Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Glioblastoma Grade IV

1235

Comments

  • jhbeamer
    jhbeamer Member Posts: 3
    GMurphy said:

    GBM Doing well with alternatives
    Hi!
    My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

    The thing is she's doing REALLY well!! And the doctors are positively tickled.

    I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

    To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

    I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

    survivorship
    Hello and thank you for your message. My father, John, is fighting GBM grade 4, had surgery, radiation, chemo, and we are seeking to be as proactive as possible. Please send us info on the reiki and hynotherapy resources you have found to be helpful, and any other suggestions.

    Best wishes for a beautiful holiday.

    Jennifer and John
  • I_Promise
    I_Promise Member Posts: 218

    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

    Twallen65
    I like your post; I, like so many here, needed to read your post.

    My favorite line is: I rather die from treatment than from the disease.

    And to try everything at once.

    You reinforced what I have been thinking. That to treat brain cancer you have to be as aggressive as possible to prevent a recurrence. Doctors are timid in their approach. They are afraid of making things worse. I can't blame them because I wonder if I am doing the right thing. It would be a lot easier if I were the one with brain cancer but it is my sister (AA3 dx 07/11). What if I push for something that would make her worse? And telling me it is her decision is just a way for caregivers not feel responsible for the decision; or the guilt if something goes wrong. I know more about medicine than she does; I am nor exhausted by 2 brain surgery, 6 weeks of radiation and cycles chemotherapy. Logic dictates that I am better equipped in making such a decision regarding brain cancer treatment. And therefore I have this unbearable responsability that keeps me up at night. I have never failed my sister and I will assume the responsability of her treatment. She said :" Do everything like it would be for yourself". So this my guideline.

    Why do some people survive and some do not? Some say it is the power of prayer (my parents), some say it is the multiple treatments (myself). My sister believes 100% she will die in her bed of old age at 102 with a flute of champagne. I believe it too.

    J.
  • Mcoccclw
    Mcoccclw 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

    Help for my brother
    Hello, my brother has been having treatment on his grade IV giloblastoma brain tumour but so far the doctors here in England haven't been able to halt or shrink it with the radio and chemo :( in fact its grown again since his op. I've just read your message on the cancer survivors network and it gave me a small glimmer of hope, could you please give me any and all info on what you think in your opinion is the best way to tackle this horrible illness. Thanks and Hope to hear from u soon, Michael
  • TAMMY S
    TAMMY S Member Posts: 16
    Burnedout said:

    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.

    I have been having some
    I have been having some mental issues since my last resection about a month ago. My surgeon believes alot of it has to do with damage done from radiation done after my 1st surgery. My last surgery i had was to remove the radiation nercosis that was there. They ended up finding more tumor cells in that mass of crap. I was pretty much told the way i am now could be the "new me". Well that is not the answer I was looking for! I have a 12 and 10 yr old!!!and I am 44!! I know it has to be so exhausting for you as it is for my hubby. But stay positive and keep him moving!!!! Try to make him feel as normal as possible.
  • alutiiqmom
    alutiiqmom Member Posts: 256
    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.

    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
  • CLDavis
    CLDavis Member Posts: 2
    I_Promise said:

    Twallen65
    I like your post; I, like so many here, needed to read your post.

    My favorite line is: I rather die from treatment than from the disease.

    And to try everything at once.

    You reinforced what I have been thinking. That to treat brain cancer you have to be as aggressive as possible to prevent a recurrence. Doctors are timid in their approach. They are afraid of making things worse. I can't blame them because I wonder if I am doing the right thing. It would be a lot easier if I were the one with brain cancer but it is my sister (AA3 dx 07/11). What if I push for something that would make her worse? And telling me it is her decision is just a way for caregivers not feel responsible for the decision; or the guilt if something goes wrong. I know more about medicine than she does; I am nor exhausted by 2 brain surgery, 6 weeks of radiation and cycles chemotherapy. Logic dictates that I am better equipped in making such a decision regarding brain cancer treatment. And therefore I have this unbearable responsability that keeps me up at night. I have never failed my sister and I will assume the responsability of her treatment. She said :" Do everything like it would be for yourself". So this my guideline.

    Why do some people survive and some do not? Some say it is the power of prayer (my parents), some say it is the multiple treatments (myself). My sister believes 100% she will die in her bed of old age at 102 with a flute of champagne. I believe it too.

    J.

    Beginning our Journey
    The is the first of our Family Journey~

    On Friday, February 3, 2012, my Mother-in-law, the STRONGEST Woman I known and have EVER had the honor to love, was diagnosed with Glioblasoma. The Neurosurgeon removed one of two tumors on Friday, they had to stop the surgery due to malfunction with equipment in the Operating Room and resume the next morning, where he then removed the second tumor, the size of a golf ball, which the first tumor was attached to. The Neuro was able to remove 99% of the tumor. Within the past 6 days, she has bee discharged from the hospital, is home recovering from her surgery and we are awaiting a call from Duke University in order to begin Clinical Trials.

