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Glioblastoma Grade IV

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  • sneskas
    sneskas 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

    Please help me save life to a child

    Please help me to save life to a child who diagnosed glioblastoma multiforme (grade 4)!!!!

    Hello, my name is Snezana and I`m from Serbia. I found you on csn.cancer.org and I desperately need your help. You said something about the doctor from Kosovo, and Kosovo is near my town, Kosovo is still part of my country Serbia. Could you ,please give me his name and address or anything that you have about him. My friends son Lazar is 12 years old boy and doctors diagnosed him glioblastoma multiforme (grade 4) about month ago. Boy is now in hospital and he had few epileptic seizures.


    PLEASE HELP ME FASTES AS YOU CAN TO FIND THIS DOCTOR AND SAVE LAZARS LIFE!

    This is my email address: [email protected]

    advance grateful Snezana !
  • adysin
    adysin Member Posts: 1
    GBM
    The summer of 2008, I noticed a "spasm" that went down my right arm to my right leg. I reported it to my neurologist, who ignored it and focused on my other complaints. Tests revealed changes in my spine that were no surprise. I reminded him of the spasm down my right extremities, and he then said he'd order and MRI/MRA (why didn't he listen the first time?). MRI in November 2008 revealed a calcification in my brain (I'm told the neurologist was shocked when he saw that rock).
    I was referred to the head of neurosurgery who wanted to monitor the calcification for around 3 months. That did not feel right to me, so I asked my neurologist for a 2nd opinion. The second surgeon, upon reviewing my scans, got me in his office the same day and told me it had to come out soon, not in 3 months. I went with that opinion.
    February 26, 2009, a 9-hour surgery removed the golf-ball-sized calcification, only to reveal a tumor beneath it. I never thought I would be thankful to have a rock in my head! Otherwise, that tumor would still be there doing no telling what!
    I was in the hospital 3 weeks, during which I had 5 radiation treatments. When discharged, I was started on Temodar 21 days on and 7 days off, and Thalomid 28 days. I also took Zofran to prevent nausea.
    It is now October 2010 and I am still on the Temodar and Thalomid. The Temodar has been reduced from 140 mg to 100 mg because of lowered neutrophils and Thalomid is now 21 days on and 7 days off, like the Temodar.
    The crazy thing is that pathologist from 3 cancer centers do not agree on what type of tumor I have. One says GBM, another says melanoma, and the 3rd says a derivative of GBM. Whatever it is, it appears the treatment is keeping the cancer beast at bay.
    My NO is holding another heavy-duty radiation in the wings should the tumor resurrect itself. I have follow-up MRIs every other month. My major side effect from the oral chemo is neuropathy in my extremities and trouble with balance.
    That's a bit of my story.
  • Tiziana
    Tiziana Member Posts: 2
    Brother with GBM IV
    I was wondering if you could help me please. My brother was diagnosed with GBM IV last August 2009, had operation and 98% was removed. He has been on a strict organic diet, heaps of vegies and supplements etc. The tumour has come back near the previous one. He is due to have his second surgery in a couple of weeks. Please let me know what doctor your father saw.

    Thanks
  • Tiziana
    Tiziana Member Posts: 2
    Brother with GBM IV
    I was wondering if you could help me please. My brother was diagnosed with GBM IV last August 2009, had operation and 98% was removed. He has been on a strict organic diet, heaps of vegies and supplements etc. The tumour has come back near the previous one. He is due to have his second surgery in a couple of weeks. Please let me know what doctor your father saw.

    Thanks
  • teachinart
    teachinart Member Posts: 7
    DO NOT WAIT!!
    my mom was diagnosed 9/22 with TWO grade 4 glio's ... within 11 days were were at Duke University Medical Center. Do not wait for your local oncologist/nurologist to give you info. Be in charge. Get on the net, find the best possible university-hospital Glioblastoma "meca" and go there!!!!..MD Anderson, National Health Institute, Duke, Boston Mass... whatever.. Just get there. Without the knowledge and experience that is at theses mecas of medicine, you will be kill a horse with a toothpic.

    my mom is on her way to Duke this evening for her first "checkup" since beginning her RX. Her tumors are non-sergical and was the 40th person invited to participate in a 41 person study using Avastin, CPT-11, and Tuemador ( don't think I spelled it right) before radiation. This study is going on in 12 other institutions nation wide. Check out Dukes website,and be informed, and be assertive. Your sister deserves it!!!
  • LBYM
    LBYM Member Posts: 1
    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

    How is your mother in law doing
    Hi Greg,

    How is your mother in law doing? I ask because my niece just recently had a recurrence of GBM and is also a patient at UCSF. I am not sure if this vaccine is going to be an option but I would appreciate some insight as to how your mom is doing as a result of this vaccine.

    Thanks,
    LBYM
  • Joe_N_Cyn528
    Joe_N_Cyn528 Member Posts: 1

    DO NOT WAIT!!
    my mom was diagnosed 9/22 with TWO grade 4 glio's ... within 11 days were were at Duke University Medical Center. Do not wait for your local oncologist/nurologist to give you info. Be in charge. Get on the net, find the best possible university-hospital Glioblastoma "meca" and go there!!!!..MD Anderson, National Health Institute, Duke, Boston Mass... whatever.. Just get there. Without the knowledge and experience that is at theses mecas of medicine, you will be kill a horse with a toothpic.

    my mom is on her way to Duke this evening for her first "checkup" since beginning her RX. Her tumors are non-sergical and was the 40th person invited to participate in a 41 person study using Avastin, CPT-11, and Tuemador ( don't think I spelled it right) before radiation. This study is going on in 12 other institutions nation wide. Check out Dukes website,and be informed, and be assertive. Your sister deserves it!!!

