Glioblastoma Multiforme

ErinKolster
ErinKolster Member Posts: 2
edited March 2014 in Brain Cancer #1
My dad was just diagnosed with Glioblastoma Multiforme. Is there anyone out there with a success story or some knowledge on this? Please help!!! My dad needs some hope and some suggestions!!
Thank you,
Erin Kolster

Comments

  • tclong2
    tclong2 Member Posts: 3
    #2
    Errin, I'm sorry your dad. I was diagnosed three months ago. I have gone through two operations, and am in my 14th day of radiology. I have had one treatment of timordor, and at this time have stabilized without any more setbacks. I feel pretty lucky. This disease and tumor is the worst possible scenario. Tell your dad to not lose faith and to smile and laugh everyday. he can e-mail me anytime he wants to, and I will respond.
  • nanc721
    nanc721 Member Posts: 29
    #3
    Erin, Do not be discouraged...my husband was dx'd on Mother's Day of 2003. He had surgery, 8 weeks of radiation concurrent with Temodar daily, and continues on Temodar now..5 days out of every 28. He has tolerated all the therapies very well. Takes Zofran just about one half hour before the Temodar..both are taken orally...and has done very well....he only missed 9 days of work after the surgery, and an hour a day for the radiation treatments. He has had some problems with short term memory loss, and some cognitive processing problems, but overall, has had a remarkable course. So don't lose faith...and don't believe everything you read. Yes, glioblastoma can be devastating..and the statistics stink, but people do survive. People have been given terrible prognoses, and still done well. So NEVER give up hope...I would suggest finding an oncologist that you are comfortable with, and also getting a second opinion from either Duke University in North Carolina, or from MD Anderson in Houston TX. Also Dr. Keith Black is a neurosurgeon at Cedars-Sinai Hospital in Los Angeles who is doing a lot of research into GBM, and he has a terrific reputation. Feel free to email me anytime. My husband also comes in as tatersalad, and would be happy to talk with you.
  • TAremote
    TAremote Member Posts: 56 Member
    #4
    Erin, I have stage 4 GBM, and was dx in July 2003. Since then I have had a resection in Sug 21st where they got 80% of the tumor, followed by 6 wks of radiation along with temadar at the same time. Since then I have had 8 rounds of temadar. My last three MRI's have shown no new growth of the tumor. I also have some vision problems due to the tumor being located on my occipitial lobe (controls vision), short term memory, and cognitive issues. Other than these issues I have been very blessed and get around just fine. I was given 4 months without treatment and 11 months with treatment. But as you can tell, I plan on beating the 11 month date. I don't ask why me, but glad it is me. I have been given a second chance at being a better person, and I try to help others as much as I can. My faith in God has allowed me to stay strong, and focus on the positives. I look at my journey, and not the destination. Sure there will be tough times ahead, but I look for the good days, and there are plenty of those.
    I wish your Dad and you the best. Stay strong, and stay positive.
    If you need anything else let me know.

    God Bless
    Tom
  • yulah
    yulah Member Posts: 1
    #5
    My husband was recently diagnosed with glioblastoma multiforme. I need to hear all the success stories and what treatments you received. I am afraid i am not handling this very well and very scared of what to expect. Please help
  • wrightmsw
    wrightmsw Member Posts: 6
    #6
    my hubby is 46 and diagnoes last august, we,ve been through sugery, radiation, chemotherapy 2 different ones, x-knife and now another surgery to remove a reccurence and insert gliodel chemo wafers,. Want to talk contact me at wrightmsw@aol.com thoughts and prayers are with you.
  • scox
    scox Member Posts: 1
    #7
    wrightmsw said:

    my hubby is 46 and diagnoes last august, we,ve been through sugery, radiation, chemotherapy 2 different ones, x-knife and now another surgery to remove a reccurence and insert gliodel chemo wafers,. Want to talk contact me at wrightmsw@aol.com thoughts and prayers are with you.

    My husband was diagnosed two weeks ago with GBM. Needless to say, our emotions are completely wrecked at this point in time. He had surgery for removal of the tumor on May 7 (with insertion of the Gliadel wafers), and starts radiation on Tuesday for 6 1/2 weeks. He is doing very well at this point. This diagnosis has shaken us to our very foundation, and I wanted to find some testimonials about success against this disease. My thoughts and prayers are with each and every one of you.
  • carol315
    carol315 Member Posts: 1
    #8
    scox said:

    My husband was diagnosed two weeks ago with GBM. Needless to say, our emotions are completely wrecked at this point in time. He had surgery for removal of the tumor on May 7 (with insertion of the Gliadel wafers), and starts radiation on Tuesday for 6 1/2 weeks. He is doing very well at this point. This diagnosis has shaken us to our very foundation, and I wanted to find some testimonials about success against this disease. My thoughts and prayers are with each and every one of you.

