Glioblastoma Grade IV

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

doctor?
Hi,
I've already emailed you but am hoping that maybe you still check this page. Could you send me any information you have or even a name of this doctor in Kosovo? I'm looking for anything at all that may help.
Thanks

Phylh said:

GBM
Amanda how is your Brother doing, my sister was diagnosed with GBM 4 late August 2011 they were able to remove 90% of it she is going into her 3rd week of chemo and radiation, I'm looking for any info. Thanks

GBM
I am writing you because my mom is very sick.I would like to mention in the beginning that we live in Serbia and that makes a situation worse.
My mom had GBM grade IV diagnosed in July 2010. , she had an operation on 07.08.2010.. Than we waited for results of pathology which came 20.09.2010. and they told us it was GBM grade IV.We , my stepfather and I, decided not to tell my mom abot the grade of the tumor because her father had died of the same tumor 1969.Having in mind that she`s been always talking about that with the fear and very bad emotions we together with our family friend who is neurologist told her that it is grade II and that its not so bad.After that we went on 30 radiation sessions and after that 6 therapies of BCNU.Mom was doing well during the period of therapies.She was eating well,she was positive,I have been giving her vitamins every day ( immunomer,abc plus and ca/mg/zn of Natural Wealth),she was active as always and doing everything she always did.Than she had MRI in end of July that showed nothing,no tumor cells(this was 3rd MRI since the start of the therapy,all of them showed nothing) .In the mid August mom started acting kind a depressive which is nothing unusual for her.We went to our family psychiatric and he gave her anti-depressives,1/2 pill a day.Than a few days later she had a big problem with hernia and was urgently admitted to hospital and operated.After that operation 05.09.2011. everything went wrong.She came back from hospital very psychotic.Than she started sleeping a lot.We thought it was because of the surgery.But as the days went on ,my stepfather and I figured out that the tumor is back.Everything was so fast and she went out by her self last time on her birthday 02.10.2011..On the 03.10.2011. he helped me to take her to bank to do administration work.Till 10.10.2011. it was hell.She was sleeping,having headaches,she was not able to function or walk.On the 10.10.2011. we went to her radiologist without her because it was impossible to take her.She told us that by what we were telling her tumor has regrown and that she should not been put on MRI,only on scanner in the ER if the condition gets vary bad, and gave us a therapy , mannitol 250ml for 3 days and dexasone 2x2mg for 7 days and then slowly decreasing it.During the first week she came back.We were helping her but she could do many things by her self.As they were decreasing dexasone the situation was worsening.In meanwhile we got help from NGO Bel hospice (http://www.belhospice.org/eindex.html) and since then they are helping us 1x week and deciding about the therapy.She is now on 6mg of dexasone,and last week she got 4 days of mannitol which did nothing, but she is at her worst.In diapers,not able to do anything(we are feeding her and giving her fluids,she can`t talk,her left side is useless,both arms and legs don`t function ,her neck is in spasm, we are putting her to sit/lay, she falls asleep while sitting or after we feed her,she is staring at tv but not know what`s on it),sometimes she has headaches or she complains that her eyes are hurting her.We don't know what we can do and our country is not the best place to be sick.My stepfather thinks that maybe we should try second surgery if the neurosurgeon wants to do it.We are going on a meeting with him on 16.11.2011..
Please can you tell me is there any chance that the surgery will help? Do you have any experience with that type of cases?Is there anything more that we can do to help my mom?I am open to all suggestion,and I am desperately seeking help!
Thank you in advance for taking your time to read my e mail and to replay to me!
My mom is 68 and I am her only child.I am 28.
I had time only for writing 1 post so I did copy&paste everywhere seeking help!
Best regards,

Phylh said:

GBM
Amanda how is your Brother doing, my sister was diagnosed with GBM 4 late August 2011 they were able to remove 90% of it she is going into her 3rd week of chemo and radiation, I'm looking for any info. Thanks

GBM SURVIVOR - PHILIPPINES
Hi Phylh,

Our daughter at the age of 22 diagnosed with GBM at the Chinese General Hospital here in Manila, Philippines on 1st October 2011 based on the results of CTSCAN & MRI. A combination of Linear Accelerator and Oral Chemotherapy (Temozolomide / Temozam)have been given by the Neurologist & Oncology for an estimated 33 therapy sessions. The therapy session is still ongoing and we are now at the 27th session. The condition of our daughter is continuously improving regaining her balances, eye sights and menstrual period. She can now walk and perform warm up exercises/stretching without feeling of dizziness / nausea. Hopefully and by the power of constantly praying / thanking to God and good help from her doctors, our daughter will be back to her normal life. I will keep posting on the recovery of our daughter.
Any comment from you - I'm sure it will be helpful - thanks in advance.

espurl said:

alternative therapies

Beth,
Please send any info on the alternative therapies used for Glioblastoma Grade IV. I am very proactive with my health and know that there is a melding of alternative and alopathic medcines. Again the alternative approach needs to the choice of the patient and their family, It is not my decision... I do want to be informed. I appreciate your assistance and concerns.