    My Mother-in-law has overcome more obstacles in her life than anyone I know, she gave birth to my Husband at 19, divorced by 21, raised my husband on her own for most of his life. She remarried in her mid-late 20's, gave birth to my Sister-in-law who has Downs Syndrome, divorced in her late 30's, lost her job, went back to college, graduated at 43, started a new career, and now is Remarried to the love of her life. They have just begun their journey together, only being married for 6 years (7 in June). They were destined to meet, they both had gone on a blind date and meet each other at the restaurant while waiting on their dates to show-up...who knows if their "dates" arrived or not, it was love at first site for these two love birds!

    I know in my heart of hearts, that my Mother-in-law (Mom as I like to call her, my own Mother suffered a major and life altering brain injury I was 20), will defy all the odds and live MANY years to come. She has far to much to look forward to for defeat - a Loving husband, Daughter, Son, Daughter-in-law, 2 Granddaughters (7 & 5) and a new Grandson (6 months) to look forward to spending many more years with!
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    CLDavis said:

    Beginning our Journey
    The is the first of our Family Journey~

    On Friday, February 3, 2012, my Mother-in-law, the STRONGEST Woman I known and have EVER had the honor to love, was diagnosed with Glioblasoma. The Neurosurgeon removed one of two tumors on Friday, they had to stop the surgery due to malfunction with equipment in the Operating Room and resume the next morning, where he then removed the second tumor, the size of a golf ball, which the first tumor was attached to. The Neuro was able to remove 99% of the tumor. Within the past 6 days, she has bee discharged from the hospital, is home recovering from her surgery and we are awaiting a call from Duke University in order to begin Clinical Trials.

    My Mother-in-law has overcome more obstacles in her life than anyone I know, she gave birth to my Husband at 19, divorced by 21, raised my husband on her own for most of his life. She remarried in her mid-late 20's, gave birth to my Sister-in-law who has Downs Syndrome, divorced in her late 30's, lost her job, went back to college, graduated at 43, started a new career, and now is Remarried to the love of her life. They have just begun their journey together, only being married for 6 years (7 in June). They were destined to meet, they both had gone on a blind date and meet each other at the restaurant while waiting on their dates to show-up...who knows if their "dates" arrived or not, it was love at first site for these two love birds!

    I know in my heart of hearts, that my Mother-in-law (Mom as I like to call her, my own Mother suffered a major and life altering brain injury I was 20), will defy all the odds and live MANY years to come. She has far to much to look forward to for defeat - a Loving husband, Daughter, Son, Daughter-in-law, 2 Granddaughters (7 & 5) and a new Grandson (6 months) to look forward to spending many more years with!

    Welcome to CSN
    Hi, CLDavis.

    I'm so sorry to read about your mother in law's diagnosis. It's a terrible shock and a life changing diagnosis, but you will find help and strength here at CSN. You will find wonderful, compassionate people here who totally understand what you and your family are going through, and people who will give you support and share valuable information with you.

    You wrote a lovely, beautiful tribute to your mother in law. What a wonderful thing to have that kind of love and respect for her! I have found that in our battle with brain cancer, having loving, supportive people around us has been a huge encouragement and help. A fighting, positive attitude is critical in this battle, and I can tell that you will help your mother in law keep that attitude, even though at times it will be really difficult.

    I had a physical therapist tell me something about my son's recovery that I think really applies to the roller coaster of life when you are fighting cancer. She said that your days will be like the weather....some days will be sunny and bright, and some days will be gloomy, dark and cloudy. But just because one day is rainy does not mean that tomorrow won't be sunny again. That has been so true for us. So when things look bad, I remember that tomorrow could be totally different, and all bright and sunny again.

    Love and blessings to you and your family,
    Cindy in Portland/Salem OR
  • connsteele
    connsteele Member Posts: 232
    CLDavis said:

    Beginning our Journey
    The is the first of our Family Journey~

    On Friday, February 3, 2012, my Mother-in-law, the STRONGEST Woman I known and have EVER had the honor to love, was diagnosed with Glioblasoma. The Neurosurgeon removed one of two tumors on Friday, they had to stop the surgery due to malfunction with equipment in the Operating Room and resume the next morning, where he then removed the second tumor, the size of a golf ball, which the first tumor was attached to. The Neuro was able to remove 99% of the tumor. Within the past 6 days, she has bee discharged from the hospital, is home recovering from her surgery and we are awaiting a call from Duke University in order to begin Clinical Trials.

