Glioblastoma Grade IV

Dante

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

GBM
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.

GMurphy

GBM Doing well with alternatives
Hi!
My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

The thing is she's doing REALLY well!! And the doctors are positively tickled.

I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

ryan1975

MAJW said:

ALternative therapy....
PLEASE, PLEASE be careful of quackery..........

Very true.....be very careful....
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

ambs108

Glioblastomas
Hi,

Im a 19 year old girl whos world recently came crushing down. My Dad was diagnosed with Glioblastoma stage 4 at the end of April 2010. Im currently living in Australia and my Dad lives in New Zealand. (there isn't as many support groups over here)

My Dad is only 53 years young and before any of this happened he was fit and healthy. (although a previous smoker)Dad was originally admitted to hospital after experiencing extemely painful headaches. We knew it was something serious as Dad hates hospitals and avoids any medical practice at all costs. After having a MRI they discovered that my Dad had a large brain tumour. 8cm x 6cm x 4 cms on the left side of his brain. They immediatly put him on steriods in effort to shrink the tumour. He was kept in the hospital for around 2 weeks. He was allowed to go home during the day and had to return to the hospital at night so he could be monitored. A few weeks later the scheduled Dad's operation the surgeon hoping to remove around 40% of his tumour. The surgeon advised my Dad of all the risks involved with the brain surgery,they feared that Dads short term memory and speech could be affected, he told Dad that he may not be able to talk at all after the operation.

After Dads operation he woke up talking much to all of our delight. The surgeon even managed to get out around 98% of his tumour which was fantastic news. It has since been just over 3 or 4 weeks since Dads operation and he is doing good. Slowly getting his memory back and his speech and concentration has improved significantly, although he gets tired very easily some days.

He is due to start radiation either this week or next week. He will have this 5 days straight for 6 weeks and then he will start taking the chemo in pill form until after christmas.

Every day and night I pray that Dad will still be around to walk me down the aisle or to meet his future grand kids.

I love my Dad with all my heart and it is truely so upsetting hearing your 'bullet proof' dad get upset when he has to tell you the dreaded words .... "I have cancer"

My Dad is the bravest and strongest person I have ever known and Im proud to call him Dad.

xxx

j_waffles

ambs108 said:

Glioblastomas
Hi,

Im a 19 year old girl whos world recently came crushing down. My Dad was diagnosed with Glioblastoma stage 4 at the end of April 2010. Im currently living in Australia and my Dad lives in New Zealand. (there isn't as many support groups over here)

My Dad is only 53 years young and before any of this happened he was fit and healthy. (although a previous smoker)Dad was originally admitted to hospital after experiencing extemely painful headaches. We knew it was something serious as Dad hates hospitals and avoids any medical practice at all costs. After having a MRI they discovered that my Dad had a large brain tumour. 8cm x 6cm x 4 cms on the left side of his brain. They immediatly put him on steriods in effort to shrink the tumour. He was kept in the hospital for around 2 weeks. He was allowed to go home during the day and had to return to the hospital at night so he could be monitored. A few weeks later the scheduled Dad's operation the surgeon hoping to remove around 40% of his tumour. The surgeon advised my Dad of all the risks involved with the brain surgery,they feared that Dads short term memory and speech could be affected, he told Dad that he may not be able to talk at all after the operation.

After Dads operation he woke up talking much to all of our delight. The surgeon even managed to get out around 98% of his tumour which was fantastic news. It has since been just over 3 or 4 weeks since Dads operation and he is doing good. Slowly getting his memory back and his speech and concentration has improved significantly, although he gets tired very easily some days.

He is due to start radiation either this week or next week. He will have this 5 days straight for 6 weeks and then he will start taking the chemo in pill form until after christmas.

Every day and night I pray that Dad will still be around to walk me down the aisle or to meet his future grand kids.

I love my Dad with all my heart and it is truely so upsetting hearing your 'bullet proof' dad get upset when he has to tell you the dreaded words .... "I have cancer"

My Dad is the bravest and strongest person I have ever known and Im proud to call him Dad.

xxx

Might I suggest alternative
Might I suggest alternative therapies for your dad? My dad had a Grade 4 OligoAstrocytoma and wasn't doing so well right after his surgery and during chemo when he was 38, but now he's 52 and going strong! And it's mostly thanks to some holistic and complementary medicine treatments he did. My dad now runs marathons and maintains a health diet with no processed sugars.

HeartofSoul

j_waffles said:

Might I suggest alternative
Might I suggest alternative therapies for your dad? My dad had a Grade 4 OligoAstrocytoma and wasn't doing so well right after his surgery and during chemo when he was 38, but now he's 52 and going strong! And it's mostly thanks to some holistic and complementary medicine treatments he did. My dad now runs marathons and maintains a health diet with no processed sugars.

i would be very careful of
i would be very careful of relying on holistic and complementary medicine treatments for making any measurable or impact for any cancer or stage. Research in depth at the top cancer centers in US and ask many brain cancer survivors and caregivers too. You can then compare what you learned to holistic treatments including diet, tea, herbs, accpunture, vitamins, spiritaul, juices and on ..........................................

Holistic and comp medicine can be used WITH conventional treatments but not as a primary solution.

