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Glioblastoma Grade IV

espurl
Posts: 4
Joined: May 2009

5-30-09
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

only1life
Posts: 1
Joined: Nov 2012

good morning Tiffany88 my wife has a brain tumor on the right side of her brain.there is hope. she had it operated on in june of 2011 a second one 3 months later.after 6 months of radiation.her mri.came back very good. now she is on avastin & termador.its not a cure but it seems to be working well. her mris look great.look into avastin & termador.dont give up hope.

pinzou
Posts: 2
Joined: Jan 2010

My daughter has just been diagnosed with GBM 4. She had the tumor removed on December 15,2009. She is soon to start radiation and chemo but I would be very happy if you could email me some information on the Kosovo's Doctor. My thoughts and prayers are your Dad and your family. Email: pinzou@bellsouth.net

Mario

Dante
Posts: 9
Joined: Jan 2010

Hi,
My husband (50 years old) was just diagnosed with a glioblastoma multiform grade 4 on his brain stem. They say it can't be operated on and give us a 4% 1 year survival time. I need help. Any information you could give would be appreciated.

pinzou
Posts: 2
Joined: Jan 2010

Hello,

I was wondering how your father is doing? Do you still have the Doctor contact info in Kosovo. My daughter is currently on Temodar, but she's not doing good.

djbay01
Posts: 1
Joined: Jul 2010

My sister has just been diagnosed with GBM Grade4. She has had surgery to remove most of the larger one so she still has some of that one plus 2 smaller ones that are deeper. I would like for you to send me info on Dr. Kosovo....Please and thank you for your post...personal email is oldbays324@aol.com I will be looking for your email....I hope your still looking on your post. She was diagnosed on Tuesday and had surgery on Thursday She is currently doing 6 weeks of radiation and is on Chemo pill Tremador

jstbeunme
Posts: 5
Joined: Oct 2011

did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is dancino77@hotmail.com thank you so much.

jstbeunme
Posts: 5
Joined: Oct 2011

did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is dancino77@hotmail.com thank you so much.

jstbeunme
Posts: 5
Joined: Oct 2011

did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is dancino77@hotmail.com thank you so much.

jstbeunme
Posts: 5
Joined: Oct 2011

did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is dancino77@hotmail.com thank you so much.

jstbeunme
Posts: 5
Joined: Oct 2011

did you ever get the info on the doc in kosovo? please send me the info if you have. my e-mail is dancino77@hotmail.com thank you so much.

beatingca
Posts: 1
Joined: Aug 2010

beth

my father was just diagnosed with GBM grade 4. i would love to have this doctors details if you would send them to me.
thanks, chris

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

To all of you who posted about alternative therapies, I offer up these definitions from a favorite website. Now remember, this is all in fun - if you prefer not to read on and possibly feel insulted by it, remember, it's just one man's opinion ;) And mine, but that's beside the point...

* Homeopathy: giving patients medicines that contain no medicine whatsoever.
* Herbal medicine: giving patients an unknown dose of an ill-defined drug, of unknown effectiveness and unknown safety.
* Acupuncture: a rather theatrical placebo, with no real therapeutic benefit in most if not all cases.
* Chiropractic: an invention of a 19th century salesmen, based on nonsensical principles, and shown to be no more effective than other manipulative therapies, but less safe.
* Reflexology: plain old foot massage, overlaid with utter nonsense about non-existent connections between your feet and your thyroid gland.
* Nutritional therapy: self-styled ‘nutritionists’ making untrue claims about diet in order to sell you unnecessary supplements.
* Spiritual healing: tea and sympathy, accompanied by arm-waving.
* Reiki: ditto.
* Angelic Reiki. The same but with added “Angels, Ascended Masters and Galactic Healers”. Excellent for advanced fantasists.
* Colonic irrigation: a rectal obsession that fails to rid you of toxins which you didn’t have in the first place.
* Anthroposophical medicine: followers of the mystic barmpot, Rudolf Steiner, for whom nothing whatsoever seems to strain credulity
* Alternative diagnosis: kinesiology, iridology, vega test etc, various forms of fraud, designed to sell you cures that don’t work for problems you haven’t got.
* Any alternative ‘therapist’ who claims to cure AIDS or malaria: agent of culpable homicide.
* Libel: A very expensive remedy, to be used only when you have no evidence. Appeals to alternative practitioners because truth is irrelevant.

