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GBM Cancer Stage 4

barbn
barbn Member Posts: 33
Submitted by barbn on January 30, 2012 - 4:56am

January 28, 2012 - 7:40am

My husband was diagnosed with GBM STAGE 4 on Nov.1st, 2011. he was told 12-14 months prognosis.
He had surgery on Nov. 7th. The surgeon went an inch into his brain and removed 90-100% of tumor.
The tumor had affected his left side. They call it "left neglect". He has trouble seeing things to his left. His left hand had trouble grasping and really weak. He was having trouble picking up the left leg.

HE STARTED SPEECH, PT AND OT immediately after surgery.

We waited about 3 weeks to start Chemo and radiation. (the incison had to heal). The chemo was pill form Temodar.
He had 6 weeks radiation and 42 days chemo (combined)
He was very fortunate, and we are thankful, he had few side effects, being tired and a little redness on forehead.
He finished both around Jan 8th, 2012.

My husband age 61, is in pretty good shape. He works hard to improve. He exercises every day as much as he can,even if it is a few minutes. He has gained most of his motion with his left as far as grasping, etc. He only uses a cane occasionally, his left neglect is much better, has trouble still seeing things on left but can read much better and he focuses on looking to the left to re-train his brain.
Overall at this time he is amazing. We hope in more time he will improve more.

At this point it is Jan 26th, 2012 and we go to the Oncologist on Feb 10th, for an MRI. Our hope is the tumor shrunk or stays the same.
We don't know what our next step will be..
If any one has anything they can contribute, what helped them etc, it would be most appreciated.
Any advise would be appreciated.

We are staying optimistic...We feel that is a major part fighting this battle.... You have to believe... The mind is amazing what it can do..
It is a hard journey but we are going to beat it.

Has any one done anything with alternative medicine????????

I appreciate the chat and if you would like to email us please do [email protected]

we area also on www.caringbridge/visit/jessenowak.com
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Comments

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    Hi, Barbn
    Hello, Barbn.

    Welcome to CSN! I'm very sorry to hear that your husband is battling GBM and that you have a reason to be visiting this site; however, it's a great place to find support, understanding, and encouragement. I check this site every day, several times a day. I also visited your caring bridges blogspot and I looked at the pictures of you and your husband and your beautiful daughter. I could see the love and the togetherness in your pictures, especially the hospital picture with the three of you in the Green Bay Packers colors. Made me smile! Having a tight, loving, supportive circle of family and friends makes a huge difference and I'm so glad that you have that blessing.

    I don't know very much about GBMs. My 28 year old son is fighting a recurrent anaplastic oligdendroglioma. But I wanted to share two websites that I liked and thought might encourage you too.

    Here's one: http://www.virtualtrials.com/survive.cfm There are some pretty impressive stories on this site! I visit this occasionally when I need an extra boost of encouragement.

    Here's another couple and their site that I really love:
    http://livingwithbraincancer.com/default.aspx

    This man and his wife are really good about keeping their site updated so you don't have to wonder what is going on and if Ted is still okay. They are very proactive about treatments and they post new information and links to other websites. They have a positive, encouraging, hopeful outlook that I really love.

    I don't know any real technical things to tell you, but I'd like to share something that I found out while on this road with my son. We have been in this battle since his original diagnosis in May of 2009. I've learned that it is a real roller coaster of a ride. One day things can look really, really bad, and then the next day, there can be some amazing improvements. We had a physical therapist tell us that David's recovery would be like the weather here in Oregon. One day it can be sunny and warm and bright, and then the next day it can be cloudy and gloomy and oppressive. But just because one day is rainy doesn't mean that the next day won't be sunny again. She was talking about physical therapy but it really applies to the whole cancer situation. I have had days when things have looked so bad, and then the very next day, we've gotten incredibly good news. There's been times when I have been terrified by David's situation, and the next day he is so much improved that I have trouble believing it. I try to take it one day at a time, but when things are really hard, I remind myself that tomorrow could very likely be much better. We are in a rough spot right now, so I guess I need to read this post to myself too! :)

    I will be thinking about you and your husband and praying for you guys. Please keep us updated here on CSN. Hoping and expecting good news on February 10th!