    My Mother-in-law has overcome more obstacles in her life than anyone I know, she gave birth to my Husband at 19, divorced by 21, raised my husband on her own for most of his life. She remarried in her mid-late 20's, gave birth to my Sister-in-law who has Downs Syndrome, divorced in her late 30's, lost her job, went back to college, graduated at 43, started a new career, and now is Remarried to the love of her life. They have just begun their journey together, only being married for 6 years (7 in June). They were destined to meet, they both had gone on a blind date and meet each other at the restaurant while waiting on their dates to show-up...who knows if their "dates" arrived or not, it was love at first site for these two love birds!

    I know in my heart of hearts, that my Mother-in-law (Mom as I like to call her, my own Mother suffered a major and life altering brain injury I was 20), will defy all the odds and live MANY years to come. She has far to much to look forward to for defeat - a Loving husband, Daughter, Son, Daughter-in-law, 2 Granddaughters (7 & 5) and a new Grandson (6 months) to look forward to spending many more years with!

    That is a lovely tribute to
    That is a lovely tribute to your mother-in-law. I'm sure, with her strong character, and the support of a loving family such as you, that she will come through fine. Please keep in touch with how things are going,
    Connie
    m/o David, age 34, dx AA3 on 4-13-12
  • meaganandshane
    meaganandshane Member Posts: 10

    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.

    GBM Stage 4
    Gday from Australia,

    My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

    You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

    Here is the link -
  • entela
    entela Member Posts: 2

    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]

    hope
    HI Beth,i need your help too,tell me the name of this medicine from Kosovo,my husband was diagnozet with GBM stage 4,he is 45 years old,please help me ,my e-mail is [email protected],im from Albania.Thank you!
  • entela
    entela Member Posts: 2

    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]

    hope
    HI Beth,i need your help too,tell me the name of this medicine from Kosovo,my husband was diagnozet with GBM stage 4,he is 45 years old,please help me ,my e-mail is [email protected],im from Albania.Thank you!
  • Jamesysmom
    Jamesysmom Member Posts: 2
    GMurphy said:

    GBM Doing well with alternatives
    Hi!
    My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

    The thing is she's doing REALLY well!! And the doctors are positively tickled.

    I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

    To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

    I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

    hope is so scary
    My son is almost 14 and was diagnosed in Nov. with a stage 4 glioblastoma. He had been having headaches, getting sick off & on for about 3 weeks and was "forgetful." I took him to the dr. on oct 28th where he was proscribed prozac for depression & phenergan for vomitting. We set up an MRI or Cat scan (I honestly cannot remember) & upper GI for Nov. 2nd at our local hospital. On Nov. 1st something, or someone kept telling me to leave work early & take him to the ER at UVA med center. I did & that night I was told he had a brain tumor! I can tell you that was not anywhere in my mind as to what was wrong! He had to have an emergancy drain to relieve the preasure in his brain right there in the ER! The Dr. said if I had waited for the next days apointment he would not have survived the night!
    Dr. John Jane Jr. did a resection on Nov 2nd & removed about 30% of tumor, it was deep on his thalmus & is pressing on his brain stem. On Nov. 3rd he woke up & was able to nod yes & no to questions. On Nov. 4th Dr. John Jane Sr. performed another resection & removed another 30-40% of the tumor & adding a 2nd drain. He woke but was unresponsive. On Nov. 5th a resident saw signs the preasure was dangerously high again & they added a 3rd drain.
    Over the next 2 weeks he was in the PICU at UVA and was awake but "non-responsive" although he reacted to my pressence and his "storming" calmed if either I or his older sister touched him. He was moved to KCRC (Kluge Childrens Rehab Center). The Dr.s & nurses at UVA were not optomistic, they didn't expect him to wake up and talk to us. We were given 3 months without treatment 12-18 with treatment, but treatment was not an option if he was non responsive. At KCRC they weened him off Methadone & Valium and he woke up on his own! They worked with him in SP, PT & Ot...in mid Dec. he started to eat & drink real food & right before XMas he spoke to me for the 1st time in almost 2 months! Today my son walked out of MD Anderson in Orlando where he received his 30th of 33 radiation treatments! And tonight is #41 of 42 temodar doses, he talks, albeit in a strong whisper, walks on his own & is the same crazy kool kid I took to the ER. I don't know what will happen next, but I know he is a fighter. We are exploring other treatments, prayer helps too! But his attitude is amazing, he is my hero. I am terrified of the next MRI, like all the ones before I wait on the edge of a razor for the results. Thankfully it has not grown yet & we hope this treatment will work. He will have 10 months of 5/28 temodar starting in April. His vission & motor skills were affected on his left side due to the 2nd surgery, but he is doing things every week that he couldn't do the week before, he started whistling last week! He was left handed and misses drawing, that is his goal in OT, but his writing it very legible even writing with his right hand. I thank the Dr.s at UVA for saving his life, The MIRACLE workers at Kluge for giving him back to us! And Arnold Palmer & MD Anderson in Orlando for helping us fight this terrible war! The only thing I could ask for is I think I need help or someone to talk to so that I can be my strongest for him. He is surrounded by family and support, which is why we moved here to FL from VA in Jan., but I feel very alone and don't know where to turn. He is SO strong and I don't want to let him down in any way, does anyone know of any support groups, I don't have any insurance for myself as I never went back to work after he was admitted to the hospital, we have all (my 3 children & myself) moved in with my ex-husband & his wife so that He can have all the love & support he deserves through this fight, He is my youngest & I think all of us could use some outlets. Any suggestions?
  • alutiiqmom
    alutiiqmom Member Posts: 256
    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.