Thanks, all, hope nobody was offended.
stayingcalm

John_32's picture
John_32
Posts: 71
Joined: May 2010

Amen to that. My wife is Asian and her delusional family seems to have had more confidence in drinking green tea with honey, etc., ect., than in her actually pursuing the available medical treatments for cancer.

Nanci A
Posts: 1
Joined: Sep 2010

Hi Beth,

My sister also has been diagnosed with this awful beast. Radiation has taken no affect and the doctor is now wanting to start a new chemo therapy. For my sister and family this is very disheartening. Can you send the doctor details you received for your dad? Any help at this point for her to improve and have some quality of life left would be a blessing.

thank you

Nanci

sneskas
Posts: 1
Joined: Oct 2010

Please help me to save life to a child who diagnosed glioblastoma multiforme (grade 4)!!!!

Hello, my name is Snezana and I`m from Serbia. I found you on csn.cancer.org and I desperately need your help. You said something about the doctor from Kosovo, and Kosovo is near my town, Kosovo is still part of my country Serbia. Could you ,please give me his name and address or anything that you have about him. My friends son Lazar is 12 years old boy and doctors diagnosed him glioblastoma multiforme (grade 4) about month ago. Boy is now in hospital and he had few epileptic seizures.

PLEASE HELP ME FASTES AS YOU CAN TO FIND THIS DOCTOR AND SAVE LAZARS LIFE!

This is my email address: sneska.aqua@gmail.com

advance grateful Snezana !

Tarik
Posts: 1
Joined: May 2013

Hey Snjezana,

I wish all the best for Lazar.

I'm in a similar situation. Son of my sister has just received a diagnosis gliobastoma multiforme grade 4th The young man is 18 years old. We are all desperate and looking for help from all sides. Can you send me the info. about doctor from Kosovo or any useful advice.

My e-mail address: sanjadrace@gmail.com

Grateful Sanja

 

ericsnest
Posts: 2
Joined: Jan 2011

Hi Beth, my mom is 69 years old and has been battling GBM for the past 10 months. She had surgical removal of the tumor, chemo,
radiation and now intravenous radiation therapy. The doctors have indicated that there is nothing more that they can do.

I wanted to get the information about the doctor from kosovo in order to help my mother improve her condition.

Thanks,
Eric

Atish
Posts: 1
Joined: Feb 2011

Beth

My father also has GBM as of Jan 14th 2011. This have been really hard and is going to go on the same treatment. Im only 24 and it has really been hard on me and my family. We have his results going all over the to see if there is a better treatment out there. If you can email me back at my personal email that would be great. Lakhu12@gmail.com Thanks

Atish

Terry13
Posts: 1
Joined: Apr 2011

My father-in-law was just diagnosed with the same GBM as your father was. I would like to know what the medications were that were suggested by the doctor in Kosovo. Since your posting is from 2009, I hope you will receive this and tell me how it helped your father. Thanking you now for any response you might have.

patricia-mary
Posts: 1
Joined: Sep 2011

do you have the contact information for the doctor in kosovo

ravirajagopalan
Posts: 7
Joined: Oct 2011

Hi Beth, thanks for the response. My wife has just been diagnosed with GBM grade 4. Any help you can give will be appreciated. We will be seeing an oncologist soon.

samual
Posts: 1
Joined: Oct 2011

HEY BETH,
M from india,
so can u plz tell me who da doc. is , and if possible his email add.

