Glioblastoma Grade IV

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  • cristina54
    cristina54 Member Posts: 2
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    GBM Grade 4
    Dear Beth: My husband of 32 years, (he will be 57 next August 25) was diagnosed with brain tumor on July 9, 2009. He had a craniotomy on July 13 and they were not able to remove it all. Pathology showed GBM-4. We are waiting for Radiations and Chemo (Temodor) to start by the end of this month. I will like to have an alternative and since you mention the doctor from Kosovo I will like to have more information about him. This is a very aggressive disease and finding different alternatives is very wise. Thank you for your post. Best regards!

    Cristina
  • cristina54
    cristina54 Member Posts: 2

    glioblastoma multiforme
    Shirley...I am so very sorry about your husband's recent diagnosis. My husband was diagnosed on 2/18/09 with a gbm grade 4. His tumor was the size of a golf ball and the surgeon was able to remove about 99%. He received 30 days of radiation, 42 days of temodar and has just completed his additional 3rd round of double temodar ( 300 mg daily). He will have 2 weeks off the temodar and will begin round 4 with the possibility of an increase in the daily dosage. Thankfully the only problems with his treatment have been the loss of his hair from the radiation and some tiredness from the chemo. He will have an MRI on 7/17 to see if the tumor has returned. With gbm the tumor is 99% certain to return in the same area as previously discovered. I don't know how much research you have done on this cancer, but if you do, be prepared for what you learn. This is a most ugly and mean beast that refuses to be restrained. It is extremely resistant to treatment and all that the doctors have told us is that they will treat my husband to give him more time. If you will google "gbm grade 4" you will link to a number of sites for info. Be VERY careful to not fall into some of the discussions that are totally depressing and will be almost more than you can read. I will check this site often and if I can offer any thing to you I will be glad to do so.
    I would suggest that you look at Dr. Henry Friedman at Duke Hospital in N. C. He is the premier renowned doctor in treating gbm. This is not a cancer that cannot be cured without the intervention by God. The doctors have not given us any information that will tell us that a cure is out there. We just pray daily and depend on the Lord to give us a miracle.
    We have been married almost 40 years and have two sons and a 4 year old grandson. Needless to say, this has just devastated all of us. You must try to be positive and enjoy every single moment that you have together. The battle is tough and the outcome doesn't look hopeful. I am so very sorry that we are all in this battle.
    We are still in a state of shock over all of this. My husband was healthy, worked, played golf and walked about 2-2 1/2 miles per day. He had a seizure and that is how our journey began. We will be praying for you and we covet your prayers as well.

    We are not alone
    Dear Grantsnana: My husband was also diagnosed on 7/15/09 with GBM-4. He will start Radiation-Chemo by the end of this month. Thank you for your words of encouragement. I have been married for 32 years and we have 4 children. The youngest is almost 14. My husband was also very healthy never got sick or had any hospitalization. This is very hard. Thinking positive and praying to God every day is helping us to go day by day, enjoying every minute that we have. Thank you very much for your encouraging words. You, your husband and your family will be also in our prayers. God bless you.
  • swimteach1
    swimteach1 Member Posts: 2
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    interested in alternative medicine
    Hi Beth,

    Interested in the alternative mediine from Kosovo. can you send me this information.My husband was diagnosed with a terminal brain tumor and it is aggresssive. Any information you can offer would be greatly appreciated.

    Thanks,
    Lynne

    P.S. Feel free to email it to my personal email address at
    [email protected]
  • hannacat
    hannacat Member Posts: 101

    GBM Grade 4
    Dear Beth: My husband of 32 years, (he will be 57 next August 25) was diagnosed with brain tumor on July 9, 2009. He had a craniotomy on July 13 and they were not able to remove it all. Pathology showed GBM-4. We are waiting for Radiations and Chemo (Temodor) to start by the end of this month. I will like to have an alternative and since you mention the doctor from Kosovo I will like to have more information about him. This is a very aggressive disease and finding different alternatives is very wise. Thank you for your post. Best regards!

