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Glioblastoma Grade IV

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  • Amanda G
    Amanda G Member Posts: 2
    Amanda G said:

    GBM Tumor
    My brother of 55 yrs of age just had surgery to remove a large GBM from his left frontal lobe. Him, his wife and adult children, live in California and my mom and dad and other sister live in Oklahoma. It is hard. His surgery went very well. Dr.'s were able to remove all the tumor that showed on the MRI. In which I understand can be a plus. They described it as, Dropping a sugar cube in a glass of water, they removed the cube but particles are still floating in there. I know he will undergo more treatment or treatments soon. He is physically fit and has always stayed that way. Now we have to work on keeping him in the right frame of mind. No major side effects from the surgery. A little delay in response sometimes. Comes and goes. The medications he is taking contributes to that. Surgery was a week ago Wednesday. He was home in less than a week. We read soo.. many negative things about this cancer. I know the medical facts are out there but remember the biblical facts are also. I can't walk on water, but Jesus let Paul do it. Keep that in mind. He is there for all of you. Send out your prayers to him to give the doctors the knowledge they need to heal your loved ones and the strength the family needs to get through these tough times. Love to all.

    GBM
    We have done a tremedous amount of research and have found a doctor at Cedar Sinai in California that is known as the Michael Jordan of neurology and treatment of GBM tumors. We are working on getting set up with him for my brothers treatment. He is home and off all pain meds except Tylenol and doing much better. His kids have put him on a special diet they found in their research. I know he's not loving that but we all should be treating our bodies better. Prayers to everyone and if you have any experience with this Doc., His name is Dr. Keith Black. I would love your input.
    Thanks everyone. :)
  • GBM Daughter
    GBM Daughter Member Posts: 1
    ambs108 said:

    Glioblastomas
    Hi,

    Im a 19 year old girl whos world recently came crushing down. My Dad was diagnosed with Glioblastoma stage 4 at the end of April 2010. Im currently living in Australia and my Dad lives in New Zealand. (there isn't as many support groups over here)

    My Dad is only 53 years young and before any of this happened he was fit and healthy. (although a previous smoker)Dad was originally admitted to hospital after experiencing extemely painful headaches. We knew it was something serious as Dad hates hospitals and avoids any medical practice at all costs. After having a MRI they discovered that my Dad had a large brain tumour. 8cm x 6cm x 4 cms on the left side of his brain. They immediatly put him on steriods in effort to shrink the tumour. He was kept in the hospital for around 2 weeks. He was allowed to go home during the day and had to return to the hospital at night so he could be monitored. A few weeks later the scheduled Dad's operation the surgeon hoping to remove around 40% of his tumour. The surgeon advised my Dad of all the risks involved with the brain surgery,they feared that Dads short term memory and speech could be affected, he told Dad that he may not be able to talk at all after the operation.

    After Dads operation he woke up talking much to all of our delight. The surgeon even managed to get out around 98% of his tumour which was fantastic news. It has since been just over 3 or 4 weeks since Dads operation and he is doing good. Slowly getting his memory back and his speech and concentration has improved significantly, although he gets tired very easily some days.

    He is due to start radiation either this week or next week. He will have this 5 days straight for 6 weeks and then he will start taking the chemo in pill form until after christmas.

    Every day and night I pray that Dad will still be around to walk me down the aisle or to meet his future grand kids.