    Love and blessings,
    Cindy in Salem, OR
  • DellaMarie
    DellaMarie Member Posts: 9
    Alternative Medicine
    Your husband's positive/optimistic frame of mind is a characteristic of longterm survivors. My husband, who was diagnosed with a GBM stage 4 in January of 2011, had the "Gold Standard" for treating GBM as did your husband. My husband's current treatment plan combines alternative and traditional drugs/medications. I was lucky enough to come across Ben Williams' book, Surviving Terminal Cancer. He is a 16 year survivor of GBM stage 4. You can find his story on www.virtualtrials.com along with a November 2011 update of new alternative treatments since his book came out in 2007. His approach to eradicating the cancer made the most sense to me which is what he calls a "cancer cocktail" meaning many different agents used together at the same time, some of which can/may act synergistically to attack the cancer cells. This is the way AIDS is treated today, not with just one drug but combinations of drugs which have a better chance of eliminating/controlling the disease. We also consulted with Ralph Moss, who researches and investigates the latest and newest cancer treatment that are worthy of considering and you can find him at www.cancerdecisions.com My husband also traveled to a clinic in Germany that was visited by Dr. Moss and reviewed by him in his Moss Report on Brain Cancer. At the clinic, my husband's blood was drawn so that a vaccine could be made using his own white blood cells, it's called a Dendritic Cell Vaccine. The vaccine is injected monthly to help his immune system recognize the tumor cells as invaders and go after them. Dr. Nesselhut is the name of the doctor running the clinic called the Institute for Tumor therapy. All the alternative treatments involve little or no risk, and they don't bring with them the same toxicities and side effect profiles that the standard of care treatments often come with. I will email more detailed info to your personal email address after I view you on www.caringbridge.com I would like to help you any way I can and hope that you can benefit from what I have learned over the past year. I like to have not only Plan A but a Plan B and even a Plan C as GBM is notorious for returning and being resistant to treatment. You aren't alone in this fight, many of us are here to help you and your husband win his battle, the two of you are in my thoughts-
    All my best,
    DellaMarie
  • barbn
    barbn Member Posts: 33

    Alternative Medicine
    Your husband's positive/optimistic frame of mind is a characteristic of longterm survivors. My husband, who was diagnosed with a GBM stage 4 in January of 2011, had the "Gold Standard" for treating GBM as did your husband. My husband's current treatment plan combines alternative and traditional drugs/medications. I was lucky enough to come across Ben Williams' book, Surviving Terminal Cancer. He is a 16 year survivor of GBM stage 4. You can find his story on www.virtualtrials.com along with a November 2011 update of new alternative treatments since his book came out in 2007. His approach to eradicating the cancer made the most sense to me which is what he calls a "cancer cocktail" meaning many different agents used together at the same time, some of which can/may act synergistically to attack the cancer cells. This is the way AIDS is treated today, not with just one drug but combinations of drugs which have a better chance of eliminating/controlling the disease. We also consulted with Ralph Moss, who researches and investigates the latest and newest cancer treatment that are worthy of considering and you can find him at www.cancerdecisions.com My husband also traveled to a clinic in Germany that was visited by Dr. Moss and reviewed by him in his Moss Report on Brain Cancer. At the clinic, my husband's blood was drawn so that a vaccine could be made using his own white blood cells, it's called a Dendritic Cell Vaccine. The vaccine is injected monthly to help his immune system recognize the tumor cells as invaders and go after them. Dr. Nesselhut is the name of the doctor running the clinic called the Institute for Tumor therapy. All the alternative treatments involve little or no risk, and they don't bring with them the same toxicities and side effect profiles that the standard of care treatments often come with. I will email more detailed info to your personal email address after I view you on www.caringbridge.com I would like to help you any way I can and hope that you can benefit from what I have learned over the past year. I like to have not only Plan A but a Plan B and even a Plan C as GBM is notorious for returning and being resistant to treatment. You aren't alone in this fight, many of us are here to help you and your husband win his battle, the two of you are in my thoughts-
    All my best,
    DellaMarie

    Alternative medicine
    Dellamarie
    I would appreciate any info you would provide to us. I'm not sure we would be able to travel to Germany though, but maybe the good lord will find a way for us if that is what were decide.
    thank you so much
    it is so good to talk with other people going to through the same thing.
  • DellaMarie
    DellaMarie Member Posts: 9
    barbn said:

    Alternative medicine
    Dellamarie
    I would appreciate any info you would provide to us. I'm not sure we would be able to travel to Germany though, but maybe the good lord will find a way for us if that is what were decide.
    thank you so much
    it is so good to talk with other people going to through the same thing.

    Alternative Medicine Resources
    Hi Barbn,
    I'm sorry not to have replied sooner but I'm sure you know how crazy things can get and there seems to be no time for anything. I will reply to your personal email address with the info you requested. I hope I can provide you with some helpful info and please don't be concerned if you can't travel to Germany as there is much you can do here and the Dendritic Cell vaccine that is made in Germany is only one part of a multi-pronged treatment approach. Please let me know if you don't receive my email containing invaluable resources, I have been thinking about you and your husband ever since I read your posting-
    DellaMarie
  • DellaMarie
    DellaMarie Member Posts: 9
    barbn said:

    Alternative medicine
    Dellamarie
    I would appreciate any info you would provide to us. I'm not sure we would be able to travel to Germany though, but maybe the good lord will find a way for us if that is what were decide.
    thank you so much
    it is so good to talk with other people going to through the same thing.

