Glioblastoma Grade IV

1234568

Comments

  • IamLaLi
    IamLaLi Member Posts: 1
    #142
    alutiiqmom said:

    Where was your treatment?
    HI:
    Thanks for sharing all that you wrote. Thanks for the positive outlook and attitude. Do you mind asking where you had treatment? Congratulations on another good scan! God Bless you.
    Edna

    Glio Experts
    Hello ..

    Looking for 2nd opinions.
    We live in Phila.

    Who are Glio experts you can recommend .. and why?

    Thank you for your replies!
  • JCM2468
    JCM2468 Member Posts: 4
    #143
    jeffballew said:

    Burzynski Clinic Houston
    I am enrolled in that clinic as of this month and have started a Gene Targeted Therapy Regimen. This clinic is curing inoperable brain tumors, including GBM. I am very hopeful... Be careful what you read, it's not a scam. email me if you are sceptical. also youtube "Burzynski Movie"


    jeffballew@nationsvs.com

    Burzynski
    Hi
    I'm just wondering how the Burzynski clinic went for you?
    I'm from Australia and
    My dad was diagnosed with GBM Stage 4 last year in August they cut the tumour out then (It was the size of a large orange) and they told us he would only live approx. 3 months as he had REFUSED any chemo or radiation as he doesn't believe in it at all.
    My dad was doing natural treatments and organic diets Etc etc which has worked out good as he is still here today and more positive than ever! one year and 2 months later, although the tumor grew back again he had brain surgery for a second time last week and they cut out what they could again.

    Now he is going to catch a boat to America early next year and go to Burzynski clinic
    We have been talking to the doctors there over phone and email and it sounds very promising, and the movie was just amazing to watch. only downfall is it is going to cost him a lot of money getting over there and all that

    So I'm really really hoping its legitimate
    Please let me know how your experience there went I would love to hear from you!

    Thanks
  • Genadey
    Genadey Member Posts: 1
    #144
    georgegnm said:

    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.

    info. on the vegan diet and strict macrobiotics
    We just read your post and we would like to ask you for more info. on the vegan diet and strict macrobiotics. Our dad has just been diagnosed a terminal Glioblastoma Grade IV Tumor. He lives in London. The Doctors wouldn't offer any kind of curative treatment, just some steroids (maximal dose of 8ml). It is very cruel and sad to let him without any hope. He is healthy otherwise and has a strong will to fight this monster :(. We would greatly appreciate if you could give us more info.
    Best Regards, Ljubica and Mike
  • rqueenjr
    rqueenjr Member Posts: 1
    #145
    Brain Cancer
    I was diagnosed in 2003 with an ATRT, Stage 4 Brain Tumor. (much like glioblastoma) I was supposed to live 3 to 6 months, at the most. I submitted to the medical treatments (rejecting some) I also meditated with prayer daily with a focus on removing the bad cells and replacing them with healthy ones. Do not accept the negative projections you may hear. Stay strong, convinced and do everything you possibly can to defeat this enemy. My battle with cancer lasted about 3 years. One month they did the regular cerebral spinal fluid test, and there were zero cancer cells. We were shocked! Maybe it was a miracle, maybe it was medical (although doctors repeated many times that then could only improve my quality of life and maybe extend my time slightly). Whatever the reason, I have been cancer free for about 6 years. I am married and have three daughters. Going to my first daughter's wedding this weekend.
  • only1life
    only1life Member Posts: 1
    #146
    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.

    avastin
    good morning Tiffany88 my wife has a brain tumor on the right side of her brain.there is hope. she had it operated on in june of 2011 a second one 3 months later.after 6 months of radiation.her mri.came back very good. now she is on avastin & termador.its not a cure but it seems to be working well. her mris look great.look into avastin & termador.dont give up hope.
  • JakePuppy
    JakePuppy Member Posts: 1
    #147
    MAJW said:

    Hang in there.......
    I can only speak from my best friend's experience with a glioblastoma multiforma, stage IV....She is 51.......she was diagnosed late October 2008......Had 4 1/2 hours of surgery first week in November.....her's was centrally located in the top of her head.......she had the surgery on a Wednesday and was home on Saturday, amazing! Very small amount of pain as the brain doesn't have pain receptors.....amazing, again! She, after 4 weeks began radiation, 6 weeks 5 days a week.......each treatment amounted to 15 minutes.....took us 45 minutes to get there! Her scalp looked "sunburned" but otherwise minimal side effects, although the radiation did cause hair loss.....(she looks fabulous in her wig!) She now has been on Termador, oral chemotherapy for the past 6 months and is doing absolutely GREAT! No side effects what so ever from the chemo...... According to her doctors the oral chemo works best for this nasty type of brain cancer. Her attitude has been fantastic! She and I have been best friends for 24 years and I must say, she is my HERO! She has a great support system, her husband, kids and many, many who love her......That is so important. Her first MRI showed NO CANCER..........hopefully they got it all before it had a chance for all it's "little fingers" to invade the rest of her brain. She has her next MRI and CAT scan in July......we are all praying for the same result!
    Your sister is in a living nightmare and will need all the love and support all of you can give. BUT please, don't listen to "horror stories".......EVERYONE and EVERY CASE is different! Don't allow NEGATIVITY around her, even if it means cutting toxic people off..........
    My friend is now part of my support system as I was diagnosed 2 months ago with breast cancer..two friends with cancer,we support one another and I must say, no one knows, other than one with cancer what one is going through.....I will be fine.......But her love and concern towards me is so uplifting.....I pray that your sister comes through all this, as well as your entire family.......with flying colors.......Best wishes and God bless!

    Giving me hope
    Just read your wonderful uplifting story about your friend. My husband has GBM 4 and had surgery on 11/5/12. The entire tumor was removed and a Glio wafer was inserted. He starts radiation and Temodar next Tuesday. I am absolutely sick with worry. He also has prostate cancer and in the middle of radiation treatments for that which are now on hold. I was diagnosed with breast cancer last December and am doing well so far. Horrible year for us. But we have faith and reading your post gives me some comfort that my husband can beat this monster. He is so upbeat and is always on the go. Nothing gets him down but sometimes I feel like I am going to fall apart. But I know I can't.
    Thank you so much for your post!!!
  • bugs_mommy
    bugs_mommy Member Posts: 24
    #148
    husband has stage IV GBM

    i, my husband was diagnosed with this aweful cancer in april 2011, had a surgery but they didn't get it all, so he has done radiation, and took chemo pills (temadol), well september 2012 he took 8 seizures in a row and didn't wake up..plus he had more in the ambulance...they found the tumor growing so they did another surgery, this time his speech was different, he had a hard time to  say what he wanted or explain what he wanted, he was so shaky,and his walking was a bit off. Well we had a great christmas, but dec 25th I noticed my husband was getting bad headache and vomiting, he was more shaky and he was walking poorly he had his MRI dec 28th and the 29th he was doing so bad that our nurse sent us to the hospital so here we r today, the result of his last MRI showed it grew so large and fast! so instead of his regular 4mg.of decadron he is getting 12mg to get the swelling down..now my question is, is it worth doing another surgery, or let it run its course as his doctor says...his doctor will talk to us more but just need opinions and advice thank u :) oh we have a beautiful 3 year old together and a beautiful 9 year old step daughter 

  • worried diane
    worried diane Member Posts: 1
    #149
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com

    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

    my story

    Hi. My brother was just diagnosed with gliobastoma. He went through 5 hours of surgery. They said they got the tumor; however, there a little fingers with surround the wound and they can spread the cancer to other parts of the brain. He is too weak yet to undergo radiation or chemo. He is a retired Anglican Bishop that has never been sick in his entire life. He is 70 years and I know would like to live a good more many years. We do not know what to do at this point. I read your testimonial and alternative therapies. I was wondering if you could give me some information as to medicine your dad was prescribed. We are from Canada. Thank you for helping.

    Diane

  • miskha
    miskha Member Posts: 3
    #150
    gbl IV

    HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

     

  • miskha
    miskha Member Posts: 3
    #151
    gbl IV

    HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

     

    fell free to contact me at my personal email: evitavitavita@gmail.com

     

  • miskha
    miskha Member Posts: 3
    #152
    gbl IV

    HI there. my my father (54 ) is diagnosed with grade 4 glioblastoma.he had a surgeon 8 years ago and radiotherapy and chemo.. but now it came back more maligant. we cant't have an operation because the tumor is in the basic gaglia. we only had cyber knife and temondal.  the predictions are bad but we stay optimistic so far.  i read about a doctor from kosovo. i would like to have some further information about him. tommorow he is going to have his MRI and i'm terrified.