    Cristina

    tumors
    my husband is having speech and other problems and i am worried about a brain tumor or aneurysm. i am a cancer survivor and have a need to know the facts while he is in denial. could you share the symptoms that led him to seek treatment. my prayers are with you.
  • sue Siwek
    sue Siwek Member Posts: 279
    hannacat said:

    tumors
    my husband is having speech and other problems and i am worried about a brain tumor or aneurysm. i am a cancer survivor and have a need to know the facts while he is in denial. could you share the symptoms that led him to seek treatment. my prayers are with you.

    the only way to tell that i
    the only way to tell that i know of is an mri. make an appointment with a neurologist and they will take it from there. an mri is non invasive, takes about 45 min.
  • deemullen said:

    Glioblastoma
    Hi Beth,

    I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.

    We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.

    Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.

    Dee

    Glioblastoma Grade4
    Dee,

    I would just be happy that the Doctors are able to have another surgery as an Option for your Boyfriend. If you can do it through the alternatives go for it.

    My dad has this Monster, he was Diagnosed in Nov.08 had surgery was in the hospital for a week and sent home. He was doing great the first MRI showed they got it all, the second showed it was coming back but the Dr was unsure at first So they re did it 3 months later and it has grown back.
    He has7 more Radiaition treatments and them maybe Chemo but he is not listed as a surgical candiate. So if your Boyfriend can have another surgery then I would take that opportunity and run with it. Sorry if it shoulds a little harsh I don't mean it to sound that way. I am just happy that he has that option.
    My Dad is listed as Uncurable, he's taken the Tremador and it didn't work for him. So they are going to do another kind of chemo, that is if it is an opion. My mom has to talk with Hospic and set that in motion because of how aggressive this GBM is.
    So take all the options you have and spend as much time with him as you can.
    Enjoy all the time you have with the people you love. I hope and pray for all that are fighting this Monster that they have the power to beat it.
    My dad looks good and you wouldn't know that he has it unless your told but his Doctors have said it could turn fast. We are not giving up but it does make it a little harder to keep spirits up.
  • Venoir
    Venoir Member Posts: 1

    interested in alternative medicine
    Hi Beth,

    Interested in the alternative mediine from Kosovo. can you send me this information.My husband was diagnosed with a terminal brain tumor and it is aggresssive. Any information you can offer would be greatly appreciated.

    Thanks,
    Lynne

    P.S. Feel free to email it to my personal email address at
    [email protected]

    Alternative therapies
    Hi Lynne and anyone else who is interested. I am a cancer survivor of nearly 7 years since diagnosis. I had aggressive breast cancer and opted for a mastectomy to avoid radiation and chemotherapy and then went to see Dr Nicholas Gonzalez, MD in NY. Dr Gonzalez was trained at Cornell in immunology and presently treats nearly all cancer types many times with great success. He has treated people with metastatic cancer who are not merely surviving, but thriving on his protocol and he has treated a few pancreatic cancer patients who are doing well years after their terminal prognosis. Here is his website: www.dr-gonzalez.com for further details. He is brilliant and honest and very ethical.

    However, if I had brain cancer I'd be off to Texas to see Dr Burzynski http://www.burzynskiclinic.com/ who is also an MD with a great track record. I have read testimonials from his patients some of whom had Stage IV brain cancer and who have been in remission for 10 years. Dr Gonzalez knows Dr Burzynski and endorses his methodologies. God only knows why more people don't go to him - or either one of them. One reason could be expense, because Burzynski has to pay for his research and his facility from what he receives from patients and so his treatments can be expensive...however, what is money without health? And your husband might be accepted into a clinical trial which could be free. I wish Ted Kennedy had gone to him.) I would think that if you were diagnosed with brain cancer, you would have nothing to lose if you went to Dr Burzynski. He won't hurt you and he might help you whereas if you go the radiation/chemo route, it will hurt you and it won't help you.

    Anyway, I hope this helps and that you find a way to combat your husband's cancer. Bless you and your family. Good luck. May you find peace on your journey.

    Venice
  • deemullen
    deemullen Member Posts: 3
    deemullen said:

    Glioblastoma
    Hi Beth,

    I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.

    We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.

    Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.