    Alternative Medicine Resources
    Hi Barbn,
    I'm sorry not to have replied sooner but I'm sure you know how crazy things can get and there seems to be no time for anything. I will reply to your personal email address with the info you requested. I hope I can provide you with some helpful info and please don't be concerned if you can't travel to Germany as there is much you can do here and the Dendritic Cell vaccine that is made in Germany is only one part of a multi-pronged treatment approach. Please let me know if you don't receive my email containing invaluable resources, I have been thinking about you and your husband ever since I read your posting-
    DellaMarie
  • alutiiqmom
    alutiiqmom Member Posts: 256

    Alternative Medicine
    Your husband's positive/optimistic frame of mind is a characteristic of longterm survivors. My husband, who was diagnosed with a GBM stage 4 in January of 2011, had the "Gold Standard" for treating GBM as did your husband. My husband's current treatment plan combines alternative and traditional drugs/medications. I was lucky enough to come across Ben Williams' book, Surviving Terminal Cancer. He is a 16 year survivor of GBM stage 4. You can find his story on www.virtualtrials.com along with a November 2011 update of new alternative treatments since his book came out in 2007. His approach to eradicating the cancer made the most sense to me which is what he calls a "cancer cocktail" meaning many different agents used together at the same time, some of which can/may act synergistically to attack the cancer cells. This is the way AIDS is treated today, not with just one drug but combinations of drugs which have a better chance of eliminating/controlling the disease. We also consulted with Ralph Moss, who researches and investigates the latest and newest cancer treatment that are worthy of considering and you can find him at www.cancerdecisions.com My husband also traveled to a clinic in Germany that was visited by Dr. Moss and reviewed by him in his Moss Report on Brain Cancer. At the clinic, my husband's blood was drawn so that a vaccine could be made using his own white blood cells, it's called a Dendritic Cell Vaccine. The vaccine is injected monthly to help his immune system recognize the tumor cells as invaders and go after them. Dr. Nesselhut is the name of the doctor running the clinic called the Institute for Tumor therapy. All the alternative treatments involve little or no risk, and they don't bring with them the same toxicities and side effect profiles that the standard of care treatments often come with. I will email more detailed info to your personal email address after I view you on www.caringbridge.com I would like to help you any way I can and hope that you can benefit from what I have learned over the past year. I like to have not only Plan A but a Plan B and even a Plan C as GBM is notorious for returning and being resistant to treatment. You aren't alone in this fight, many of us are here to help you and your husband win his battle, the two of you are in my thoughts-
    All my best,
    DellaMarie

    interested in your treatment info
    Hi:

    My 18 year old daughter has anaplastic astrocytoma. We are doing the standard treatment: surgery, radiation and now chemo. This is a nasty illness. I am very curious about the cocktail you mention as well as all of the other stuff. Sounds promising. Could you please email me at: [email protected] and let me know any useful information. Thank you very much. God Bless.

    Edna
  • barbn
    barbn Member Posts: 33

    interested in your treatment info
    Hi:

    My 18 year old daughter has anaplastic astrocytoma. We are doing the standard treatment: surgery, radiation and now chemo. This is a nasty illness. I am very curious about the cocktail you mention as well as all of the other stuff. Sounds promising. Could you please email me at: [email protected] and let me know any useful information. Thank you very much. God Bless.

    Edna

    Cocktail
    Hi Edna
    So sorry to hear about your daughter. Yes it is a nasty fight, but you have to remain optimistic, that is part of the battle.
    As for the "cocktail that was a post from DellaMarie. Not sure what that all pertains to.
    DellaMarie can you help her out???
    If there is anything I can help you with, please let me know.
    My husband will go in Friday to see what the MRI shows. He did his round of radiation and chemo. WE are anxious and scared, but very optimistic. He is doing quite well, just tired.
    Barb
  • barbn
    barbn Member Posts: 33

    interested in your treatment info
    Hi:

    My 18 year old daughter has anaplastic astrocytoma. We are doing the standard treatment: surgery, radiation and now chemo. This is a nasty illness. I am very curious about the cocktail you mention as well as all of the other stuff. Sounds promising. Could you please email me at: [email protected] and let me know any useful information. Thank you very much. God Bless.

    Edna

    coctail
    DellaMarie
    I would also like info on the COCTAIL. please e-amil me at [email protected]l.com
    I somehow lost your e-mail.
  • DellaMarie
    DellaMarie Member Posts: 9
    barbn said:

    coctail
    DellaMarie
    I would also like info on the COCTAIL. please e-amil me at [email protected]
    I somehow lost your e-mail.

    COCKTAIL
    Hi Barbn.
    I will email info to your gmail address-
    DellaMarie
  • DellaMarie
    DellaMarie Member Posts: 9

    interested in your treatment info
    Hi:

    My 18 year old daughter has anaplastic astrocytoma. We are doing the standard treatment: surgery, radiation and now chemo. This is a nasty illness. I am very curious about the cocktail you mention as well as all of the other stuff. Sounds promising. Could you please email me at: [email protected] and let me know any useful information. Thank you very much. God Bless.

