glioblastoma level 4 brain tumor survivors

alutiiqmom said:

What I have found
We have not used this doctor, but he looks very knowledgable: John Hopkins, Dr. Friedman. If I had to have further treatment for my daughter, I would use Dr. Friedman. My daughter was only 17 years old when she was diagnosed so we used a pediatric doctor. She had excellent care. What I do is look at the blog for her type of cancer and she was treatments and hospitals that people are getting. The most important thing for you to do right now is to pray and read your bible. God Bless you on this journey.
Love, Edna

new guy
Its so crazy, if its an accident u deal with it, but ur life changing for 1 day 2 other by an illness o my God.
My husband had change in hes personally this is the beginnig of 2012.unable 2 control hes high blood pressure & high cholesterol so we were thinking stroke he had lost of memory limp in 1 leg & stop being able 2 talk,this in about a week time. So we when 2 emergency room where we were told it was a tumor, i have Faith so there i started praying & thank God now we kn. 10/9/12 we fine out, on the 10/17/1surgery,10/24/12 we fine out Glioblastoma WOW.

Scottgri said:

Trial Info
Yes, it was operable, I was very lucky, it was right near my skull near my ear...away from the important stuff.

I couldn't find the exact link for my trial, but here is one with the trials currently going on at Duke.

http://www.cancer.duke.edu/btc/modules/ClinicalTrials4/index.php?id=2

I see some for recurrent patients! My last doc was talking about vaccines were starting to show some real promise for recurrence.

I still remember vividly 20 months ago when I was asking questions about what to do if the trial wasn't working, the kindest nurse looked me in eye and said, "we have lots of options for you here.". Man, after 2 weeks of extreme pessimism from other professionals I got that answer and I have never looked back.

I just had my every 3 week Avastin last week, feeling good and ready to enjoy the holidays!

question on trial
Hi:

So, what did your trial entail? What did they do or what meds? Sarah is taking Avastin every three weeks also. I hope to find out what your trial is. Unfortunately, Sarah's new tumor is not operable, but I am hopeful! They are doing radiation coupled with the Avastin. I guess that is kind of new too, but they think that hopefully, the Avastin makes the radiation more effective.

I am very happy for you! Live the life to the fullest. God Bless.

Edna and Sarah

alutiiqmom said:

question on trial
Hi:

So, what did your trial entail? What did they do or what meds? Sarah is taking Avastin every three weeks also. I hope to find out what your trial is. Unfortunately, Sarah's new tumor is not operable, but I am hopeful! They are doing radiation coupled with the Avastin. I guess that is kind of new too, but they think that hopefully, the Avastin makes the radiation more effective.

I am very happy for you! Live the life to the fullest. God Bless.

Edna and Sarah

I was getting 300mg Temodar for five days plus Avastin every other week at 10mg/kg. I originally started with 400 mg but it wiped out my platelets and white blood cells so they dropped it. That regimen went on for almost 12 months, now on Avastin for 12 months at 15mg/kg

Fredrickb said:

15 months and going strong
Hello phillip1950. I was diagnosed with GBM 4 is August 2011. I had surgery Sept 2, 2011 with 100% removal of the tumor. Went on radiation, avastin and temodar. Still on avasitn every 2 weeks and temodar for 5 days every 28 days. So far all MRI's are clear. Working full time feeling great. Just turned 57 2 days ago. God bless you. There is lots of hope! I believe a cure will be found. In the mean time; the best medicine is a positive attitude and sense of humor!

Amen!
Hi Fredrick:

You have been blessed. Wishing you many more years. Very happy for you.

Edna and Sarah

japon said:

inspired
My husband was just diagnosed,10/20/12 i was feeling very down thank u for your words,god bless u & your loves.
Bell

My Stage 4 Glioblastoma Multiform experiences and treatments
My Stage 4 Glioblastoma Multiform experiences and treatments and results so far.

This may seem long since it is an accumulation of much web searching and condensing known facts into 1 document. I sincerely hope it helps someone or everyone to know this diagnosis is not necessarily a death sentence. After my first 4 treatments the Oncologist said that on a scale of 1 to 10, my condition was then a 6. After a month, I asked him the same question and he said it was now a 4. I’ll ask him again when we meet on December 18th 2012 where it ranks. I think that has been pretty fast work considering on what it is.