    Dee

    glioblastoma
    My boyfriend has ended temodar and has just begun avastin. That is the next drug to be used in the fight against this hideous disease. I'm not sure how effective it will be. He is devastated by Teddy Kennedy's death since this is the same cancer that killed Mr. Kennedy. He seems to be forgetful, a bit unsteady on his feet, but otherwise looks pretty good.

    It's a very lonely time for me since we can't do a whole lot together since he gets tired. No hiking or biking so I have to go alone. He takes a lot of naps which I encourage him to do. we just go on day by day.
  • Rustycat
    Rustycat Member Posts: 1
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    Kosovo Dr and treatment
    Hi Bethanyd,

    My Mum was just diagnosed on August 5th with GBM Grade 4. She had the primary tumour removed by surgery the day after and was home a week later. She just started a combination of radiation (5 days a week for 6 weeks) and chemo (Temodar) on Tuesday of last week. The chemo was making her sick for the first couple of days, but now the Maxilon (anti-nausea tablets) has kicked in, she's doing OK so far. It's early days yet though and the treatment makes her extremely tired.

    I'd be interested to hear more about the Dr in Kosovo you contacted and also what medicine he told you to order. I also wondered, as I read your entry, whether your Dad was able to have surgery? I hope he continues to do well.

    Rusty.
  • RLR
    RLR Member Posts: 36
    deemullen said:

    Glioblastoma
    Hi Beth,

    I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.

    We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.

    Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.

    Dee

    GBM stage 4
    How long has your boyfriend had the GBM 4? I too have GBM4.at 54 years old I was diagnosed on 12/15/08 and had surgery on 1/13/09. I also had the 6 glio-wafers at the time of surgery. I went through 6 weeks of radiation and have been on Temadar chemo ever since. My doctor says I will be on chemo for at least a year. My last MRI on 7/24 the doctor said the tumor was the same size ,no growth. I would like to see it shrink but he says as long as it is not increasing he said that is good and is happy. My next MRi is tomorrow 9/11/09.
  • georgegnm
    georgegnm Member Posts: 2
    deemullen said:

    Glioblastoma
    Hi Beth,

    I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.

    We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.

    Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.

    Dee

    37 GBM 4 male survivor
    I have been battling this tough disease since may 2008. From the beginning I started a strict macrobtics, vegan diet. There is no growth. the Mri's have been clear the doctors have been shocked. I believe the change in my environment and food has saved my life.I was only given 6 months to live. I laughed at the doctors and told them defeat will never be an option. Any questions please ask me anything.
  • Beckymarie
    Beckymarie Member Posts: 357
    deemullen said:

    glioblastoma
    My boyfriend has ended temodar and has just begun avastin. That is the next drug to be used in the fight against this hideous disease. I'm not sure how effective it will be. He is devastated by Teddy Kennedy's death since this is the same cancer that killed Mr. Kennedy. He seems to be forgetful, a bit unsteady on his feet, but otherwise looks pretty good.

    It's a very lonely time for me since we can't do a whole lot together since he gets tired. No hiking or biking so I have to go alone. He takes a lot of naps which I encourage him to do. we just go on day by day.

    glioblastoma
    My husband is curently on avastin. He was diagnosed in March. The tumor is inoperable so had the 6-week course of radiation and temodar. The initial MRI showed a decrease in the tumor volume. Unfortunately, the next MRI showed substantial growth. Was your boyfriend's tumor operable? It is very lonely. We also had a very active social life. Now nothing is the same. It is the unknown that is so hard. I hear so many positive stories about brain cancer patients living out several years, but wonder what their quality of life is like. Our oncologist is trying to be positive, but has said that even though 25-30% of people diagnosed with Lv. 4 glios are living longer than a year, 70-75% do not. I don't know if a tumor that is operable has a better prognosis than one that is inoperable, or is it how patients respond to the drugs? I wish your boyfriend luck in fighting this disease.
  • lilpie9602
    lilpie9602 Member Posts: 1
    Grade 4 brain cancer
    My mother in law was just diagnosed with grade 4 Brain cancer, and it seems like I am alone even though I have my bro in laws and hubby. I am very close with her and have been married to my hubby for 9 years, Is there a cure for Brain cancer does everyone seem to lose the battle???
  • cpapa1084
    cpapa1084 Member Posts: 1
    MAJW said:

    DR. FRIEDMAN
    I too, in going on this journey with my best friend, understand that Dr. Friedman at Duke is the premier physican in the treatment of GB.........I would certainly try for an appointment with him......my friend has her upcoming MRI on July 20........may I ask for your prayers for her.......she is 51........and please know that I am keeping you all in my prayers..........
    God bless each and everyone of you.......