    Edna

    COCKTAIL
    Hi Edna,
    I will email you the requested info-
    DellaMarie
  • I_Promise
    I_Promise Member Posts: 218

    COCKTAIL
    Hi Edna,
    I will email you the requested info-
    DellaMarie

    hi
    Dear Della Marie,

    Why not post your info for everyone to see? I am sure that a lot of people come on this site to learn more about option.

    J.
  • barbn
    barbn Member Posts: 33
    I_Promise said:

    hi
    Dear Della Marie,

    Why not post your info for everyone to see? I am sure that a lot of people come on this site to learn more about option.

    J.

    My husband had his MRI today, unfortunately we didn't get the news we were hoping to hear. The tumor isn't showing where he had surgery, but they see two small spots in different places. How depressing. We were so optimistic. I asked the Dr. if the MRI could be deceiving yet, cause he said he could be slightly fuzzy to see everything. He felt the spots were SOMETHNG and didn't feel he should keep him on Temodor any longer to try something more aggressive than hoping it is nothing. So he will be starting Avastin on Tuesday.
    I feel so deflated. I don't know where to go from here. We could go for trials but we are not ready for that.
    Jess will be getting Avastin once every 2 weeks. Another MRI in 8 weeks.
    We want and will stay optimistic and with prayers and the grace of God this drug might help.
    Has anyone out there had avastin? We need to hear advice on this drug??/
  • mighty6
    mighty6 Member Posts: 47
    barbn said:

    My husband had his MRI today, unfortunately we didn't get the news we were hoping to hear. The tumor isn't showing where he had surgery, but they see two small spots in different places. How depressing. We were so optimistic. I asked the Dr. if the MRI could be deceiving yet, cause he said he could be slightly fuzzy to see everything. He felt the spots were SOMETHNG and didn't feel he should keep him on Temodor any longer to try something more aggressive than hoping it is nothing. So he will be starting Avastin on Tuesday.
    I feel so deflated. I don't know where to go from here. We could go for trials but we are not ready for that.
    Jess will be getting Avastin once every 2 weeks. Another MRI in 8 weeks.
    We want and will stay optimistic and with prayers and the grace of God this drug might help.
    Has anyone out there had avastin? We need to hear advice on this drug??/

    promising trials
    barbn,

    I'm so sorry to hear the bad news. But don't feel discouraged yet.My husband is going for an MRI next week too. So I also got a list of the plan B,C,... if things don't turn out to be right. To name a few:
    . CDX-110 trial phase2 with recurrent GBM, this also allow you to continue with Avastin if needed
    . Toca-511 trial phase 1 with recurrent glioma. i know it is just Phase 1, but they are positive reports recently, on mice testing, Simens funding...

    Both can be found at
    www.clinicaltrials.gov

    I've known a few people using Avastin and are ok with it. Hemorrhage and clots are something you want to watch for.


    All the best to your family and all on this sites!

    Jane
  • connsteele
    connsteele Member Posts: 232
    barbn said:

    My husband had his MRI today, unfortunately we didn't get the news we were hoping to hear. The tumor isn't showing where he had surgery, but they see two small spots in different places. How depressing. We were so optimistic. I asked the Dr. if the MRI could be deceiving yet, cause he said he could be slightly fuzzy to see everything. He felt the spots were SOMETHNG and didn't feel he should keep him on Temodor any longer to try something more aggressive than hoping it is nothing. So he will be starting Avastin on Tuesday.
    I feel so deflated. I don't know where to go from here. We could go for trials but we are not ready for that.
    Jess will be getting Avastin once every 2 weeks. Another MRI in 8 weeks.
    We want and will stay optimistic and with prayers and the grace of God this drug might help.
    Has anyone out there had avastin? We need to hear advice on this drug??/

    Sorry to hear that the MRI
    Sorry to hear that the MRI results were not what you had hoped. Hang in there and keep us informed. Hope and prayers that the Avastin will do the job.
    BTW: where is your husband being treated?
    Connie
    m/o David, age 34, medullo dx 6/85; AA3 dx 4/11
  • barbn
    barbn Member Posts: 33

    Sorry to hear that the MRI
    Sorry to hear that the MRI results were not what you had hoped. Hang in there and keep us informed. Hope and prayers that the Avastin will do the job.
    BTW: where is your husband being treated?
    Connie
    m/o David, age 34, medullo dx 6/85; AA3 dx 4/11

    LOST
    WE are being treated at this time in Marshfield, Wisconsin. We are thinking of going to Mayo in Rochester Minnesota to see what they can tell us.
    I am lost, don't know what to do. We start Avastin Tuesday, so while he is starting this , I presume I can get another opinion at Mayo, but I'm sure they won't do anything if we are this chemo. If I understand right, once you start a drug until it is proven that it is not working for you you are not eligible for trials. Is that correct???
    I'm not sure what all these abbrev. mean. I am new to this. I know dx means diagnosed what is AA3 DX 4/11
  • barbn
    barbn Member Posts: 33
    mighty6 said:

    promising trials
    barbn,

    I'm so sorry to hear the bad news. But don't feel discouraged yet.My husband is going for an MRI next week too. So I also got a list of the plan B,C,... if things don't turn out to be right. To name a few:
    . CDX-110 trial phase2 with recurrent GBM, this also allow you to continue with Avastin if needed
    . Toca-511 trial phase 1 with recurrent glioma. i know it is just Phase 1, but they are positive reports recently, on mice testing, Simens funding...