2 MRI’s ago, the Oncologist said a large area of the mass looked like Swiss cheese which was a good sign. My MRI last week showed that whole area gone and no tumor anywhere with the spot fully healed. The third spot shows the tumor has shrank substantially and he is very optimistic. He is now changing my treatment to AVASTIN. My main concern there is the possible side effects. I’ll discuss this with him when we meet on the 18th of December, 2012 along with what other things will be done.

Before I go on, let me say that I am a Christian; all of my friends and family are Christians and Jews of some denomination or other and of different races and they all have me in their prayers. I have been a prayer person all my life and am a witness to how important this really is. Big burley guys are decent too!!! Now, I’m not perfect and will have a lot of explaining to do when I do go to heaven but, right now, that seems to be in the distant future. I’m not afraid to die since we all have that to look forward to. Like the song says, “everyone wants to go to heaven but no one wants to go today’ !!! If this doesn’t get me, something along the way eventually will. So what I’m saying is: plenty of prayer from you, friends and family is what really works, the rest is what God has enabled the surgeons and doctors to do to help us. Having a caring and loving spouse is next to Godliness. My Oncologist gives me a huge hug every time he sses me. The surgeon says “God bless you” after every visit. They are all 3 in their 40’s.

Profile:
…Turned 63 (white male) in January, 2012…..Was diagnosed in March 2012
…Very positive person although I face reality head on. I love telling jokes and have one or more for every occasion.
…Was single (divorced) with 1 son since age 32. Dated and finally decided to marry a wonderful woman whom I dated for years, we didn’t want to just jump into anything I guess. We both joked that we only wanted to split our stuff once (first marriages) Got remarried in March 2012, days before our well planned wedding day, I was diagnosed. We figured why let this nasty thing stop something we had planned for a long time. I told her it isn’t a customary wedding gift but it comes with the package.
…Have been healthy all my life, not having more than an occasional head cold through the years. I worked for a company for 35 years with no sick time taken (didn’t need it). One of my bosses said “ya gotta be sick to have that kind of perfect attendance”
…Am 6’0” and over the years weight has stayed between 195 and 225 pounds. Currently 212 pounds.
…Have always exercised although not rigorously. Exercise training came from high school football team and Army training (infantry) along with some specialized training all of which were mostly lots of running and push-ups. In my 20’s through my 50’s, did some daily jogging, hiking and bicycling. My career job was as an IT professional so, I made it a point to take walks around the building every hour or more. I love the feel and comfort using a wood stove gives so I am constantly cutting, splitting and stacking firewood. I am very active physically and mentally.
…I always took supplements via multivitamins along with eating all the foods recommended to be good for you. Yes, I did eat some junk, anything with chocolate and peanuts or peanut butter!!! I love pizza, steaks, seafood and shell fish too!!! I was never much on fast food although at times, yep, I ate the salt burgers.
…I have no plaque build up and have always had perfect blood pressure readings. My new wife always kids me about the report the doctor gave me when I was aged 60 and had a nuclear stress test done….the veins of a 16 year old. At first I was proud but then I realized with all the junk food kids eat today, that may not be so good!!!

Well guess what??? With all of that said, I was diagnosed with Stage 4 Multiform Glioblastoma. Needless to say, I was the last person friends and family expected to hear a diagnosis like that.

Symptoms I had
I would get a twitching in my thumb that would last a minute or so, causing the thumb to move back and forth. I’ve since learned this was called a “focal seizure”. Sometimes, my right temple would pulse. On my right hand, my little finger and the finger next to it became somewhat weaker and caused me to drop things. I went to my doctor and his prognosis was tendonitis. Well, I kept getting those twitches so a few days later, I went to a place called “Doctors Express” which my insurance company recommends one go to before going to the hospital. My blood pressure was 200+/151. I went to the emergency room and it took them hours to get the blood pressure down but couldn’t get it even close to an acceptable levels. They did an MRI and found the mass on the left side of brain. It was in an area that controlled the hand and wrist and was about the size of a walnut.