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

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!

How are you?
My dad was diagnosed with glioblastoma IV this month and had surgery. Now they are going to start his chemotherapy and radiation. I am hoping and praying for the best. How is your friend doing now days. And how are you doing, also.

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 son
hi beth could u forward me the details of the kosovan doctor as my son was diagnosed with gbm4 last sept he had surgery to remove as much of the tumour as possible but unfortunately as the 1st 2 chemos didnt work it grew bak however his 3rd chemo has managed to stop the rapid growing and his last 2 scans have been good the tumour is stil there but all the pressure has lifted from his brain so thats a blessing hope ur father is stil on the upgrade this news gives hope to all calum my son is 22 years old were from scotland and hes our very own braveheart!!!!!

medill2 said:

GBM stage 4 Female cancer survivor
I was diagnosed with stage IV Glioblastoma Brain tumer on May 23, 2010, only two days after I was married. I am 37 years old with three daughters, my youngest turned 8 last August. The diagnosis blew me away, I had been batteling headaches and pressure in my head for 7 weeks, every dr. I went to said it was a sinus infection, they put me on steroids for a week and sent me on my way. It was my new husband that took me to a different hospital and demanded a MRI, the news was devistating, All I remember was the dr. saying it's in a location where they can't operate, and I remember telling him not to give up on me, that I was a fighter and I was ready to give it my all. So now I'm in a fight for my life and the chance to watch my children grow, your story gives me the inspiration to keep fighting.

Why isn't he getting better?
My husband was diagnosed in August 2010 with a GBM IV. He had 3 surgeries and a total of 3 tumors removed in his frontal/temporal lobe. When radiation and Temador didn't work, and 4 new tumors grew,the doctor put him on a regiment of Avastin every other week for 8 weeks. In November the MRI showed the tumors gone...Rejoicing! He is in remission. However, he is still as weak and tired as he ever was. I was expecting to see some major improvement by now. At least that's what the doctors said should happen. He is still unable to walk unassisted without either a walker or assistance from a person. He stumbles often, has a terrible memory and talks crazy stuff that makes no sense. In fact it seems like he's getting worse, but had an MRI last week and other than the fluid on the brain, there has been no change. I don't get it.

Does anybody know how long it may take for him to get back to "normal". I've seen people online and on tv who are GBM IV survivors and they look great. I'm so burned out and tired. I just want my husband back.

Survivor
I just got back from the hospital were I had my latest check up and was happy to find out once again that I am still Cancer free. In 2004 I was diagnosed with a grade IV GBM and was told the prognosis was that I had 12 to 15 months to live and that the survival rate beyond 5 years was less than 5%. The doctor went on to say that he thought 5% was highly over estimated due to misdiagnoses. I told the doctor that what ever the percentage I was going to be on of the survivors. His response was that everyone says that. My retort was that the difference was that I believed it. I am now a 7 1/2 year survivor with no recurrences. I believe my success is due to four factors.