    Both can be found at
    www.clinicaltrials.gov

    I've known a few people using Avastin and are ok with it. Hemorrhage and clots are something you want to watch for.


    All the best to your family and all on this sites!

    Jane

    TRIALS
    Thanks for info on trials. When was husband diagnosed. Was it stage 4 GBM
    Good luck with the results of MRI next week.
    Where are you from?
  • connsteele
    connsteele Member Posts: 232
    barbn said:

    LOST
    WE are being treated at this time in Marshfield, Wisconsin. We are thinking of going to Mayo in Rochester Minnesota to see what they can tell us.
    I am lost, don't know what to do. We start Avastin Tuesday, so while he is starting this , I presume I can get another opinion at Mayo, but I'm sure they won't do anything if we are this chemo. If I understand right, once you start a drug until it is proven that it is not working for you you are not eligible for trials. Is that correct???
    I'm not sure what all these abbrev. mean. I am new to this. I know dx means diagnosed what is AA3 DX 4/11

    Sorry for the cryptic
    Sorry for the cryptic abbreviations. I know how overwhelmed you feel with all of this. After two cancer diagnoses for my son and prostate cancer for my husband (who is doing well, he was diagnosed in 2003 and in remission), I still get overwhelmed with all the information and terms.

    As for clinical trials, I don't know what it takes to get into one. For some reason, our son's doc hasn't mentioned any for him (he goes to the James Cancer Center at Ohio State University). I know there are certain criteria that a patient has to meet in order to be enrolled. I'm wondering if because our son is diabetic, and has had two different types of brain cancer, that it disqualifies him from most.

    I don't think it would hurt to contact Mayo and talk to someone about your siutation...that his starting Avastin would prevent him from any clinical trials.

    Our son's Neuro-oncologist said he is keeping Avastin "in his back pocket" for when his current chemo regimen (CCNU and procarbazine) stops working. He is due for an MRI on Feb. 20, so I guess we'll know then. He's completed just one 6-week cycle of this CCNU/procarbazine, after being on Temodar for 5 months, which didn't work: a new tumor showed up on the scan.

    This is certainly a rough road we are all on. I'm glad there are people on this list who I can talk to, who know what I'm going through. Please keep in touch and let us all know what you plan on doing.

    Love and prayers,
    Connie
    mother of David, age 34
    first brain cancer: medulloblastoma, dx April 1985,
    second brain cancer: anaplastic astrocytoma (AA3), dx April 2011
  • I_Promise
    I_Promise Member Posts: 218

    Sorry for the cryptic
    Sorry for the cryptic abbreviations. I know how overwhelmed you feel with all of this. After two cancer diagnoses for my son and prostate cancer for my husband (who is doing well, he was diagnosed in 2003 and in remission), I still get overwhelmed with all the information and terms.

    As for clinical trials, I don't know what it takes to get into one. For some reason, our son's doc hasn't mentioned any for him (he goes to the James Cancer Center at Ohio State University). I know there are certain criteria that a patient has to meet in order to be enrolled. I'm wondering if because our son is diabetic, and has had two different types of brain cancer, that it disqualifies him from most.

    I don't think it would hurt to contact Mayo and talk to someone about your siutation...that his starting Avastin would prevent him from any clinical trials.

    Our son's Neuro-oncologist said he is keeping Avastin "in his back pocket" for when his current chemo regimen (CCNU and procarbazine) stops working. He is due for an MRI on Feb. 20, so I guess we'll know then. He's completed just one 6-week cycle of this CCNU/procarbazine, after being on Temodar for 5 months, which didn't work: a new tumor showed up on the scan.

    This is certainly a rough road we are all on. I'm glad there are people on this list who I can talk to, who know what I'm going through. Please keep in touch and let us all know what you plan on doing.

    Love and prayers,
    Connie
    mother of David, age 34
    first brain cancer: medulloblastoma, dx April 1985,
    second brain cancer: anaplastic astrocytoma (AA3), dx April 2011

    vaccine trial
    Dear Barbn,

    Listen to Jane: go on the vaccine trial she told you about in her previous post. No surgery is required.

    I dont know if Mayo offers the EGFRvIII vaccine (it has many names); all institutions are not equal; there is no consensus between even the big names Mayo, MD anderson, Hopkins etc...