Options offered me
I met with a Neurosurgeon…Doctor Neal Naff who works out of the hospital I went to…St. Josephs’ Medical Center here in Maryland. He also has offices at nearby Johns Hopkins and Merci hospitals. He said that if I did nothing, I would go into a coma in 2 months and then die. He could operate and remove that part of the brain but that would leave me as an invalid the rest of my life, paralyzed on the right side. He said he would need a biopsy and send it to various Cancer Centers around the country to appraise what course of action should be taken. So, by the following week of having been diagnosed, he operated and took a biopsy (small fragment to be analyzed). It came back as malignant and that with Temodar and radiation would be compatible with my body. He said that he could only say that this would give me at least14 months at most to live. He immediately set me up with 2 of his associates…Doctor Citron for radiology and Doctor Gafar for Oncology. After some research, I found all 3 of these doctors to be “first in class”. All 3 agreed that over the past 10 years, this method I’m about to explain will give 14 months of life and then “more innovative methods” would be employed. After taking the biopsy, my right hand was almost useless. Dr. Naff said it takes a while for the brain to either repair itself or reroute commands. The hand gets better each week and I’m back to splitting and stacking wood, cutting the lawn, driving the car, etc.

Treatments

1---Radiation
5 weekdays for 25 sessions. I had a full head of hair but where the radiation was given and where the hair was removed to do the biopsy, it was bald so my wife shaves my whole head with clippers. All the hair is now growing back but my younger family members think it looks cool from the scar up the side of my shaved head. Someone mentioned a tattoo but that’s just not me.
2---Temodar 42 times in conjunction with the radiation then take a break for a month and then 5 days on Temodar and off for 23 days and then again for 5 days then off 23 days and so on for 6 months. I took the Temodar at 11 pm each night. A half hour before taking it, I took an anti-nausea pill. I never had nausea or anything else from that treatment. There were times I would take a nap after lunch because I felt a little tired but, I would always get up and go outside and do something, even if it was wrong!!! Sometimes I would get winded and would sit down for 5 minutes or so and then get back out there!
3---Stool softeners---Geeeezz, I would take 1 after every meal and 2 before bedtime. My first bout with using Temodar taught me that very quick. It was like I would imagine giving childbirth to a 10 pound baby through that area. As they say, it doesn’t make you go, it just makes it easier.
4---Sulfa drug. As explained to me, it removes fluids from the treated area and prevents possible infections in any scar tissue.
5---Steroids to help shrink the tumor making it easier to be more potent to fight the tumor.

What has been working for me

I researched every cancer fighting information article and white paper I could find and found some very useful stuff. I also found very many people who exploit the fear and anxiety of people who have cancer and will try to suck your bank account dry. I feel this way, if they are charging for it, forget it!!!!! I will outline below exactly what I found out..free. When I first mentioned these to my Oncologist, the first words out of his mouth were “I see success here”. I told the doctor I’m depending on him but I surely want him to have a good specimen to work with.

1---Alkalinity (non-acid environment)
Cancer cannot survive in an alkaline environment, cancer cells will die!! You want your PH to be neutral. I have a well system and the PH of the water is 6.5, very slightly acidic. A PH of 7.0 is neutral. Using small amounts of common baking soda until a gallon of water reached a PH of 8.0 is what I use for drinking and cooking, drink 8, 8 ounce glasses a day. It’s ok to squirt a little product called Mio into it for flavor. I find it at Wal-Mart in the juice aisle. It doesn’t change the PH so much but does add to the taste bud variety. Too much alkalinity causes it’s own problems with health and the taste of things. I wouldn’t go over 9.0. Only eat foods that are non-acidic. There are some foods that are acidic when eaten but are alkaline forming when digested, these are ok. Munchies should be green vegetables, throughout the day. I personally just eat 3 meals a day with no red meat whatsoever. Chicken, fish, turkey are good examples of meat than can be eaten. There are good resources on the web with outlines of acidic/non-acidic foods.

