Glioblastoma Grade IV
My sister was recently diagnosed with Glioblastoma and we are wanting to know as much as possible on treatment options, effects of , and alternative therapies. We understand it is important to educate ourselves but then to decide what our own journey will look and feel like. We know the power of thoughts and how thoughts manifest. Please help us to shine even more light today.. Comments please
Comments
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Hang in there.......
I can only speak from my best friend's experience with a glioblastoma multiforma, stage IV....She is 51.......she was diagnosed late October 2008......Had 4 1/2 hours of surgery first week in November.....her's was centrally located in the top of her head.......she had the surgery on a Wednesday and was home on Saturday, amazing! Very small amount of pain as the brain doesn't have pain receptors.....amazing, again! She, after 4 weeks began radiation, 6 weeks 5 days a week.......each treatment amounted to 15 minutes.....took us 45 minutes to get there! Her scalp looked "sunburned" but otherwise minimal side effects, although the radiation did cause hair loss.....(she looks fabulous in her wig!) She now has been on Termador, oral chemotherapy for the past 6 months and is doing absolutely GREAT! No side effects what so ever from the chemo...... According to her doctors the oral chemo works best for this nasty type of brain cancer. Her attitude has been fantastic! She and I have been best friends for 24 years and I must say, she is my HERO! She has a great support system, her husband, kids and many, many who love her......That is so important. Her first MRI showed NO CANCER..........hopefully they got it all before it had a chance for all it's "little fingers" to invade the rest of her brain. She has her next MRI and CAT scan in July......we are all praying for the same result!
Your sister is in a living nightmare and will need all the love and support all of you can give. BUT please, don't listen to "horror stories".......EVERYONE and EVERY CASE is different! Don't allow NEGATIVITY around her, even if it means cutting toxic people off..........
My friend is now part of my support system as I was diagnosed 2 months ago with breast cancer..two friends with cancer,we support one another and I must say, no one knows, other than one with cancer what one is going through.....I will be fine.......But her love and concern towards me is so uplifting.....I pray that your sister comes through all this, as well as your entire family.......with flying colors.......Best wishes and God bless!1 -
GBM
Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com
My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!
Beth0 -
alternative therapiesbethanyd said:GBM
Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com
My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!
Beth
Beth,
Please send any info on the alternative therapies used for Glioblastoma Grade IV. I am very proactive with my health and know that there is a melding of alternative and alopathic medcines. Again the alternative approach needs to the choice of the patient and their family, It is not my decision... I do want to be informed. I appreciate your assistance and concerns.0 -
hang in ThereMAJW said:Hang in there.......
I can only speak from my best friend's experience with a glioblastoma multiforma, stage IV....She is 51.......she was diagnosed late October 2008......Had 4 1/2 hours of surgery first week in November.....her's was centrally located in the top of her head.......she had the surgery on a Wednesday and was home on Saturday, amazing! Very small amount of pain as the brain doesn't have pain receptors.....amazing, again! She, after 4 weeks began radiation, 6 weeks 5 days a week.......each treatment amounted to 15 minutes.....took us 45 minutes to get there! Her scalp looked "sunburned" but otherwise minimal side effects, although the radiation did cause hair loss.....(she looks fabulous in her wig!) She now has been on Termador, oral chemotherapy for the past 6 months and is doing absolutely GREAT! No side effects what so ever from the chemo...... According to her doctors the oral chemo works best for this nasty type of brain cancer. Her attitude has been fantastic! She and I have been best friends for 24 years and I must say, she is my HERO! She has a great support system, her husband, kids and many, many who love her......That is so important. Her first MRI showed NO CANCER..........hopefully they got it all before it had a chance for all it's "little fingers" to invade the rest of her brain. She has her next MRI and CAT scan in July......we are all praying for the same result!
Your sister is in a living nightmare and will need all the love and support all of you can give. BUT please, don't listen to "horror stories".......EVERYONE and EVERY CASE is different! Don't allow NEGATIVITY around her, even if it means cutting toxic people off..........
My friend is now part of my support system as I was diagnosed 2 months ago with breast cancer..two friends with cancer,we support one another and I must say, no one knows, other than one with cancer what one is going through.....I will be fine.......But her love and concern towards me is so uplifting.....I pray that your sister comes through all this, as well as your entire family.......with flying colors.......Best wishes and God bless!
I so appreciate your supporting words. My sister is so positive and will travel this journey beautifully. I extend full support and prayer to you both. You two are truely an continued inspiration.0 -
alternative complementsbethanyd said:GBM
Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com
My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!
Beth
Beth,
I can be reached at espurl@gmail.com with the info on alternative therapies. Since I am a massage therapist and have been treating my sister with CranioSacral therapy she is open to options. At least she is willing to education from all avenues. I am sure she will be doing the chemo and radiation very soon and possibly additional research at Duke. We want to know all possibilities.