    I love my Dad with all my heart and it is truely so upsetting hearing your 'bullet proof' dad get upset when he has to tell you the dreaded words .... "I have cancer"

    My Dad is the bravest and strongest person I have ever known and Im proud to call him Dad.

    xxx

    My Dad
    Hi. I wanted to know your dad is doing?
    My dad was diagnosed with GBM in Oct 2010 at 60 years old.
    We couldn't believe it and our whole world has been torn apart.
    He had surgery the first week of November to remove one frontal tumour but the second they could not remove. He did amazing after the surgery and they were able to resect almost 100%.
    He did six weeks of radiation coupled with chemo (Temodar) which he completed Dec 30th, 2010 and is also on decadron (steriod).
    During radiation he was feeling really good. After radiation he started doing chemo (Temodar) 5 days on and 25 off. The chemo has really made him very tired and weak. We just received the results from his last MRI on Apr 20 and there are no new growths! We were so relieved and so happy! Two days later my father became very weak, almost unable to walk. These were short episodes but very, very frightening. He spent most of the day sleeping and had no energy at all. I am concerned because if there are no new growths and we haven't started the next chemo treatment (therefore it has been almost four weeks since his last dose) why the sudden decline in his well being? He had a slight sore throat, so perhaps he was fighting an infection, we are not sure. When I called the doctor he suggested we increase his steriod to 4 mg twice a day. My dad had been on 2 mg once a day for the last 6 weeks. We have followed this advice and have notice some improvement. He also experience a new symptom on Saturday Apr 23 and again yesterday (Apr 26). On Saturday he said he lost the feeling in his left hand. He felt like there was no feeling in any of the digits. This lasted less than half hour and then the feeling returned. Yesterday he felt this on the left side of his face. He felt it was numb, like when you come back from the dentist. Has anyone had similar symptoms?
    I just want to know that we are doing all that we can. The nature of GBM is so aggressive and am so happy to hear that he has no new growths and that the chemo is helping to keep this beast under control. I just want to make sure that we are not missing out on anything else that we could do.

    My dad has given me everything and a wonderful, wonderful life. I just want to do everything I can to make sure he can be with us for many more years.
    Yvonne
  • Terry13
    Terry13 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
    My father-in-law was just diagnosed with the same GBM as your father was. I would like to know what the medications were that were suggested by the doctor in Kosovo. Since your posting is from 2009, I hope you will receive this and tell me how it helped your father. Thanking you now for any response you might have.
  • EDClarke
    EDClarke Member Posts: 5
    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 Ya'll doing? I hope
    How are Ya'll doing? I hope all is well because your stories are inspiring! My husband is 26 and we have a 1 year old child. He was just diagnosed with a Level 4 GBM multiform. Our fight has just begun...
  • msomawas
    msomawas Member Posts: 22
    EDClarke said:

    How are Ya'll doing? I hope
    How are Ya'll doing? I hope all is well because your stories are inspiring! My husband is 26 and we have a 1 year old child. He was just diagnosed with a Level 4 GBM multiform. Our fight has just begun...

    Hello
    Hello. My husband was diagnosed on 7/3/2011. We are a little over a month into our fight. My husband is 62. Your husband is so young, and you with a small baby. I am so sorry. David started treatment on 8/3 - 6 1/2 weeks of radiation and chemo. Is your husband's tumor operable? David's is not.
  • EDClarke
    EDClarke Member Posts: 5
    arameyh said:

    my dad just had most of his
    my dad just had most of his tumor (glial blastoma grade IV) removed on thursday, and was sent home on sunday. his treatment plan includes surgery, radiation, and chemo. his operation went beautifully and he is feeling great, way better than before..! though he still has headaches. we are awaiting more info to come from his upcoming appointments, but so far, so good! keep your sister's spirits up:) and take things one day at a time.
    ps my dad is 49... they said his tumor was probably there 3-6 months and was almost the size of a tennis ball.

    If you are still out there,
    If you are still out there, how is your dad doing?
  • thebrother
    thebrother Member Posts: 2
    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.

    wanted to check on your story
    How are you doing?
  • JVis
    JVis Member Posts: 1
    ritakron said:

    Kosovo
    Hi - do you have the information on the Dr. in Kosovo?
    My mother was diagnosed with Stage 4 glioblastoma - please help!