    Clinicaltrial.gov is a good place to see about the upcoming trials and where they are given. Your Neuro-Onc will not always know them all.

    all the best,

    J.
  • mighty6
    mighty6 Member Posts: 47
    barbn said:

    TRIALS
    Thanks for info on trials. When was husband diagnosed. Was it stage 4 GBM
    Good luck with the results of MRI next week.
    Where are you from?

    trials
    hi barbn,


    Here is the link for the EFGFRviii (CDX-110) trial:
    http://www.clinicaltrials.gov/ct2/show/NCT01498328?term=cdx-110&rank=2

    Toca511- with surgery: (surgery sounds bad, but you might get the virus/vaccine right to the tumor cavity, so this might be more powerful)
    http://www.clinicaltrials.gov/ct2/show/NCT01470794?term=toca-511&rank=1

    Toca511 - without surgery:
    http://www.clinicaltrials.gov/ct2/show/NCT01156584?term=toca-511&rank=2

    All three trials have open sites national-wide. hope you can try to find one closet to you. Your ON might not be aware of those if he/she does not participate in trial programs. In that case, you have to talk to the trial site and get trial related care from Drs. there. Your own ON needs to work with them to carry out your standard care procedure. Yes, there are many requirements/restrictions. but I am willing to move a mountain to find a cure (Julia said it before), I know you are too.

    If you ever decide to go with one of those, please act fast, all the procedures take time, (in weeks, months), contact them for initial appointment, , get the gene testing done. As brain cancer patient, we have to borrow time!


    My husband was dx with GBM4 in July , 2011. We are treated at Baylor, Dallas TX. He is doing great at the moment. Thanks for your thoughts.

    --Jane
  • barbn
    barbn Member Posts: 33
    I_Promise said:

    vaccine trial
    Dear Barbn,

    Listen to Jane: go on the vaccine trial she told you about in her previous post. No surgery is required.

    I dont know if Mayo offers the EGFRvIII vaccine (it has many names); all institutions are not equal; there is no consensus between even the big names Mayo, MD anderson, Hopkins etc...


    Clinicaltrial.gov is a good place to see about the upcoming trials and where they are given. Your Neuro-Onc will not always know them all.

    all the best,

    J.

    wish it was that easy
    I wish it was that easy to get on the vaccine trial. To get on a trial you have to have proof the last drug isn't working for you then you hope you fall into the category to get the vaccine trial and it is not filled.
    Unless you know something I would sure appreciate it.
    Thanks for info though, i will definately check into it.
  • kulaken
    kulaken Member Posts: 14
    GBM stage 4
    Barbn:

    I also was diagnosed with Gbm stage 4 back on Aug 4th 2011; 3 cm at that time ,It grew to 4 cm in 28 days ,, i chose against resection for the tumor is on my right visual horn affecting my eyesight , the neurosurgeon said id loose more sight if he was to remove it , so put me on Dexamethasone ,, and did 5 weeks of full brain radiation , my last treatment was oct 5th , here it is 4 months later ,, and the good news is it has shrunk in half ,, here is what they plan on doing in my case ,, now that it has shrunk , i will be going through another radiation procedure called ,, Gamma Knife ,, im scheduled for next week , as the Dr.s say that chemo doesn't get to that part of the brain to be effective i didn't have to go through that ,, i have lost most of my left field in both eyes , the seizures have stopped , regained my some of my strength back , I am a 49 yr old male in good shape ,, hope this helped , and good luck !!!!
  • barbn
    barbn Member Posts: 33
    kulaken said:

    GBM stage 4
    Barbn:

    I also was diagnosed with Gbm stage 4 back on Aug 4th 2011; 3 cm at that time ,It grew to 4 cm in 28 days ,, i chose against resection for the tumor is on my right visual horn affecting my eyesight , the neurosurgeon said id loose more sight if he was to remove it , so put me on Dexamethasone ,, and did 5 weeks of full brain radiation , my last treatment was oct 5th , here it is 4 months later ,, and the good news is it has shrunk in half ,, here is what they plan on doing in my case ,, now that it has shrunk , i will be going through another radiation procedure called ,, Gamma Knife ,, im scheduled for next week , as the Dr.s say that chemo doesn't get to that part of the brain to be effective i didn't have to go through that ,, i have lost most of my left field in both eyes , the seizures have stopped , regained my some of my strength back , I am a 49 yr old male in good shape ,, hope this helped , and good luck !!!!

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.
  • mighty6
    mighty6 Member Posts: 47
    barbn said:

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.

    best wishes!
    barbn,

    i can imagine how nervous you must be at the moment. Mayo is a good place to be, but 5 hours away from home is a big challenge too.
    especially lots of the trial requires patients to be on-site frequently! So many tough decision , I wish you the best of luck!

    please keep us posted.