2---No sugar
We buy no products with sugar added. When you read the contents of an item, make certain you use a product with no sugar added!!!! Sugar once processed through the body goes to the brain as glucose just as anything else you consume. However, processed sugar gets processed differently. At the site of the tumor, processed sugars become ethanol which tumors feed on…..no sugar…there went my M&Ms and Reese cups.

3---Oxygen
Cancer cannot live in a high oxygen environment, period. Oxygen kills cancer quickly. Too much oxygen has it’s own issues with ones health so don’t go grabbing an oxygen bottle. Try to keep your oxygen level between 95 and 98 percent. You can buy one of those things you put on the end of your finger that give you an oxygen level of your blood, at any drug store or Wal-Mart. The best way to keep oxygen levels within that range is exercise. Something as simple as taking a walk lasts for hours keeping oxygen levels within this range.

4---DO NOT consume products as known ANTI-OXIDANTS.
Oxygen kills cancer, anti-oxidants counter-act that measure.

5---Turmeric
Turmeric is a common spice that can be bought from the spice aisle in any grocery store anywhere. It shrinks tumors and supposedly can pass the blood/brain barrier. I think Cumin is the same thing but just another name for Turmeric. It’s great on sweet potatoes, regular potatoes, salads, etc. It is also a blood thinner so if you do as I do, put it on everything, you’ll bruise easily. I can deal with the bruises, I wanted this nasty thing in my head gone!! The combination of prayer, conventional treatment and supplemental vitamin treatment has worked great for me.

6---I take 3 vitamins I found to be of use. Odorless Garlic Tablets 2000 mg. The smell in garlic is from sulfur. I figure the sulfur would augment the sulfur drug and the Oncologist said he had no problem with me taking it. Vitamin D3 400 iu D3 is very important for the immune system. Don’t stay with plain old vitamin D, use vitamin D3. Vitamin B-12 500 mcg,2 times a day. I take the second one 10 minutes after the first. Use the sub-lingual ones that melt under you tongue. This is a vitamin that gives you energy!!!! Regular B-12 pills don’t absorb into the body from the stomach as well.

I’ll keep you posted here. If too many object, we’ll go the email route.

Fredrickb said:

15 months and going strong
Hello phillip1950. I was diagnosed with GBM 4 is August 2011. I had surgery Sept 2, 2011 with 100% removal of the tumor. Went on radiation, avastin and temodar. Still on avasitn every 2 weeks and temodar for 5 days every 28 days. So far all MRI's are clear. Working full time feeling great. Just turned 57 2 days ago. God bless you. There is lots of hope! I believe a cure will be found. In the mean time; the best medicine is a positive attitude and sense of humor!

Brent Marrowbone, 47, dies, malpractice of doctor?
My significant other who has survived glioblastoma since 2007, was given avastin when his intact operable tumor was sighted growing back in January 2012, after his surgery late November 2011. His Rapid City Oncologist, orders Avastin chemotherapy, it's given every other day for 3 regiments. He said the tumor was gone at the targeted area, but was sullen, he had a new site of cancer at the back of his head. He said the Avastin wasn't working, then we consult with neurosurgeon who said it was. He was told to follow up with radiation. The National Brain Tumor Association orders that radiation is used first, then cancer fighting medicine in chemotherapy can be used, even as a local to the site of the tumor. The problem is that the cancer in Brent wasn't shrunk, but instead spread to all over his brain in several lesions, his oncologist never showed us the MRI's, he just said everything looked good in June 2012. I noticed he couldn't get around anymore like he used to, he was really bad in mobility by the end of July. MRI's in Mason City, Iowa revealed several legions all over his brain. He passed away September 29th, 2012.

Uncle_Ted said:

My Stage 4 Glioblastoma Multiform experiences and treatments
My Stage 4 Glioblastoma Multiform experiences and treatments and results so far.

This may seem long since it is an accumulation of much web searching and condensing known facts into 1 document. I sincerely hope it helps someone or everyone to know this diagnosis is not necessarily a death sentence. After my first 4 treatments the Oncologist said that on a scale of 1 to 10, my condition was then a 6. After a month, I asked him the same question and he said it was now a 4. I’ll ask him again when we meet on December 18th 2012 where it ranks. I think that has been pretty fast work considering on what it is.