    How are you doing today ?
    Hi:

    Just checking in to see how you are doing ? I hope you are living life to the fullest .

    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    NCAA XC said:

    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!

    Checking in
    Hi:

    Just checking in to see how your wife is doing. We just back from MD Anderson. My daughter was originally diagnosed with AA3 but MD thinks it is a Glioblastoma . Can you tell me your wife's journey. God bless you and your wife.

    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    GMurphy said:

    GBM Doing well with alternatives
    Hi!
    My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

    The thing is she's doing REALLY well!! And the doctors are positively tickled.

    I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

    To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

    I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

    Checking in
    Hi

    How is your daughter doing ? My dsughter has the same chemo plan and it is keeping her stable as well. She was first told she had AA3 but another facility thought it was GBM4. She does not have it in her spine though. Our daughter is 18. I am sorry to hear about your daughter. How did she do when you took a break from chemo ? I send you God's blessings .

    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    GMurphy said:

    GBM Doing well with alternatives
    Hi!
    My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

    The thing is she's doing REALLY well!! And the doctors are positively tickled.

    I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

    To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

    I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

    Checking in
    Hi

    How is your daughter doing ? My dsughter has the same chemo plan and it is keeping her stable as well. She was first told she had AA3 but another facility thought it was GBM4. She does not have it in her spine though. Our daughter is 18. I am sorry to hear about your daughter. How did she do when you took a break from chemo ? I send you God's blessings .

    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    GMurphy said:

    GBM Doing well with alternatives
    Hi!
    My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

    The thing is she's doing REALLY well!! And the doctors are positively tickled.

    I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

    To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

    I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

    How is your daughter
    Hi:
    I was trying to respond to GMurphy but it was not working. I hope you get this. How is your daughter? I pray she is well. My daughter is 18 yrs old with same diagnosis and the same regime. Her MRI's are stable, but I am very worried about future and what will happen when chemo stops. Please let know how you are doing. God Bless you and yours.

    Edna
  • anrish
    anrish Member Posts: 2
    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.

    53 years old mother - Glioblastoma stage 4
    Hi there, I would like to know what treatment you had for yourself to survive for 13 years. Please get in touch with me, I really would like to hear from you.
    Thanks
  • anrish
    anrish 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.

    gbm
    Hi there, i know this is a late response but could you please advice me what your diet involved. My mother has a grade 4 gliblastoma.
  • phillip1950
    phillip1950 Member Posts: 4
    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.

    glioblastoma level 4
    Hello, My name is Phil and I'm from Michigan. In June 2012, my son-in-law was diagnosed with a glioblastoma level 4 brain tumor. The doctor said that he removed it totally. There were some very small microscopic particles so small that they didn't know what they were but with his age being 37 and in good health, they will give him aggressive radiation and a chemo regiment. Today, Sept 13, 2006, he is going in for his first mri since he has completed his 6 weeks of radiation. I'm hoping for some good news today. I hear so many stories that this monster regrows itself back. Can you please give me more info about this? Thank You, Phil
    ..................Update, Today is Sept 14th. Recieved a call from the doctor's. The treatment of radiation and the case study did not work. There is now another tumor next to the one that they had removed. The surgeon stated that this one cannot be removed because it is deep and will effect his speech so now they are going to give him a one time radiation along with stronger doses on temedor, and afterwords they are going to go with avastin?. We are all worried sick. To me this is only guess work and hoping for the best. They said that with the last treatment, temedor was given to him in a lower doses and they believe that it works given in Higher doses. If that's the case, then why didn't they start him off on that instead of this case study. Sorry, but I am so nervous and frustrated right now that I really cannot think anymore. Can anyone help me PLease.....Phil
  • IamLaLi
    IamLaLi Member Posts: 1

    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

    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"


    [email protected]

    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
    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
    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
    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
    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
    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
    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

    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
    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
    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: [email protected]