-sam.samual87@gmail.com

batmanr
Posts: 3
Joined: Oct 2011

Hi,
I've already emailed you but am hoping that maybe you still check this page. Could you send me any information you have or even a name of this doctor in Kosovo? I'm looking for anything at all that may help.
Thanks

mimaor
Posts: 1
Joined: Dec 2011

can i ask what medecine the dr from kosovo ordered? my best friend has this cancer.

craigy1
Posts: 1
Joined: Dec 2011

hi beth could u forward me the details of the kosovan doctor as my son was diagnosed with gbm4 last sept he had surgery to remove as much of the tumour as possible but unfortunately as the 1st 2 chemos didnt work it grew bak however his 3rd chemo has managed to stop the rapid growing and his last 2 scans have been good the tumour is stil there but all the pressure has lifted from his brain so thats a blessing hope ur father is stil on the upgrade this news gives hope to all calum my son is 22 years old were from scotland and hes our very own braveheart!!!!!

pamirault
Posts: 1
Joined: Dec 2011

Beth,

My husband was diagnosed in july 2011 with GBM Grade 4. He went through a partial resection of the main tumor (they could not get it all) and followed up with 6 weeks of radiation, daily temodar and avastin every 14 days. Following the initial treatment they have continued a higher dose of temodar one week per month and recently discontinued the avastin due to high levels of protein in his urine. He is loosing the battle and I am watching him die. We have done everything possible to be accepted into a clincial trial for the cancer vaccine but not luck to date. Please share with me what treatments your contact in Kosovo is providing and how I may reach that doctor for help, this is urgent and I anxiously await your response. Thank you in advance for any help.

Pam

jhbeamer
Posts: 3
Joined: Dec 2011

Hello Beth,

My father is 68 and was diagnosed with GBM grade 4 last December. He had surgery to remove the primary tumor (70%)followed by radiation and chemo (Temodar). In October of this year the temodar was dicontinued (due to presumed tumor resistance) and now Dad is on Avastin. We are inspired by your message and certainly hope that your father continues to do well on his treatments. This is a devastating illness and I am searching for a cure! Would you please let us know the information about the doctor in Kosovo and the results you have had with this protocol? Or any other helpful treatments you have found.

I am writing this for my father, but am on his account so the email message with go to him. His name is John and he is looking
forward to hearing from you.

All our blessings to you.

Thank you,
JEnnifer and John

Mcoccclw
Posts: 1
Joined: Jan 2012

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

worried diane
Posts: 1
Joined: Jan 2013

Hi. My brother was just diagnosed with gliobastoma. He went through 5 hours of surgery. They said they got the tumor; however, there a little fingers with surround the wound and they can spread the cancer to other parts of the brain. He is too weak yet to undergo radiation or chemo. He is a retired Anglican Bishop that has never been sick in his entire life. He is 70 years and I know would like to live a good more many years. We do not know what to do at this point. I read your testimonial and alternative therapies. I was wondering if you could give me some information as to medicine your dad was prescribed. We are from Canada. Thank you for helping.

Diane

james55
Posts: 1
Joined: Jan 2013

Beth, my father has GBM. It's been 5 months since his tumor was removed.. The Dr. sent him home to die..  Do you still have The protocol from the Dr's in Kosovo??                 Thank you, James

Punse
Posts: 1
Joined: Feb 2013

dear Beth, could u please share doctors details, my friends daughter is suffering from it and falling down the hill. Punspunjabi@gmail.com, it's urgent, ur information can saVe one life 

MAJW
Posts: 2515
Joined: May 2009

PLEASE, PLEASE be careful of quackery..........

ryan1975
Posts: 2
Joined: May 2010

My father-in-law was just diagnosed with grade IV glioblastoma. Of course I have been searching the internet to find anything that can help him beat this deadly cancer. I can understand where people get duped into some of these claims by "so-called" doctors.