    Next month will be 2 years since my husband was diagnosed with grade 4 GBM. He was initially given 6 mos to live. After 2 unsuccessful attempts to remove the tumor, he found a surgeon who was able to remove the bulk of the tumor. He had already received radiation with Temodar at this point. Gliadel wafers were inserted during the 3rd surgery. Remaining tumor was biopsied, along with surrounding tissue, at this time, with no pathology found. The remaining tumor was dead and no live tumor cells were found. He began taking Temodar every 28 days. He also takes Melatonin 30 mg every night at bedtime. I feel strongly about the positive effects of Melatonin and GBM. I suggest you read up on this. He had gamma knife treatment 4 mos after 3rd surgery. The Dr was unsure if there was actual recurrence or if it was scar tissue so we opted to proceed with gamma knife to be on the safe side. My husband is not without problems, but he is alive at 2 years and we continue to be optimistic. He developed side effects from gamma knife which caused brain swelling which in turn caused brain injury causing him to have severe left side weakness/loss. He is receiving PT and OT for this. He does have some cognitive issues such as short-term memory problems. These problems are also improving through therapy. He has MRI every 2 mos-----which have shown no recurrence, only scar tissue and dead tumor.

    I wish you and your husband the best, along with everyone else on this board. Do not give up hope and do not let anyone else tell you to give up hope.

    Sincerely,

    Carol
  • katydid74
    katydid74 Member Posts: 3
    #9
    carol315 said:

    Next month will be 2 years since my husband was diagnosed with grade 4 GBM. He was initially given 6 mos to live. After 2 unsuccessful attempts to remove the tumor, he found a surgeon who was able to remove the bulk of the tumor. He had already received radiation with Temodar at this point. Gliadel wafers were inserted during the 3rd surgery. Remaining tumor was biopsied, along with surrounding tissue, at this time, with no pathology found. The remaining tumor was dead and no live tumor cells were found. He began taking Temodar every 28 days. He also takes Melatonin 30 mg every night at bedtime. I feel strongly about the positive effects of Melatonin and GBM. I suggest you read up on this. He had gamma knife treatment 4 mos after 3rd surgery. The Dr was unsure if there was actual recurrence or if it was scar tissue so we opted to proceed with gamma knife to be on the safe side. My husband is not without problems, but he is alive at 2 years and we continue to be optimistic. He developed side effects from gamma knife which caused brain swelling which in turn caused brain injury causing him to have severe left side weakness/loss. He is receiving PT and OT for this. He does have some cognitive issues such as short-term memory problems. These problems are also improving through therapy. He has MRI every 2 mos-----which have shown no recurrence, only scar tissue and dead tumor.

    I wish you and your husband the best, along with everyone else on this board. Do not give up hope and do not let anyone else tell you to give up hope.

    Sincerely,

    Carol

    My husband was diagnosed with grade 4 GBM on May 3 and a successful surgery on May 5 in which the entire tumor was removed. On June 1, he began 5X week radiation treatments as well as 140 mg Temodar 5X week. This double effect treatment will continue for the next 6 weeks. Recently in the news, Temodar was touted as being perhaps the "standard" for the treatment of brain tumors. I have not heard of the Melatonin you mention, but will look it up tonight. Good luck to everyone who is reading the messages on this website. My prayers and good thoughts are with you. Take care,
    K. Young
  • camfam05
    camfam05 Member Posts: 1
    #10
    carol315 said:

    Next month will be 2 years since my husband was diagnosed with grade 4 GBM. He was initially given 6 mos to live. After 2 unsuccessful attempts to remove the tumor, he found a surgeon who was able to remove the bulk of the tumor. He had already received radiation with Temodar at this point. Gliadel wafers were inserted during the 3rd surgery. Remaining tumor was biopsied, along with surrounding tissue, at this time, with no pathology found. The remaining tumor was dead and no live tumor cells were found. He began taking Temodar every 28 days. He also takes Melatonin 30 mg every night at bedtime. I feel strongly about the positive effects of Melatonin and GBM. I suggest you read up on this. He had gamma knife treatment 4 mos after 3rd surgery. The Dr was unsure if there was actual recurrence or if it was scar tissue so we opted to proceed with gamma knife to be on the safe side. My husband is not without problems, but he is alive at 2 years and we continue to be optimistic. He developed side effects from gamma knife which caused brain swelling which in turn caused brain injury causing him to have severe left side weakness/loss. He is receiving PT and OT for this. He does have some cognitive issues such as short-term memory problems. These problems are also improving through therapy. He has MRI every 2 mos-----which have shown no recurrence, only scar tissue and dead tumor.