    Jane
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    barbn said:

    Mayo clinic
    Well we have made a decision to get another opinion before starting Avastin. I got a hold of Mayo clinic in Rochester,MN.
    They recommended seeing them before starting a treatment that might take a way from clinical trials farther down the road.
    So here we are 5 hours from home waiting anxiously for our appointment Monday morning.
    We pray we get better news. Will keep posted.

    clinical trial
    Hi, Barb.

    I'm glad that you are able to get a second opinion. I think that if you didn't, you might later wonder, "what if....?" And the Mayo Clinic sure has a great reputation. I hope that they have some ideas that will help Jesse.

    We tried a clinical trial back in August/Sept/October at NIH (National Institutes of Health) in Betheseda, Maryland. I thought it was going to be a nightmare to have to travel for all of David's treatments, but it wasn't that bad, once we developed a routine and knew what we were doing. We flew there every two weeks...sometimes every week. We are on the West Coast, so we spent an entire day traveling to get there, and another day going home. It was not easy, but it was a lot better than I had thought it was going to be. I had major reservations about having David's care managed long-distance, but these big places are so well organized, and NIH especially bent over backwards to help us in any way they could. They paid for everything....hotel, airfare, taxis when we needed them, even gave us a food allowance. I have nothing but great things to say about NIH. Unfortunately, though, the clinical didn't help David at all. He tried a chemo called Sutent....he had more than 25% tumor growth in one month, and he had to drop out of that clinical.

    Now we are back at OHSU, participating in the Blood Brain Barrier Disruption clinical, and there are people from all over the country staying at OHSU while they get the BBBD treatment. OHSU is set up really well for families...they have a couch bed in each room for a caretaker (spouse, mom, girlfriend/boyfriend) to stay with the patient, they have a separate family sleeping room, a shower, laundry, microwave and freezer for family members to use. And they are really flexible and let me order food off the hospital menu too. So I basically eat for free the whole time I stay with David. It's a big help. I would think that the Mayo Clinic had a similar set-up...at least, I hope so.

    Anyway, I hope that the logistics aren't too much for you if you do decide to go with the Mayo Clinic. I'm thinking about you and Jesse and your daughter and hoping and praying for a good treatment option for Jesse. Please let us know how it goes at the Mayo Clinic for you and Jesse.

    Love and blessings,
    Cindy in Salem OR
    Mom of 28 year old David, dx 5/09 AOIII
  • jbilinski
    jbilinski Member Posts: 1
    mighty6 said:

    trials
    hi barbn,


    Here is the link for the EFGFRviii (CDX-110) trial:
    http://www.clinicaltrials.gov/ct2/show/NCT01498328?term=cdx-110&rank=2

    Toca511- with surgery: (surgery sounds bad, but you might get the virus/vaccine right to the tumor cavity, so this might be more powerful)
    http://www.clinicaltrials.gov/ct2/show/NCT01470794?term=toca-511&rank=1

    Toca511 - without surgery:
    http://www.clinicaltrials.gov/ct2/show/NCT01156584?term=toca-511&rank=2

    All three trials have open sites national-wide. hope you can try to find one closet to you. Your ON might not be aware of those if he/she does not participate in trial programs. In that case, you have to talk to the trial site and get trial related care from Drs. there. Your own ON needs to work with them to carry out your standard care procedure. Yes, there are many requirements/restrictions. but I am willing to move a mountain to find a cure (Julia said it before), I know you are too.

    If you ever decide to go with one of those, please act fast, all the procedures take time, (in weeks, months), contact them for initial appointment, , get the gene testing done. As brain cancer patient, we have to borrow time!


    My husband was dx with GBM4 in July , 2011. We are treated at Baylor, Dallas TX. He is doing great at the moment. Thanks for your thoughts.

    --Jane

    vaccine
    My son Nate (22) was diagnosed with GBM IV on November 17, 2011. He is on his second round of radiation this week along with tremodar before bed.

    Nate is participating in the brain cancer vaccine at the University of Michigan. We picked Michigan because of the location (only 3 hours from home) He had his second surgery January 5th to remove tumor that will be used to make the vaccine. 44 locations are offering this trial (now in phase 2)The original article regarding this was sent to us by several friends. I will send the link to the article below.

    This has been beyond my worst nightmare, and my son is much stronger and braver than I am. I am looking forward to the time I just become numb over it. I am still in the crying stage 3 months later.

    Good luck to you all. It's nice to speak with people that can actually relate to what we are dealing with. friends just can't right now.

    Jolene
    http://www.miamiherald.com/2011/11/22/2514428/new-brain-vaccine-aims-to-turn.html
  • barbn
    barbn Member Posts: 33

    clinical trial
    Hi, Barb.

    I'm glad that you are able to get a second opinion. I think that if you didn't, you might later wonder, "what if....?" And the Mayo Clinic sure has a great reputation. I hope that they have some ideas that will help Jesse.

