV in the pontine.

Any information would help

 

Thanks

Ankush

AshleyMZ

My grandman was just diagnosed with Glioblastoma stage IV

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

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

idogi

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

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?

maria isabel

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 there

hi there,

my mum was diagnosed on the 3rd of december, since then she has had surgery, radio and chemo, she is about to start her 5 days a month temodar. In DUKE university (USA) they are taking patients for ADN vacciantion, they are very helpfull, Also my mum has been doing very very well since taking extra suplements, like GRAVIOLA, CURCUMIN, KRILL OIL, MUltivitamins....and a bath with Salt every day, 2KG of marine salt for a full bath or 1 KG for half bath.

Also if his tumor was METHOLISED (in the biopsy) he might be better on AVASTIN? do not give up, there are survivors with GLIOBLASTOMAS and what they eat can make a difference too! my mum now hardly eats bread, flour, pasta, biscuits....and all those things that nutricionally do not give her anything, everyday we liquidised fruite and veg, she eats lots of fresh fruit, fish, organic chicken, alkaline water.....no sugar (sugar does nothing good to your body, is all processed!) and she looks better now than ever, she skin in 3 weeks of eating so healthy is brilliant, her blood test are so good that the oncologist says is like she is not having chemo....

you can email me if you wish yeyes29@hotmail.co.uk

Good luck

isabel x

alexyj23

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

I'm going through the same

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

melevy

Radhika Divecha said:

GBM grade IV
Hello Tom,

Its heartening to read that people have beaten GBM! MY 10 year old daughter has a grad IV GBM too and has been on chemo for a year (Non operative) she has had radiation too and now we are still undergoing another 6 months of chemo (Temodol). But its a fact that we are living in the constant fear that the tumor will start re-growing at any point in time and we may not catch it in time. I'm looking for a miracle too!

Radhika

Get more information!

Have your neuro onctest your tumor for MGMT Methylation. If you tumor is methylated, it will be more sensitive and it's DNA more easily damaged by the temodar.

BJ Mullins

New Diagnosis and scared

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

BJ Mullins said:

New Diagnosis and scared

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?

 

hi there

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

njecab

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?

New Treatment

 

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/