You need to check this website below to check on all of the scams out there.

http://www.quackwatch.org/index.html

arameyh
Posts: 1
Joined: Jun 2009

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.

EDClarke
Posts: 5
Joined: Aug 2011

If you are still out there, how is your dad doing?

natalyg
Posts: 6
Joined: Jun 2009

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! :)

Grantsnana
Posts: 3
Joined: Jun 2009

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.

rick8484
Posts: 3
Joined: Jun 2009

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 you

csharger's picture
csharger
Posts: 1
Joined: May 2008

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.

shirley_l
Posts: 9
Joined: May 2009

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

kempenl
Posts: 13
Joined: Jan 2005

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.

shirley_l
Posts: 9
Joined: May 2009

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.

shirley_l
Posts: 9
Joined: May 2009

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

Shirley

Grantsnana
Posts: 3
Joined: Jun 2009

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.

MAJW
Posts: 2515
Joined: May 2009

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.......

cpapa1084
Posts: 1
Joined: Sep 2009

From what I hear Dr. Friedman promises you the world and doesn't follow through

jeffballew
Posts: 9
Joined: Apr 2010

I go to Duke but see Dr. Peters who serves under Friedman.. what I like is that they don't talk in Timelines and statistics. Dr Peters has inoperable GBM Patients she hsa treated for 12 years or more and are still doing fine. The Preston Robert Tisch Brain Tumor Research Center at Duke is phenomenal, I like that I can still hope for a cure. I am 38 and have a Grade IV GBM that was surgically removed at Duke. Duke is close to a clinical trial of the Polio Virus being injected into the GBM site, and they are also extremely proactive in research and therapy. The hope there is a CURE, not treatment... Duke being a teaching Hospital is assuring as they want to advance the survivial of GBM patients.. they keep me positive.

cristina54
Posts: 2
Joined: Aug 2009

Dear Grantsnana: My husband was also diagnosed on 7/15/09 with GBM-4. He will start Radiation-Chemo by the end of this month. Thank you for your words of encouragement. I have been married for 32 years and we have 4 children. The youngest is almost 14. My husband was also very healthy never got sick or had any hospitalization. This is very hard. Thinking positive and praying to God every day is helping us to go day by day, enjoying every minute that we have. Thank you very much for your encouraging words. You, your husband and your family will be also in our prayers. God bless you.

Tiger729
Posts: 4
Joined: Nov 2010

We have been married for 40 years. My husband has had so many surgeries over the last ten years, we joke about him being the 10 Million Dollar Man. With every surgery up until this one, we have been told that he will be at least as good as when he had the surgery and the progression of the problem was stopped This one is different. They tell us that he has a GBM the size of a small orange over his right ear. They must do surgery and give no guarantees except that he will live through the surgery. He did and now we are praying for every second of life that he can live. The Surgeon said 6 to 24 months. How can this be? We have two beautiful daughters and two beautiful grandchildren.
We are to see a Dr. Karen Fink associated with the Baylor Cancer Program in Dallas, TX on December 6th. We do not know what to expect next.
He is doing great, has lots of energy and is a changed man. He says God has given him a chance and time to make things right in his life. He says he sees the seconds of his life flying by so fast that he can't move fast enough to keep up. He has reached out to his daughters in a way that I have prayed for. They now talk like friends, he is no longer critical of decisions that they make. They were a force to be reckoned with when he was in the ER. I am so proud of them. He has also reached out to family members that he has not talked to in years.
I am sorry for running on like this but I am nearly out of my mind. Reading your post sounds so much like what the road we are about to go down.
Please share some of what you faced. Thank you.

Dante
Posts: 9
Joined: Jan 2010

My husband was just diagnosed after Christmas with Grade 4 glioblastoma multiform. We started radiation and chemo (temodar) together. We are only one week in so it is too soon to tell. God bless and best wishes to you.

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