    I wish you and your husband the best, along with everyone else on this board. Do not give up hope and do not let anyone else tell you to give up hope.

    Sincerely,

    Carol

    Hi Carol, I hope your husband is doing well. My wife has a GBM and is in the middle of radiation now. She also is doing Temodar and Celebrex. We are trying to decide about adding the Melatonin and perhaps PSK that is mentioned in several places including Dr. Williams book DURING RT. There is that argument about antioxidents during RT at least but no Dr. will say one way of another on the these things. Did you guys use the melatonin during RT? Curious of the dosage? I have seen most people taking 20mg? Which brand are you using?

    Did you Neuro Onc. help? we have gone to UCSF and are headed to DUke after the RT, we live in Seattle.

    Thanks,

    Scott
  • WendiJoLea
    WendiJoLea Member Posts: 1
    #11
    carol315 said:

    Next month will be 2 years since my husband was diagnosed with grade 4 GBM. He was initially given 6 mos to live. After 2 unsuccessful attempts to remove the tumor, he found a surgeon who was able to remove the bulk of the tumor. He had already received radiation with Temodar at this point. Gliadel wafers were inserted during the 3rd surgery. Remaining tumor was biopsied, along with surrounding tissue, at this time, with no pathology found. The remaining tumor was dead and no live tumor cells were found. He began taking Temodar every 28 days. He also takes Melatonin 30 mg every night at bedtime. I feel strongly about the positive effects of Melatonin and GBM. I suggest you read up on this. He had gamma knife treatment 4 mos after 3rd surgery. The Dr was unsure if there was actual recurrence or if it was scar tissue so we opted to proceed with gamma knife to be on the safe side. My husband is not without problems, but he is alive at 2 years and we continue to be optimistic. He developed side effects from gamma knife which caused brain swelling which in turn caused brain injury causing him to have severe left side weakness/loss. He is receiving PT and OT for this. He does have some cognitive issues such as short-term memory problems. These problems are also improving through therapy. He has MRI every 2 mos-----which have shown no recurrence, only scar tissue and dead tumor.

    I wish you and your husband the best, along with everyone else on this board. Do not give up hope and do not let anyone else tell you to give up hope.

    Sincerely,

    Carol

    A dear friend's 41 yo husband was diagnosed with grade 4 GBM in Oct 04--underwent surgery, chemo, & radiation but cancer returned in Apr 05. He's going to Madison, WI next week to be evaluated for a clinical trial--hoping to get IL-13 + surgery instead of surgery alone. What should they do if he gets put in the group that doesn't get IL-13???? (Interleukin-13 does not appear to have bad side effects, so it seems worth trying.)
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator
  • butterfly2811
    butterfly2811 Member Posts: 7
    #13
    WendiJoLea said:

    A dear friend's 41 yo husband was diagnosed with grade 4 GBM in Oct 04--underwent surgery, chemo, & radiation but cancer returned in Apr 05. He's going to Madison, WI next week to be evaluated for a clinical trial--hoping to get IL-13 + surgery instead of surgery alone. What should they do if he gets put in the group that doesn't get IL-13???? (Interleukin-13 does not appear to have bad side effects, so it seems worth trying.)

    Just found this post because
    Just found this post because I have the same question. Wondering how everyone is doing, seeing that these posts are years old. What has been working?
  • janellie
    janellie Member Posts: 18
    #14
    butterfly2811 said:

    Just found this post because
    Just found this post because I have the same question. Wondering how everyone is doing, seeing that these posts are years old. What has been working?

    old posts
    Butterfly,

    Unfortunately I have found on old threads you will rarely see a reply....especially if they are GBM IV threads, most have passed on and few loved ones keep up...
  • Frankie11
    Frankie11 Member Posts: 1
    #15
    butterfly2811 said:

    Just found this post because
    Just found this post because I have the same question. Wondering how everyone is doing, seeing that these posts are years old. What has been working?

