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]
    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]i.com 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 Member

    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 Member

    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.