    We tried a clinical trial back in August/Sept/October at NIH (National Institutes of Health) in Betheseda, Maryland. I thought it was going to be a nightmare to have to travel for all of David's treatments, but it wasn't that bad, once we developed a routine and knew what we were doing. We flew there every two weeks...sometimes every week. We are on the West Coast, so we spent an entire day traveling to get there, and another day going home. It was not easy, but it was a lot better than I had thought it was going to be. I had major reservations about having David's care managed long-distance, but these big places are so well organized, and NIH especially bent over backwards to help us in any way they could. They paid for everything....hotel, airfare, taxis when we needed them, even gave us a food allowance. I have nothing but great things to say about NIH. Unfortunately, though, the clinical didn't help David at all. He tried a chemo called Sutent....he had more than 25% tumor growth in one month, and he had to drop out of that clinical.

    Now we are back at OHSU, participating in the Blood Brain Barrier Disruption clinical, and there are people from all over the country staying at OHSU while they get the BBBD treatment. OHSU is set up really well for families...they have a couch bed in each room for a caretaker (spouse, mom, girlfriend/boyfriend) to stay with the patient, they have a separate family sleeping room, a shower, laundry, microwave and freezer for family members to use. And they are really flexible and let me order food off the hospital menu too. So I basically eat for free the whole time I stay with David. It's a big help. I would think that the Mayo Clinic had a similar set-up...at least, I hope so.

    Anyway, I hope that the logistics aren't too much for you if you do decide to go with the Mayo Clinic. I'm thinking about you and Jesse and your daughter and hoping and praying for a good treatment option for Jesse. Please let us know how it goes at the Mayo Clinic for you and Jesse.

    Love and blessings,
    Cindy in Salem OR
    Mom of 28 year old David, dx 5/09 AOIII

    Mayo Clinic
    Well we made the trip to MAYO CLINIC. The Clinic is amazing and we felt they were on top of the game. It was a very encouraging day. Jess went for blood tests and we saw a nurse practioner and the oncologist Dr. Buckner. As I wrote previously on Jesse's last MRI the Dr. from our hometown felt he saw two new spots on the MRI which he thought looked like new tumors.
    At Mayo they are thinking the new spots are necrosis(dead cells from the radiation) showing up on the MRI. Dr.Buckner feels the way Jess is doing, and usually the 1st MRI is fuzzy and it is hard to see completely. He also mentioned he didn't think it would grow that fast after having rdiation and chemo.
    Anyway, before he decides for sure he wanted to do an e-conference today with the radiologist from our home town. He feels if they targeted that area it could be necrosis. No-one can be 100% sure. If it was targeted with radiation Dr. Buckner will probably keep him on Temodar 5 days a week once a month. (Which is good, cause Jess didn't have side effects). Then we would go back to MAyo Clinic in a month for another MRI. If it was not radiated in that area then will go to a clinical trial of Avastin and a combination of another drug. The only thing is the other drug could be the real thing or a placebo, but we would still be on Avastin which was the original plan.
    So we are waiting for the results from the e-conference to see which way to proceed.
    We are keeping our fingers crossed and hope the good lord hears our prayers.
    Mayo Clinic is also requesting a tissue from the tumor. They want to do a MGMT test. I don't understand completely but will try to explain the best I can. Apparently some people have a genetic tendency to react better to certain treatments. if he tests positive to the genetic link, the prognosis is better because the chemo will work better on him. We hope for good results on this test as well
    We feel really good about getting the second opinion. These people are specialists in there field and feel they are definately on top of the game with brain tumors and gave us more information to be optimistic about.
    So we will say our prayers and hope we get good results tomorrow.
    barb
  • meaganandshane
    meaganandshane Member Posts: 10
    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 -
  • sadinholland
    sadinholland Member Posts: 248

    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 -

    meaganandshane
    What a beautiful song and wonderful video. Very touching. You have a beautiful family. I will be praying for Shane and your entire family.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248

    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 -

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...
  • barbn
    barbn Member Posts: 33

    your song
    Your song is beautiful...I listened to it today on the one year annv. of the day I hear the doctor tell my sister those horrible words you have a brain tumor...

    Your song is beautiful and your family is too. Wish is all the best. Keep being optimistic.
    WE received good news from mayo clinic. the radation has shown the spots on the MRI are necrosis (dead cells from the radiation) not tumors. YEA! Feels so good to finally hear good news. Nothing is 100% sure, cause the MRI is fuzzy but the Dr. from Mayo feels since the radiation was done around the surrounding area where they thought might be new tumors, it was dead cells. He feels my husband is doing well and it just grew too fast for new ones.
    He will now stay on Temodaor 5days on 23 days off and go back for an MRI in a month and hope it stays the same or gets better.
    Dr. Buckner informed us he has a patients, one specifically with GBM IV on his 20th year, some 8-10, some
    3-4 and also the bad news of only couple months.
    We found him very encouraging, and very optimistic. He explained there are so many new researches going on. JUST KEEP THE FAITH>
    DON"T GIVE UP.