    From what I hear Dr.
    From what I hear Dr. Friedman promises you the world and doesn't follow through
  • Tiffany88
    Tiffany88 Member Posts: 1
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    GBM Grade 4
    My mother was recently diagnosed with GBM Grade 4. Inoperable. Is there any alternatives out there to buy some time. Please help me. I am very sad and desperate.
  • Beckymarie
    Beckymarie Member Posts: 357
    Tiffany88 said:

    GBM Grade 4
    My mother was recently diagnosed with GBM Grade 4. Inoperable. Is there any alternatives out there to buy some time. Please help me. I am very sad and desperate.

    Lev. 4 gliobalstoma
    Tiffany....very sory to hear about your mom. Know what you are going through as my husband with diagnosed in March. He went through the standard protocal of radiation and chemo and we are now on avastin. We are hoping to buy some quality time and overal he does seem to be doing okay. Wish I knew what the future will bring. Good luck to your mother. Stay strong.
  • sue Siwek
    sue Siwek Member Posts: 279
    Tiffany88 said:

    GBM Grade 4
    My mother was recently diagnosed with GBM Grade 4. Inoperable. Is there any alternatives out there to buy some time. Please help me. I am very sad and desperate.

    go to the nearest teaching
    go to the nearest teaching and research hospital and get a second opinion. they will have the latest protocols to treat your mom. it is hard to deal with this she is your mom but, realize that she has been given an overwhelming diagnoses and you can direct her when she feels so helpless. don't know where you live so my suggestion is to google where the best place in your state or near your state for the latest treatments. you cannot accept treatment at a hospital that is not a teaching and research hospital. for instance, my husband was diagnosed with an anaplastic astrocytoma grade 3 and the drs. said he couldn't do much. my son got on line and found henry ford hospital in our state and his father has survived nearly 10 yrs. find the best hospital near you, this is important because if you go too far away the family support will not be there. we had an 1 and 1/2 hr. drive each way but it was well worth the drive. good luck. keep this site posted.
  • pinzou
    pinzou Member Posts: 2
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    GBM 4
    My daughter has just been diagnosed with GBM 4. She had the tumor removed on December 15,2009. She is soon to start radiation and chemo but I would be very happy if you could email me some information on the Kosovo's Doctor. My thoughts and prayers are your Dad and your family. Email: [email protected]

    Mario
  • NCAA XC
    NCAA XC Member Posts: 25

    Grade 4 brain cancer
    My mother in law was just diagnosed with grade 4 Brain cancer, and it seems like I am alone even though I have my bro in laws and hubby. I am very close with her and have been married to my hubby for 9 years, Is there a cure for Brain cancer does everyone seem to lose the battle???

    Greetings from GBM4 battle at MD Anderson
    Where my wife got a great report yesterday!
    She had her second craniotomy in September and after chemo/radiation we came back down to Houston from Indianapolis on January 4th where MRI's showed no activity and no cancer.
    She had all of her tumor removed here in Houston (3cm) after the doctors back home left 80% in her brain and said they could get no more.
    We looked in the US News and World Report and found what at the time was the number 1 cancer center in the US and just made the call.
    Don't know if it will last, but the MD Anderson Cancer Center certainly gave me and my wife HOPE and so far so GOOD!
    She starts on a clinical trial next week....
    Check ups at MD Anderson every 8 weeks afterwards..

    Keep up the fight!
  • Dante
    Dante Member Posts: 9 **
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email [email protected]

    My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

    Beth

    GBM
    Hi,
    My husband (50 years old) was just diagnosed with a glioblastoma multiform grade 4 on his brain stem. They say it can't be operated on and give us a 4% 1 year survival time. I need help. Any information you could give would be appreciated.