    Kosovo Dr.
    Did you get the Dr's information from Kosvo? My mom is in the same situation yours is. Thank you!
  • patricia-mary
    patricia-mary 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

    dr kosovo
    do you have the contact information for the doctor in kosovo
  • msomawas
    msomawas Member Posts: 22
    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.

    Hope
    Your comments give me hope for my husband and I would be interested in the changes you made. I do not know if he would agree to be vegan, but I would do anything to save his life.
  • jstbeunme
    jstbeunme Member Posts: 5
    djbay01 said:

    GBM Doctors
    My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is [email protected] I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

    kosovo
    did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is [email protected] thank you so much.
  • jstbeunme
    jstbeunme Member Posts: 5
    djbay01 said:

    GBM Doctors
    My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is [email protected] I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

    kosovo
    did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is [email protected] thank you so much.
  • jstbeunme
    jstbeunme Member Posts: 5
    djbay01 said:

    GBM Doctors
    My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is [email protected] I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

    kosovo
    did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is [email protected] thank you so much.
  • jstbeunme
    jstbeunme Member Posts: 5
    djbay01 said:

    GBM Doctors
    My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is [email protected] I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

    kosovo
    did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is [email protected] thank you so much.
  • jstbeunme
    jstbeunme Member Posts: 5
    djbay01 said:

    GBM Doctors
    My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is [email protected] I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

    kosovo
    did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is [email protected] thank you so much.
  • I_Promise
    I_Promise Member Posts: 218
    megu2day said:

    Clinical trial
    Hi!

    Just got back from UC San Francisco today with my Mother in law (stage 4 glioblastoma. they are doing clinical trials for a vaccine that utilizes the tumor itself as a protein to adhere to the white blood cells. It is themn re-injected into the patient to "retrain" the body to kill the cancer cells. My Mother in law will be undergoing surgery on Thursday the 22nd. then a course of radiation and chemo. If the cells quit reproducing, this protocol is good to go. We are in dire straits as well, so this is our beacon of hope.

    Prayers to your Dad,

    Greg

    Hi Greg
    if you still are on this site... could you give us an update regarding your mother in law? I have been following this particular vaccine trial with interest and hope.

    best,

    Julia
  • jeffballew
    jeffballew Member Posts: 9
    cpapa1084 said:

    From what I hear Dr.
    From what I hear Dr. Friedman promises you the world and doesn't follow through

    Dr Friedman
    I go to Duke but see Dr. Peters who serves under Friedman.. what I like is that they don't talk in Timelines and statistics. Dr Peters has inoperable GBM Patients she hsa treated for 12 years or more and are still doing fine. The Preston Robert Tisch Brain Tumor Research Center at Duke is phenomenal, I like that I can still hope for a cure. I am 38 and have a Grade IV GBM that was surgically removed at Duke. Duke is close to a clinical trial of the Polio Virus being injected into the GBM site, and they are also extremely proactive in research and therapy. The hope there is a CURE, not treatment... Duke being a teaching Hospital is assuring as they want to advance the survivial of GBM patients.. they keep me positive.
  • ravirajagopalan
    ravirajagopalan Member Posts: 7
    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

    Hello
    Hi Beth, thanks for the response. My wife has just been diagnosed with GBM grade 4. Any help you can give will be appreciated. We will be seeing an oncologist soon.
  • Phylh
    Phylh Member Posts: 1
    Amanda G said:

    GBM
    We have done a tremedous amount of research and have found a doctor at Cedar Sinai in California that is known as the Michael Jordan of neurology and treatment of GBM tumors. We are working on getting set up with him for my brothers treatment. He is home and off all pain meds except Tylenol and doing much better. His kids have put him on a special diet they found in their research. I know he's not loving that but we all should be treating our bodies better. Prayers to everyone and if you have any experience with this Doc., His name is Dr. Keith Black. I would love your input.
    Thanks everyone. :)

    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
  • samual
    samual 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 IV
    HEY BETH,
    M from india,
    so can u plz tell me who da doc. is , and if possible his email add.

    [email protected]