2 MRI’s ago, the Oncologist said a large area of the mass looked like Swiss cheese which was a good sign. My MRI last week showed that whole area gone and no tumor anywhere with the spot fully healed. The third spot shows the tumor has shrank substantially and he is very optimistic. He is now changing my treatment to AVASTIN. My main concern there is the possible side effects. I’ll discuss this with him when we meet on the 18th of December, 2012 along with what other things will be done.

Before I go on, let me say that I am a Christian; all of my friends and family are Christians and Jews of some denomination or other and of different races and they all have me in their prayers. I have been a prayer person all my life and am a witness to how important this really is. Big burley guys are decent too!!! Now, I’m not perfect and will have a lot of explaining to do when I do go to heaven but, right now, that seems to be in the distant future. I’m not afraid to die since we all have that to look forward to. Like the song says, “everyone wants to go to heaven but no one wants to go today’ !!! If this doesn’t get me, something along the way eventually will. So what I’m saying is: plenty of prayer from you, friends and family is what really works, the rest is what God has enabled the surgeons and doctors to do to help us. Having a caring and loving spouse is next to Godliness. My Oncologist gives me a huge hug every time he sses me. The surgeon says “God bless you” after every visit. They are all 3 in their 40’s.

Profile:
…Turned 63 (white male) in January, 2012…..Was diagnosed in March 2012
…Very positive person although I face reality head on. I love telling jokes and have one or more for every occasion.
…Was single (divorced) with 1 son since age 32. Dated and finally decided to marry a wonderful woman whom I dated for years, we didn’t want to just jump into anything I guess. We both joked that we only wanted to split our stuff once (first marriages) Got remarried in March 2012, days before our well planned wedding day, I was diagnosed. We figured why let this nasty thing stop something we had planned for a long time. I told her it isn’t a customary wedding gift but it comes with the package.
…Have been healthy all my life, not having more than an occasional head cold through the years. I worked for a company for 35 years with no sick time taken (didn’t need it). One of my bosses said “ya gotta be sick to have that kind of perfect attendance”
…Am 6’0” and over the years weight has stayed between 195 and 225 pounds. Currently 212 pounds.
…Have always exercised although not rigorously. Exercise training came from high school football team and Army training (infantry) along with some specialized training all of which were mostly lots of running and push-ups. In my 20’s through my 50’s, did some daily jogging, hiking and bicycling. My career job was as an IT professional so, I made it a point to take walks around the building every hour or more. I love the feel and comfort using a wood stove gives so I am constantly cutting, splitting and stacking firewood. I am very active physically and mentally.
…I always took supplements via multivitamins along with eating all the foods recommended to be good for you. Yes, I did eat some junk, anything with chocolate and peanuts or peanut butter!!! I love pizza, steaks, seafood and shell fish too!!! I was never much on fast food although at times, yep, I ate the salt burgers.
…I have no plaque build up and have always had perfect blood pressure readings. My new wife always kids me about the report the doctor gave me when I was aged 60 and had a nuclear stress test done….the veins of a 16 year old. At first I was proud but then I realized with all the junk food kids eat today, that may not be so good!!!

Well guess what??? With all of that said, I was diagnosed with Stage 4 Multiform Glioblastoma. Needless to say, I was the last person friends and family expected to hear a diagnosis like that.

Symptoms I had
I would get a twitching in my thumb that would last a minute or so, causing the thumb to move back and forth. I’ve since learned this was called a “focal seizure”. Sometimes, my right temple would pulse. On my right hand, my little finger and the finger next to it became somewhat weaker and caused me to drop things. I went to my doctor and his prognosis was tendonitis. Well, I kept getting those twitches so a few days later, I went to a place called “Doctors Express” which my insurance company recommends one go to before going to the hospital. My blood pressure was 200+/151. I went to the emergency room and it took them hours to get the blood pressure down but couldn’t get it even close to an acceptable levels. They did an MRI and found the mass on the left side of brain. It was in an area that controlled the hand and wrist and was about the size of a walnut.