Read MD Anderson web site on brain cancer straegies and focus on Grade 4 OligoAstrocytoma

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/brain-cancer/index.html

j_waffles

HeartofSoul said:

i would be very careful of
i would be very careful of relying on holistic and complementary medicine treatments for making any measurable or impact for any cancer or stage. Research in depth at the top cancer centers in US and ask many brain cancer survivors and caregivers too. You can then compare what you learned to holistic treatments including diet, tea, herbs, accpunture, vitamins, spiritaul, juices and on ..........................................

Holistic and comp medicine can be used WITH conventional treatments but not as a primary solution.

Read MD Anderson web site on brain cancer straegies and focus on Grade 4 OligoAstrocytoma

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/brain-cancer/index.html

Totally agree
Sorry, I meant holistic in ADDITION to the western treatments (surgery, chemo, radiation). Though he never had radiation, since our neurologist doesn't think it's worth it with all the side-effects down the road. You're right.. it's good to research things to keep better informed in the treatments. My tumor is only Grade 2, thankfully, but it's never too early to know my facts on therapies, diet and lifestyle.

HeartofSoul

j_waffles said:

Totally agree
Sorry, I meant holistic in ADDITION to the western treatments (surgery, chemo, radiation). Though he never had radiation, since our neurologist doesn't think it's worth it with all the side-effects down the road. You're right.. it's good to research things to keep better informed in the treatments. My tumor is only Grade 2, thankfully, but it's never too early to know my facts on therapies, diet and lifestyle.

I read your profile and
I read your profile and posts and I think highly of your attitude, spirit, and humor. Your young and have so much life in front of you of which you can look back 40 yrs from now and say, "i made the most of it"

j_waffles

HeartofSoul said:

I read your profile and
I read your profile and posts and I think highly of your attitude, spirit, and humor. Your young and have so much life in front of you of which you can look back 40 yrs from now and say, "i made the most of it"

Heck yes!
Thanks! My positive attitude is part of the healing, actually

pinzou

bethanyd 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

Doctor in Kosovo
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

bethanyd 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

GBM Doctors
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

megu2day

Clinical trial
Hi!

Just got back from UC San Francisco today with my Mother in law (stage 4 glioblastoma. they are doing clinical trials for a vaccine that utilizes the tumor itself as a protein to adhere to the white blood cells. It is themn re-injected into the patient to "retrain" the body to kill the cancer cells. My Mother in law will be undergoing surgery on Thursday the 22nd. then a course of radiation and chemo. If the cells quit reproducing, this protocol is good to go. We are in dire straits as well, so this is our beacon of hope.

Prayers to your Dad,

Greg

megu2day

j_waffles said:

Heck yes!
Thanks! My positive attitude is part of the healing, actually

Guilty!
I read your profile as well. As a patient of Hairy Cell Leukemia in my 19th year of remission (10 was the max according to conventional wisdom), I agree with the laughter is the best medicine approach. ANYONE can be the exception!

Good health,

Greg

4hisglory720

megu2day said:

Clinical trial
Hi!

Just got back from UC San Francisco today with my Mother in law (stage 4 glioblastoma. they are doing clinical trials for a vaccine that utilizes the tumor itself as a protein to adhere to the white blood cells. It is themn re-injected into the patient to "retrain" the body to kill the cancer cells. My Mother in law will be undergoing surgery on Thursday the 22nd. then a course of radiation and chemo. If the cells quit reproducing, this protocol is good to go. We are in dire straits as well, so this is our beacon of hope.

Prayers to your Dad,

Greg

please respond with any updates
My 25 year old, father of a 2 yr old and 9 mo old, cousin was diagnosed on Tuesday, July 20, 2010 with stage IV glioblastoma he also had surgery to remove any that the could see over 99%- as close to 100% as you can with this type of cancer and I would be interested in any follow up that your mother in law has had with this vaccine trial.

Thank you,
An'drea

beatingca

bethanyd 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

GBM
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

bethanyd 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

Alt therapies
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

stayingcalm said:

Alt therapies
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

Amen to that. My wife is
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.

MAJW

4hisglory720 said:

please respond with any updates
My 25 year old, father of a 2 yr old and 9 mo old, cousin was diagnosed on Tuesday, July 20, 2010 with stage IV glioblastoma he also had surgery to remove any that the could see over 99%- as close to 100% as you can with this type of cancer and I would be interested in any follow up that your mother in law has had with this vaccine trial.

Thank you,
An'drea

Vaccine........
My best friend has GLB multiforme stage IV......the vaccine you are referring to .....it has to start with the FIRST initial surgery.......taking a piece of the tumor and essentially making a vaccine for that particual person......this is what she has been told......

Peace be with you......

rickmele

MAJW 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!

Hang in there
How is your best friend doing ? My brother was diagnosed with GBM grade 4 a couple month ago. After radiation and temedor the tumor has grown 25%. The oncologist basically said theres nothing more that can be done and that we should just try to have him enjoy life as much as possible for the time he has left. We are heartbroken. Do you think ongoing use of temador was helpful in your friends case ?
We are seeing the brain surgeon in a couple days to get his asessment. In the first surgery they were only able to remove about 10% of the tumor.

Thanks

Nanci A

bethanyd 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,
My sister also has
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