    Duke
    We went to Duke in October and enrolled in a clinical trial as well. My husband is 35 and has a Glioblastoma IV. He is doing the Avastin radiation and Temodar. You are right don't sit around and wait for a local doc to help I had to very aggressive to get where we are today.
  • Tiger729
    Tiger729 Member Posts: 4

    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.

    My husband was diagnosed 11/5/2010

    We have been married for 40 years. My husband has had so many surgeries over the last ten years, we joke about him being the 10 Million Dollar Man. With every surgery up until this one, we have been told that he will be at least as good as when he had the surgery and the progression of the problem was stopped This one is different. They tell us that he has a GBM the size of a small orange over his right ear. They must do surgery and give no guarantees except that he will live through the surgery. He did and now we are praying for every second of life that he can live. The Surgeon said 6 to 24 months. How can this be? We have two beautiful daughters and two beautiful grandchildren.
    We are to see a Dr. Karen Fink associated with the Baylor Cancer Program in Dallas, TX on December 6th. We do not know what to expect next.
    He is doing great, has lots of energy and is a changed man. He says God has given him a chance and time to make things right in his life. He says he sees the seconds of his life flying by so fast that he can't move fast enough to keep up. He has reached out to his daughters in a way that I have prayed for. They now talk like friends, he is no longer critical of decisions that they make. They were a force to be reckoned with when he was in the ER. I am so proud of them. He has also reached out to family members that he has not talked to in years.
    I am sorry for running on like this but I am nearly out of my mind. Reading your post sounds so much like what the road we are about to go down.
    Please share some of what you faced. Thank you.
  • NextSteps
    NextSteps Member Posts: 3
    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!

    A mirror of me
    Majw, your email inspired me for my journey is similar. Early November I had the brain tumour removed... 110% and am now in radiation and taking chemo etc.
    I am feeling like the healthy vibrant positive me most of the day... still adjusting to the pre-christmas challenge!(glioblastoma stage IV)
    Trust your friend is well for I wish to mirror her a MRI with NO CANCER!

    Cheers
    Ms NextSteps
  • NextSteps
    NextSteps Member Posts: 3
    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.

    You talk my language
    georgegnm your email inspired me.
    What news.... do share more.
    For you inspire me tooooo.

    I was operated on in november 2010, "110% removal" was the surgeon's success... the MRI in February I believe will be the key vision or view....

    I am inspired by you for while they say 12-15 months.... oh actually 5 years, I see that I am the girl who is a key creator of my destiny.

    2010 close onto 2011.... happy new year to you

    Ms. NextSteps
  • NextSteps
    NextSteps Member Posts: 3
    csharger said:

    GBM: Keep Fighting
    My gbm was discovered January 3, 2008. So I've now had it 15+ months. I'll not repeat the details here, but they are available on CSN. Just look up csharger. I saw my Medical Oncologist last week, and I'm still in remission. The story you'll see on CSN will tell you that my treatment has been pretty conventional...and up 'til now, it's working just fine.

    One thing I will say about Temodar: it really gave me nasty constipation, but you can learn to live through that (the prescription info sheet will tell you about constipation). As mentioned by others, I too was given anti-nausea medication with Temodar. I was never made sick from Temodar using that medication.

    Last, but not least, introduce your Sister to the American Cancer Society and to CSN. ACS has a wealth of information on the disease and its treatment and you're already taking advantage of the interaction between patients that is so well handled by CSN.

    welcome more news you inspsired my subscription
    Dear csharger
    Your email triggered my subscrption and you talk my talk. Being a former TV journo with GRADE 4 removed last month, I am certainly interested in your shared challenge.
    It has been a long time between your posts - are you about?
    Regards
    Ms Next Steps
  • niksit
    niksit Member Posts: 2
    please and details of doctor
    please and details of doctor treating tumors in kosovo.
    i'll be thankful to you.....
  • niksit
    niksit Member Posts: 2
    please send details of
    please send details of doctor treating tumors in kosovo.
    i'll be thankful to you.....
  • ericsnest
    ericsnest 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 stage IV
    Hi Beth, my mom is 69 years old and has been battling GBM for the past 10 months. She had surgical removal of the tumor, chemo,
    radiation and now intravenous radiation therapy. The doctors have indicated that there is nothing more that they can do.

    I wanted to get the information about the doctor from kosovo in order to help my mother improve her condition.

    Thanks,
    Eric
  • gojko25bm
    gojko25bm Member Posts: 1
    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.

    gbm4
    tell me everything you can!
  • ritakron
    ritakron Member Posts: 2
    Rustycat said:

    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.

    Kosovo
    Hi - do you have the information on the Dr. in Kosovo?
    My mother was diagnosed with Stage 4 glioblastoma - please help!
  • ritakron
    ritakron Member Posts: 2
    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.

    Macrobiotic, vegan diet
    PLEASE tell me what you did! My mother was diagnosed.
  • medill2
    medill2 Member Posts: 1
    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.

    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.
  • Atish
    Atish 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
    Beth

    My father also has GBM as of Jan 14th 2011. This have been really hard and is going to go on the same treatment. Im only 24 and it has really been hard on me and my family. We have his results going all over the to see if there is a better treatment out there. If you can email me back at my personal email that would be great. [email protected] Thanks

    Atish
  • Amanda G
    Amanda G Member Posts: 2
    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.