Effie
espurl@gmail.com0 -
my dad just had most of his
my dad just had most of his tumor (glial blastoma grade IV) removed on thursday, and was sent home on sunday. his treatment plan includes surgery, radiation, and chemo. his operation went beautifully and he is feeling great, way better than before..! though he still has headaches. we are awaiting more info to come from his upcoming appointments, but so far, so good! keep your sister's spirits up:) and take things one day at a time.
ps my dad is 49... they said his tumor was probably there 3-6 months and was almost the size of a tennis ball.0 -
Stay strong!
My heart goes out to you! My mom was diagnosed with a Grade IV GBM tumor in April. Unfortunately, by the time they found it, the tumor had already grown quite large (and caused her to have very limited mobility on the left side of her body) and it's location within the brain made removal impossible, but she is currently undergoing radiation and oral chemo (Temodar). Like someone mentioned in a previous post, this particular type of chemo isn't as bad as some others. My mom hasn't had ANY side effects from it, and she receives an anti-nausea pill (Phenergan) 30 minutes before taking it to prevent any possible nausea (if the doctor doesn't recommend it, it might be a good idea to ask about it!) She also takes a steroid to control brain swelling.
I don't have any info on alternative treatments (I am just now beginning to do my own research on that) but I do want to tell you that the most important thing to remember is to stay positive, not matter what any doctor, family member, book, article, etc. says. Keep your sister motivated to fight this, give her support, show her how loved she is (i'm sure that just comes naturally!) Don't ever let her give up or feel like this cancer is too big for her. She can beat it! Like someone else said, don't listen to all the horror stories.. yes, they've happened, but so have many survival stories!
My mom's prognosis isn't the best, her faith is so strong that even with all the "serious talks" the doctors have had with us, we all remain hopeful that things can change for the better!
I wish you, your sister, and your loved ones the best of luck through out all of this! 0 -
There is always hopenatalyg said:Stay strong!
My heart goes out to you! My mom was diagnosed with a Grade IV GBM tumor in April. Unfortunately, by the time they found it, the tumor had already grown quite large (and caused her to have very limited mobility on the left side of her body) and it's location within the brain made removal impossible, but she is currently undergoing radiation and oral chemo (Temodar). Like someone mentioned in a previous post, this particular type of chemo isn't as bad as some others. My mom hasn't had ANY side effects from it, and she receives an anti-nausea pill (Phenergan) 30 minutes before taking it to prevent any possible nausea (if the doctor doesn't recommend it, it might be a good idea to ask about it!) She also takes a steroid to control brain swelling.
I don't have any info on alternative treatments (I am just now beginning to do my own research on that) but I do want to tell you that the most important thing to remember is to stay positive, not matter what any doctor, family member, book, article, etc. says. Keep your sister motivated to fight this, give her support, show her how loved she is (i'm sure that just comes naturally!) Don't ever let her give up or feel like this cancer is too big for her. She can beat it! Like someone else said, don't listen to all the horror stories.. yes, they've happened, but so have many survival stories! My mom's prognosis isn't the best, her faith is so strong that even with all the "serious talks" the doctors have had with us, we all remain hopeful that things can change for the better!
I wish you, your sister, and your loved ones the best of luck through out all of this!
There is nothing more devastating than hearing the word CANCER! I am so sorry that anyone must go through this. This ugly beast called glioblastoma grade 4 has invaded our lives and it came with a vengance. I look at my children and think that they should not have to see their Dad in such a way. He has always been the strong one and the one that we all depended on. Now, he can't drive or do the things that he has loved doing for all of his life. We are doing all that we can to make life as normal as possible, but it is so hard. The treatments, chemo and radiation have gone well so far. He is a little weaker and tires easily, but he still has his wonderful smile and sense of humor.
My hearts goes out to anyone facing this disease.0 -
Giloblastoma alternative treatment Dr. S. Burzynski
If anyone out there is battling this you need to
quickly do a google search on Dr. S. Burzynski houston
Texas Giloblastoma
15-20 years ago the government tried to shut down
Dr. Burzynski for quackery until so many people
testified on his behalf about their successes with
brain cancer that the U.S. government did a 180 and
now is working with him.
Their clinical trials are now in stage III
The treatment works far better than conventional
treatment. I have spoken to people who have
survived going to Houston to see Dr. S. Burzynski
It is rather expensive but his treatment will give
you a chance at long-term survival
best of luck to you0 -
GBM: Keep Fighting
My gbm was discovered January 3, 2008. So I've now had it 15+ months. I'll not repeat the details here, but they are available on CSN. Just look up csharger. I saw my Medical Oncologist last week, and I'm still in remission. The story you'll see on CSN will tell you that my treatment has been pretty conventional...and up 'til now, it's working just fine.