Options offered me
I met with a Neurosurgeon…Doctor Neal Naff who works out of the hospital I went to…St. Josephs’ Medical Center here in Maryland. He also has offices at nearby Johns Hopkins and Merci hospitals. He said that if I did nothing, I would go into a coma in 2 months and then die. He could operate and remove that part of the brain but that would leave me as an invalid the rest of my life, paralyzed on the right side. He said he would need a biopsy and send it to various Cancer Centers around the country to appraise what course of action should be taken. So, by the following week of having been diagnosed, he operated and took a biopsy (small fragment to be analyzed). It came back as malignant and that with Temodar and radiation would be compatible with my body. He said that he could only say that this would give me at least14 months at most to live. He immediately set me up with 2 of his associates…Doctor Citron for radiology and Doctor Gafar for Oncology. After some research, I found all 3 of these doctors to be “first in class”. All 3 agreed that over the past 10 years, this method I’m about to explain will give 14 months of life and then “more innovative methods” would be employed. After taking the biopsy, my right hand was almost useless. Dr. Naff said it takes a while for the brain to either repair itself or reroute commands. The hand gets better each week and I’m back to splitting and stacking wood, cutting the lawn, driving the car, etc.

Treatments

1---Radiation
5 weekdays for 25 sessions. I had a full head of hair but where the radiation was given and where the hair was removed to do the biopsy, it was bald so my wife shaves my whole head with clippers. All the hair is now growing back but my younger family members think it looks cool from the scar up the side of my shaved head. Someone mentioned a tattoo but that’s just not me.
2---Temodar 42 times in conjunction with the radiation then take a break for a month and then 5 days on Temodar and off for 23 days and then again for 5 days then off 23 days and so on for 6 months. I took the Temodar at 11 pm each night. A half hour before taking it, I took an anti-nausea pill. I never had nausea or anything else from that treatment. There were times I would take a nap after lunch because I felt a little tired but, I would always get up and go outside and do something, even if it was wrong!!! Sometimes I would get winded and would sit down for 5 minutes or so and then get back out there!
3---Stool softeners---Geeeezz, I would take 1 after every meal and 2 before bedtime. My first bout with using Temodar taught me that very quick. It was like I would imagine giving childbirth to a 10 pound baby through that area. As they say, it doesn’t make you go, it just makes it easier.
4---Sulfa drug. As explained to me, it removes fluids from the treated area and prevents possible infections in any scar tissue.
5---Steroids to help shrink the tumor making it easier to be more potent to fight the tumor.

What has been working for me

I researched every cancer fighting information article and white paper I could find and found some very useful stuff. I also found very many people who exploit the fear and anxiety of people who have cancer and will try to suck your bank account dry. I feel this way, if they are charging for it, forget it!!!!! I will outline below exactly what I found out..free. When I first mentioned these to my Oncologist, the first words out of his mouth were “I see success here”. I told the doctor I’m depending on him but I surely want him to have a good specimen to work with.

1---Alkalinity (non-acid environment)
Cancer cannot survive in an alkaline environment, cancer cells will die!! You want your PH to be neutral. I have a well system and the PH of the water is 6.5, very slightly acidic. A PH of 7.0 is neutral. Using small amounts of common baking soda until a gallon of water reached a PH of 8.0 is what I use for drinking and cooking, drink 8, 8 ounce glasses a day. It’s ok to squirt a little product called Mio into it for flavor. I find it at Wal-Mart in the juice aisle. It doesn’t change the PH so much but does add to the taste bud variety. Too much alkalinity causes it’s own problems with health and the taste of things. I wouldn’t go over 9.0. Only eat foods that are non-acidic. There are some foods that are acidic when eaten but are alkaline forming when digested, these are ok. Munchies should be green vegetables, throughout the day. I personally just eat 3 meals a day with no red meat whatsoever. Chicken, fish, turkey are good examples of meat than can be eaten. There are good resources on the web with outlines of acidic/non-acidic foods.