     

    fell free to contact me at my personal email: evitavitavita@gmail.com

     

  • shiva_miracle
    shiva_miracle Member Posts: 2
    #153
    Stage IV - GBM

    Dear All,

    I need some help, my nephew 11 years old has been diagnosed with stage IV tumor in the  brain stem. He has undergone a surgery here in India on 08th Jan 2013 and now we are advised to undergo raidiation and chemo.

    We are skeptical whether to go for such therapies as we feel it will be more of a torture for a small kid and would seek help to know what if we dont go for such therapies.

     

    Even if we go for radiation or chemo the survival rate is almost "0", we are scared what kind of trauma the child and the family will undergo in the times to come.

    Please share your experiences so that we get some more insight on the above issues.

     

    Thanks in advance

    Shiva

  • maria isabel
    maria isabel Member Posts: 19
    #154
    glioblastoma grade iv

    hi there,

    my mum was diagnosed on the 3rd of december, she has had surgery succesfully and tomorrow we will start radiotherapy with chemeotherapy all toguether, the chemeotherapy orally, 7 days a week the radiotherapy 5 days a week. We are also giving my mum lots of natural suplements and we have cut off all sugars and yeast from her diet, she walks when she can to keep her blood oxigenated and we try to lead a normal life. When she was diagnosed the doctors told us that 3 to 12 months and I wanted to die. I think that medicine is not precised so I am just focusing that she is going to cope brilliantly with radio and chemeo and that we might feel rotten for a bit but then we will see the light at the end of the tunnel.....

    Sending you strength and we are not alone .... we can all help each other.

    Does anyboy knows how to get the best out of the radiotherapy and the chemeotherapy? the oncologist has just told me to give my mum the chemeo at home when is best for me but I wonder when is best? night? morning? they said empty stomach she has radiotheray in the morning, is the chemeo better before the radio or after?

    the oncologist is such a nice man but does not talk a lot and he seems completely against natural therapies while I am open to everything, diet, supplements, meditation..... hometopathy ... anything in such a desperate situation so anybody can help please email me. 

    thankyou 

    maria isabel

  • maria isabel
    maria isabel Member Posts: 19
    #155
    shiva_miracle said:

    Stage IV - GBM

    Dear All,

    I need some help, my nephew 11 years old has been diagnosed with stage IV tumor in the  brain stem. He has undergone a surgery here in India on 08th Jan 2013 and now we are advised to undergo raidiation and chemo.

    We are skeptical whether to go for such therapies as we feel it will be more of a torture for a small kid and would seek help to know what if we dont go for such therapies.

     

    Even if we go for radiation or chemo the survival rate is almost "0", we are scared what kind of trauma the child and the family will undergo in the times to come.

    Please share your experiences so that we get some more insight on the above issues.

     

    Thanks in advance

    Shiva

    Glioblastoma IV

    hi shiva,

    we had the same problem as you as the neurosurgean and oncologist gave my mum little hope (3 to 12 months) but she had surgery and it went brilliant, SURGERY IS A MUST then the only hope to neutralised the cancer cells is radiotherapy and chemeotherapy......I feel that if you do not go through this stages you are throwing the towel....also you can then help with nutricion, Tumeric is great, water ph 7.5, NO SUGAR, lots and lots of fresh vegetables, no red meat.....

    We can only try, the effects of the radiotherapy is not as bad as we think.....get advice from a different doctors, children are stronger that adults.

     

    good luck and do not lose hope.

    m. isabel

  • shiva_miracle
    shiva_miracle Member Posts: 2
    #156
    GBM IV

    Thanks Maria,

    I am from India and we hope that there are some natural therapies / homeopathy that works well under such situations.

    We have still not started with it however exploring such options, will definitely share if something comes up.