One thing I will say about Temodar: it really gave me nasty constipation, but you can learn to live through that (the prescription info sheet will tell you about constipation). As mentioned by others, I too was given anti-nausea medication with Temodar. I was never made sick from Temodar using that medication.
Last, but not least, introduce your Sister to the American Cancer Society and to CSN. ACS has a wealth of information on the disease and its treatment and you're already taking advantage of the interaction between patients that is so well handled by CSN.0 -
glioblastoma muliformecsharger said:GBM: Keep Fighting
My gbm was discovered January 3, 2008. So I've now had it 15+ months. I'll not repeat the details here, but they are available on CSN. Just look up csharger. I saw my Medical Oncologist last week, and I'm still in remission. The story you'll see on CSN will tell you that my treatment has been pretty conventional...and up 'til now, it's working just fine.
One thing I will say about Temodar: it really gave me nasty constipation, but you can learn to live through that (the prescription info sheet will tell you about constipation). As mentioned by others, I too was given anti-nausea medication with Temodar. I was never made sick from Temodar using that medication.
Last, but not least, introduce your Sister to the American Cancer Society and to CSN. ACS has a wealth of information on the disease and its treatment and you're already taking advantage of the interaction between patients that is so well handled by CSN.
Hi Csharger,
My husband was diagnosed with an astrocytoma on April 23rd. We are now getting ready to do treatment at MD Anderson in Orlando, and they now say he has a gliobastoma multiforme. They started him on chemo right away now, and we are going next week to get the mask going for radiation. Do you have multiforme? And did you have your radiation before starting chemo.
Any info would be appreciated.
Thank You
Shirley0 -
information about treatment
Hi: I am so sorry about that is happening to your family! I recently learned of a brain tumor foundation whose mission is to educate folks about treatments. It's called the Bruce Kaye Brain Tumor Foundation. Check it out......it may be helpful to you. Sending peace and love. Liz0 -
Change from astrocytoma to GBM.shirley_l said:glioblastoma muliforme
Hi Csharger,
My husband was diagnosed with an astrocytoma on April 23rd. We are now getting ready to do treatment at MD Anderson in Orlando, and they now say he has a gliobastoma multiforme. They started him on chemo right away now, and we are going next week to get the mask going for radiation. Do you have multiforme? And did you have your radiation before starting chemo.
Any info would be appreciated.
Thank You
Shirley
To shirley_l
Please tell us what occurred that changed the diagnosis from Astrocytoma (Grade 3?) to GBM? (Grade 4)?
thank you. My husband had radiation (33 treatments) and chemo (42 days) of Temodar at the same time. He has 8 treatments left.0 -
change from astrocytoma to GBMkempenl said:Change from astrocytoma to GBM.
To shirley_l
Please tell us what occurred that changed the diagnosis from Astrocytoma (Grade 3?) to GBM? (Grade 4)?
thank you. My husband had radiation (33 treatments) and chemo (42 days) of Temodar at the same time. He has 8 treatments left.
The biopsy that was done said it was an astrocytoma grade 2. There was some infiltration to the other side of the brain, but my thoughts were that we were going to be OK with this for a while. But when the did the seriotactic MRI, it showed a much different story. Much more involvement than first thought, and showed the blood sources being created by the tumor. He is going to have to have full brain radiation, which is really scaring me. He has already started on chemo. Temodar and Xeloda. They also prescribed celebrex. He takes the Xeloda and Celebrex together 2X a day, and takes the Temodar at night. We are going to MD Anderson in Orlando tomorrow for his mask, and will find out hopefully when radiation will start and the duration, although I do not expect it will be the 6 weeks as first was thought.0 -
glioblastoma multiformeshirley_l said:glioblastoma muliforme
Hi Csharger,
My husband was diagnosed with an astrocytoma on April 23rd. We are now getting ready to do treatment at MD Anderson in Orlando, and they now say he has a gliobastoma multiforme. They started him on chemo right away now, and we are going next week to get the mask going for radiation. Do you have multiforme? And did you have your radiation before starting chemo.
Any info would be appreciated.
Thank You
Shirley
Shirley...I am so very sorry about your husband's recent diagnosis. My husband was diagnosed on 2/18/09 with a gbm grade 4. His tumor was the size of a golf ball and the surgeon was able to remove about 99%. He received 30 days of radiation, 42 days of temodar and has just completed his additional 3rd round of double temodar ( 300 mg daily). He will have 2 weeks off the temodar and will begin round 4 with the possibility of an increase in the daily dosage. Thankfully the only problems with his treatment have been the loss of his hair from the radiation and some tiredness from the chemo. He will have an MRI on 7/17 to see if the tumor has returned. With gbm the tumor is 99% certain to return in the same area as previously discovered. I don't know how much research you have done on this cancer, but if you do, be prepared for what you learn. This is a most ugly and mean beast that refuses to be restrained. It is extremely resistant to treatment and all that the doctors have told us is that they will treat my husband to give him more time. If you will google "gbm grade 4" you will link to a number of sites for info. Be VERY careful to not fall into some of the discussions that are totally depressing and will be almost more than you can read. I will check this site often and if I can offer any thing to you I will be glad to do so.