    Old Posts
    Butterfly,
    I just joined this website but am a 2 year survivor of stage 4 Glioblastoma Multiforme. In October 2009, I had a lemon sized tumor removed from my frontal lobe. I was fortunate because the surgeon felt like he had removed all the tumor (even tho they can't be sure). I then took 34 radiation treatments in combination with temodar. After the initial treatment I agreed to participate in a clinical trial through MD Anderson. I took 240mg of temodar 7 days a week every other week and 800mg of celebrex every day for one year. My last dose of medication was in December 2010.
  • mighty6
    mighty6 Member Posts: 47
    #16
    Frankie11 said:

    Old Posts
    Butterfly,
    I just joined this website but am a 2 year survivor of stage 4 Glioblastoma Multiforme. In October 2009, I had a lemon sized tumor removed from my frontal lobe. I was fortunate because the surgeon felt like he had removed all the tumor (even tho they can't be sure). I then took 34 radiation treatments in combination with temodar. After the initial treatment I agreed to participate in a clinical trial through MD Anderson. I took 240mg of temodar 7 days a week every other week and 800mg of celebrex every day for one year. My last dose of medication was in December 2010.

    It's great to see another 2 year GBM survivor!
    Frankie11,

    So happy for you. It sounds like you have been off-treatment for almost a year!

    My 46 years-old hubby was dx with GBM 3 months back. Your experience is obviously encouraging. Did that clinical trial do the wonder? Or anything else you like to share? When you are in MD. Anderson, did they ever test your MGMT? How is your overall experience with MD Anderson?

    thanks in advance for our answers!
    Jane
  • ktubby
    ktubby Member Posts: 4
    #17
    Frankie11 said:

    Old Posts
    Butterfly,
    I just joined this website but am a 2 year survivor of stage 4 Glioblastoma Multiforme. In October 2009, I had a lemon sized tumor removed from my frontal lobe. I was fortunate because the surgeon felt like he had removed all the tumor (even tho they can't be sure). I then took 34 radiation treatments in combination with temodar. After the initial treatment I agreed to participate in a clinical trial through MD Anderson. I took 240mg of temodar 7 days a week every other week and 800mg of celebrex every day for one year. My last dose of medication was in December 2010.

    Combo drug
    Hi was wondering how you did on the combo of temodar and celebrex. Now almost a year later. Thanks
  • IJU
    IJU Member Posts: 1
    #18
    Frankie11 said:

    Old Posts
    Butterfly,
    I just joined this website but am a 2 year survivor of stage 4 Glioblastoma Multiforme. In October 2009, I had a lemon sized tumor removed from my frontal lobe. I was fortunate because the surgeon felt like he had removed all the tumor (even tho they can't be sure). I then took 34 radiation treatments in combination with temodar. After the initial treatment I agreed to participate in a clinical trial through MD Anderson. I took 240mg of temodar 7 days a week every other week and 800mg of celebrex every day for one year. My last dose of medication was in December 2010.

    So happy for you!
    Hi Frankie

    so happy for you and for my family . Your success story is a big encouraging factor for people like me, My father who is 76 was detected with stage 4 glioblastoma multiofrme on sept.10,2011 in his frontal lobe, he was operated successfully on Sept 17,2011. Started taking Temodar 140 mg /day f0r 6 weeks and five days/per week for 6 weeks of radiation therapy . He has gone week but we are hopeful he will recover once these treatements are over. Now our concern is the short term memory loss. In your case did you have this issue. If yes, how did you cope with it

    GOD bless you

    iju
  • mlewis33
    mlewis33 Member Posts: 2
    #19
    Glioblastoma
    I was diagnosed with a Glioblastoma Grade II in my right frontal lobe in October 2009. I had surgery on 11/30/2009 to remove the tumor. The biggest problems I've experienced outside of being on medical leave for 8 months, was I could not move my left arm and leg for a few days after surgery. Two weeks in a rehab facility took care of that problem. I was back at work by mid July 2010 full time. I am still taking Temadar daily which makes me fatigued by the end of the day. Otherwise; I have been very fortunate on the outcome so far. There is always the unknown. Will the tumor come back? I have an MRI every two months and still see my surgeon afterwards along with my Oncologist who I see monthly. I'll do this until they tell me stop. The worst thing I did during this was start reading more on brain tumors, that would just depress me the more depth I would go into. I've been able to return to my normal life including golf and traveling. In the mean time I've inherited my Aunts estate in Florence, Italy. I'm preparing to make my third trip there since surgery. I'm really not certain how my problem compares with your dad's Glioblastoma Multiforme, but let him know there are good stories out here and family is important to be around during the toughest time.

    Regards and I will keep a good thought for your dad,
    Mike

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