     

    Cheers

    Shiva

  • manwithnoname
    manwithnoname Member Posts: 402
    #157
    maria isabel said:

    glioblastoma grade iv

    hi there,

    my mum was diagnosed on the 3rd of december, she has had surgery succesfully and tomorrow we will start radiotherapy with chemeotherapy all toguether, the chemeotherapy orally, 7 days a week the radiotherapy 5 days a week. We are also giving my mum lots of natural suplements and we have cut off all sugars and yeast from her diet, she walks when she can to keep her blood oxigenated and we try to lead a normal life. When she was diagnosed the doctors told us that 3 to 12 months and I wanted to die. I think that medicine is not precised so I am just focusing that she is going to cope brilliantly with radio and chemeo and that we might feel rotten for a bit but then we will see the light at the end of the tunnel.....

    Sending you strength and we are not alone .... we can all help each other.

    Does anyboy knows how to get the best out of the radiotherapy and the chemeotherapy? the oncologist has just told me to give my mum the chemeo at home when is best for me but I wonder when is best? night? morning? they said empty stomach she has radiotheray in the morning, is the chemeo better before the radio or after?

    the oncologist is such a nice man but does not talk a lot and he seems completely against natural therapies while I am open to everything, diet, supplements, meditation..... hometopathy ... anything in such a desperate situation so anybody can help please email me. 

    thankyou 

    maria isabel

    you need

    to search for Ben williams, google his name and GBM

  • kiwimom
    kiwimom Member Posts: 2
    #158
    Genadey said:

    info. on the vegan diet and strict macrobiotics
    We just read your post and we would like to ask you for more info. on the vegan diet and strict macrobiotics. Our dad has just been diagnosed a terminal Glioblastoma Grade IV Tumor. He lives in London. The Doctors wouldn't offer any kind of curative treatment, just some steroids (maximal dose of 8ml). It is very cruel and sad to let him without any hope. He is healthy otherwise and has a strong will to fight this monster :(. We would greatly appreciate if you could give us more info.
    Best Regards, Ljubica and Mike

    hang in there

    My husband was diagnosed with same gbm 4 may 2012. Surgery may 17 most...98% gone. Cancer free for now. Chemo and radiation june july. Attitude is important. Laugh a lot. Dri nk magosteen juice and eat powered greens and raw protein from health food store.  I had breast cancer in july...surgery and cancer free...then brain aneurism in november....what a year....we are both doing good. prayer is most important!!!

  • james55
    james55 Member Posts: 1
    #159
    bethanyd said:

    GBM
    Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com

    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

    Beth, my father has GBM. It's

    Beth, my father has GBM. It's been 5 months since his tumor was removed.. The Dr. sent him home to die..  Do you still have The protocol from the Dr's in Kosovo??                 Thank you, James

  • maria isabel
    maria isabel Member Posts: 19
    #160
    shiva_miracle said:

    GBM IV

    Thanks Maria,

    I am from India and we hope that there are some natural therapies / homeopathy that works well under such situations.

    We have still not started with it however exploring such options, will definitely share if something comes up.

     

    Cheers

    Shiva

    Glioblastoma iv

    Hi Shiva

    just to let you know that my mum has had a whole week of treatment now, radiotherapy 5 days a week and oral chemeotherapy 7 days a week and she has not been skick at all, only a bit tired, I am also feeding her just fruit, veg, fish and pulses....no meat and lots of roots and alkaline water.

    she looks very well, i cant beleive it and I think that we can neutralised this horrible illness if we are persistant....but I also beleive that an agressive treatment is a must .

    good luck and dont lose your hope.

    m isabel

  • melevy
    melevy Member Posts: 4
    #161
    New here

    Hi all,

    I was diagnosed with a grade IV GBM on Dec 31, 2012. Great way to start the new year, huh? Fortunately, unrelated to the tumor, I had a minor accident, and my Dr, thought I had a concussion and ordered an MRI. The tumor was only 3CM, which I understand is rather small for an initial finding. It was located in an easily accessible location, and I had a 2 hour  surgery Jan 8 2013. The surgeon reported that he got all of it, including a small margin to ensure there was none left behind. I start temodar & radiation on Feb 7. My Neuro-oncologist says that "everything looks as good as it possibly can" at this time, and he has people in his practice at 15, 17, and 26 years post-diagnosis, so I guess he knows what he's talking about.

    I'm a 55YO male, and I live in the Chicago, IL area.

Discussion Boards