I would suggest that you look at Dr. Henry Friedman at Duke Hospital in N. C. He is the premier renowned doctor in treating gbm. This is not a cancer that cannot be cured without the intervention by God. The doctors have not given us any information that will tell us that a cure is out there. We just pray daily and depend on the Lord to give us a miracle.
We have been married almost 40 years and have two sons and a 4 year old grandson. Needless to say, this has just devastated all of us. You must try to be positive and enjoy every single moment that you have together. The battle is tough and the outcome doesn't look hopeful. I am so very sorry that we are all in this battle.
We are still in a state of shock over all of this. My husband was healthy, worked, played golf and walked about 2-2 1/2 miles per day. He had a seizure and that is how our journey began. We will be praying for you and we covet your prayers as well.0 -
gliokempenl said:Change from astrocytoma to GBM.
To shirley_l
Please tell us what occurred that changed the diagnosis from Astrocytoma (Grade 3?) to GBM? (Grade 4)?
thank you. My husband had radiation (33 treatments) and chemo (42 days) of Temodar at the same time. He has 8 treatments left.
Were they able to do surgery on your husband to remove some of the tumor? My husband's tumor is in-operable. I am praying for some miracle, but I know this is really bad. How is your husband doing?
My husband is on Temodar, Celebrex, and Xeloda. When he starts radiation next week the doctor wants to add avastin. He will be doing 30 days of radiation.
The biopsy came back grade 2 astrocytoma, but the doctor showed us the MRI that was done at MD Anderson in Orlando and you can see where it has little streams of cancer on both sides of the thalmas and into the right side of the brain also. He said even though the biopsy came back as grade 2, this is no grade 2 tumor.
Thank you for any info you may have
Shirley0 -
Glioblastomabethanyd said:GBM
Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com
My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!
Beth
Hi Beth,
I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.
We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.
Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.
Dee0 -
DR. FRIEDMANGrantsnana said:glioblastoma multiforme
Shirley...I am so very sorry about your husband's recent diagnosis. My husband was diagnosed on 2/18/09 with a gbm grade 4. His tumor was the size of a golf ball and the surgeon was able to remove about 99%. He received 30 days of radiation, 42 days of temodar and has just completed his additional 3rd round of double temodar ( 300 mg daily). He will have 2 weeks off the temodar and will begin round 4 with the possibility of an increase in the daily dosage. Thankfully the only problems with his treatment have been the loss of his hair from the radiation and some tiredness from the chemo. He will have an MRI on 7/17 to see if the tumor has returned. With gbm the tumor is 99% certain to return in the same area as previously discovered. I don't know how much research you have done on this cancer, but if you do, be prepared for what you learn. This is a most ugly and mean beast that refuses to be restrained. It is extremely resistant to treatment and all that the doctors have told us is that they will treat my husband to give him more time. If you will google "gbm grade 4" you will link to a number of sites for info. Be VERY careful to not fall into some of the discussions that are totally depressing and will be almost more than you can read. I will check this site often and if I can offer any thing to you I will be glad to do so.
I would suggest that you look at Dr. Henry Friedman at Duke Hospital in N. C. He is the premier renowned doctor in treating gbm. This is not a cancer that cannot be cured without the intervention by God. The doctors have not given us any information that will tell us that a cure is out there. We just pray daily and depend on the Lord to give us a miracle.
We have been married almost 40 years and have two sons and a 4 year old grandson. Needless to say, this has just devastated all of us. You must try to be positive and enjoy every single moment that you have together. The battle is tough and the outcome doesn't look hopeful. I am so very sorry that we are all in this battle.
We are still in a state of shock over all of this. My husband was healthy, worked, played golf and walked about 2-2 1/2 miles per day. He had a seizure and that is how our journey began. We will be praying for you and we covet your prayers as well.
I too, in going on this journey with my best friend, understand that Dr. Friedman at Duke is the premier physican in the treatment of GB.........I would certainly try for an appointment with him......my friend has her upcoming MRI on July 20........may I ask for your prayers for her.......she is 51........and please know that I am keeping you all in my prayers..........
God bless each and everyone of you.......0 -
Don't give ever give up.
I know that the diagnosis of GBM can seem like a death sentence after hearing the statistics. But stay strong. Every day that my daughter remains in remission is one more day that we have beaten this disease. We enjoy every precious moment that she is in our lives, and we continue to pray for a lifetime with her. I know of nothing that I can offer you in regards to alternative therapies and low-risk treatment options. But I do want you to know that there is a whole community here supporting you.0
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