1. Believe you will be a survivor. I never got upset, never got depressed, and never gave up. A positive outlook keeps you strong through the ordeal.
2. Find the best surgeon you can. My surgeon was very aggressive. Many surgeons are afraid of causing damage to healthy brain tissue, so leave a "margin". This is a death sentence. My surgeon remove the entire tumor including digging out as many of the tendrils as he could. My only after effect is some reduced functionality in my left hand.
3. Educate yourself. Doctors tend to be overly cautious and to go with what is "the standard or care." The more you know the more you can participate in your own care. This is both empowering and effective.
4. Find a doctor with an open mind and try everything. I had a neuro-oncologist that was both excellent and open to new ideas (ironically,I out lived him. He passed away from cancer six months ago). I also found a naturopath who specialized in cancer treatment. Plus I researched ever experimental treatment I could find and convince my doctor to allow me to try them all at once. My treatment regime included the following:
-Radiation at the highest dose they would allow
-a year of BCNU, an older chemo drug. I requested the maximum does allowable. This nearly killed me and I end up having eight blood transfusions over the course of the year.
-two years of Temador the latest chemo drug. Also at maximum dose.
-High dose Celebrex at 4x the normal dosage taken during radiation and concurrent with chemo. Most doctors will discourage this due to the heart attack risk.
-Tamoxifen at 10x the normal dose. This caused tamoxifen retinopothy that nearly blinded me, and left me with some vision impairment.
-Shark Liver Oil
-Maitaki Mushroom powder
-Ruta Graveolen and Calphos (promising research on this is being done in India.)
-Vitamin B to keep your strength up.
I'm sure that by now there are other experimental treatments out there. Use them all so long as there are no known adverse interactions.
My last recommendation is don't fear death or pain. It is counter productive and may keep you from doing everything you can do. I firmly decided early on that I would rather the treatment killed me than the disease.

Good luck. Stay positive, stay strong, and you can beat this thing. I have.

twallen65 said:

Survivor
I just got back from the hospital were I had my latest check up and was happy to find out once again that I am still Cancer free. In 2004 I was diagnosed with a grade IV GBM and was told the prognosis was that I had 12 to 15 months to live and that the survival rate beyond 5 years was less than 5%. The doctor went on to say that he thought 5% was highly over estimated due to misdiagnoses. I told the doctor that what ever the percentage I was going to be on of the survivors. His response was that everyone says that. My retort was that the difference was that I believed it. I am now a 7 1/2 year survivor with no recurrences. I believe my success is due to four factors.

1. Believe you will be a survivor. I never got upset, never got depressed, and never gave up. A positive outlook keeps you strong through the ordeal.
2. Find the best surgeon you can. My surgeon was very aggressive. Many surgeons are afraid of causing damage to healthy brain tissue, so leave a "margin". This is a death sentence. My surgeon remove the entire tumor including digging out as many of the tendrils as he could. My only after effect is some reduced functionality in my left hand.
3. Educate yourself. Doctors tend to be overly cautious and to go with what is "the standard or care." The more you know the more you can participate in your own care. This is both empowering and effective.
4. Find a doctor with an open mind and try everything. I had a neuro-oncologist that was both excellent and open to new ideas (ironically,I out lived him. He passed away from cancer six months ago). I also found a naturopath who specialized in cancer treatment. Plus I researched ever experimental treatment I could find and convince my doctor to allow me to try them all at once. My treatment regime included the following:
-Radiation at the highest dose they would allow
-a year of BCNU, an older chemo drug. I requested the maximum does allowable. This nearly killed me and I end up having eight blood transfusions over the course of the year.
-two years of Temador the latest chemo drug. Also at maximum dose.
-High dose Celebrex at 4x the normal dosage taken during radiation and concurrent with chemo. Most doctors will discourage this due to the heart attack risk.
-Tamoxifen at 10x the normal dose. This caused tamoxifen retinopothy that nearly blinded me, and left me with some vision impairment.
-Shark Liver Oil
-Maitaki Mushroom powder
-Ruta Graveolen and Calphos (promising research on this is being done in India.)
-Vitamin B to keep your strength up.
I'm sure that by now there are other experimental treatments out there. Use them all so long as there are no known adverse interactions.
My last recommendation is don't fear death or pain. It is counter productive and may keep you from doing everything you can do. I firmly decided early on that I would rather the treatment killed me than the disease.

Good luck. Stay positive, stay strong, and you can beat this thing. I have.

Thank you
Thank you so much for sharing your history. I really needed to read something like this. I am afraid that I am slowly spiraling down to a place where I am losing hope for my son. He's currently battling an aggressive recurrence of an anaplastic oligodendroglioma. Your post renews my hope and refreshes my commitment to be positive and to continue to fight hard and hold on to hope.
Blessings to you!
Cindy in Salem, OR

tpot25 said:

no not everyone
I am still here. I am a 13 year survivor. I was 52 when diaginoised with stage4 glio blastoma multiforma.

GBM survivor
Hello and thank you for your inspiring message!
My father, John, and I are seeking help. He is 68 and was diagnosed with GBM grade 4 last December, had surgery, radiationa and temodar. He was switched to Avastin in October of this year. He is doing well, but we want a cure! Please share your insights on successful treatments and regimens.
Wishing you a beautiful holiday.
Best wishes,
Jennifer and John