2---No sugar
We buy no products with sugar added. When you read the contents of an item, make certain you use a product with no sugar added!!!! Sugar once processed through the body goes to the brain as glucose just as anything else you consume. However, processed sugar gets processed differently. At the site of the tumor, processed sugars become ethanol which tumors feed on…..no sugar…there went my M&Ms and Reese cups.

3---Oxygen
Cancer cannot live in a high oxygen environment, period. Oxygen kills cancer quickly. Too much oxygen has it’s own issues with ones health so don’t go grabbing an oxygen bottle. Try to keep your oxygen level between 95 and 98 percent. You can buy one of those things you put on the end of your finger that give you an oxygen level of your blood, at any drug store or Wal-Mart. The best way to keep oxygen levels within that range is exercise. Something as simple as taking a walk lasts for hours keeping oxygen levels within this range.

4---DO NOT consume products as known ANTI-OXIDANTS.
Oxygen kills cancer, anti-oxidants counter-act that measure.

5---Turmeric
Turmeric is a common spice that can be bought from the spice aisle in any grocery store anywhere. It shrinks tumors and supposedly can pass the blood/brain barrier. I think Cumin is the same thing but just another name for Turmeric. It’s great on sweet potatoes, regular potatoes, salads, etc. It is also a blood thinner so if you do as I do, put it on everything, you’ll bruise easily. I can deal with the bruises, I wanted this nasty thing in my head gone!! The combination of prayer, conventional treatment and supplemental vitamin treatment has worked great for me.

6---I take 3 vitamins I found to be of use. Odorless Garlic Tablets 2000 mg. The smell in garlic is from sulfur. I figure the sulfur would augment the sulfur drug and the Oncologist said he had no problem with me taking it. Vitamin D3 400 iu D3 is very important for the immune system. Don’t stay with plain old vitamin D, use vitamin D3. Vitamin B-12 500 mcg,2 times a day. I take the second one 10 minutes after the first. Use the sub-lingual ones that melt under you tongue. This is a vitamin that gives you energy!!!! Regular B-12 pills don’t absorb into the body from the stomach as well.

I’ll keep you posted here. If too many object, we’ll go the email route.

Please let me know what you find out about Avastin
My significant other, Brent Marrowbone, 47, passed away after his Oncologist used Avastin in chemotherapy in February 2012, it wasn't weeks apart but days apart. It caused his operable intact brain tumor to spread. It was gone at the original right frontal lobe, but appeared that it broke up and a new sight was at the back of his brain. I was confused because he said it wasn't working, his neurosurgeon said it was. The neurosurgeon showed us the MRI images, the oncologist never did. Richard Tenglin, of Rapid City, SD Cancer Care Center, was confusing all along, like he had known the final outcome, but was holding back from telling us the truth that the cancer is spread and was all over his brain. He verbally tells us after the radiation that everything looks good. We move to NE Iowa in early July. I discovered Brent was having trouble getting around, by the end of June I called an ambulance to get him because he was scooting on the floor for 3 days and I couldn't get him up anymore. The MRI results of Mason City's Mercy Medical Clinic was that there was several lesions of cancer all over his brain. As I found out later, just 2 weeks before his death on September 29th, that it was even on the left side of his brain. These doctors everywhere are hestitant to report to the survivors that the other doctor misused or overused too high of a dose of it, went out of order in protocol, etc. Radiation was to be used first, according to the national brain tumor association. Their packet was the first time I learned that Avastin can cause a bleed at the site of the tumor, which for Brent allowed the cancer to spread all over and take his life within 7 months of use.

Scottgri said:

Avastin for 18 months
I had a 3cm GBM removed in March 2011. I've been on Avastin every other week for 18 months plus now, after radiation and in conjunction with Temodar. No doubt these drugs are toxic and harsh on the body. Temodar took a heavy toll on me, ended up needing a platelet transfusion and neutrophil injections my numbers were so low. I'm no doctor, but it seems to me these GBMs are so nasty and kill so quickly it takes harsh drugs to get rid of it. I had a clean (cold) PET scan in September and will be off of the Avastin probably in July 2013.

Avastin
Well...here's my two cents' worth....

David took Avastin and after a few treatments, he seemed worse. We were surprised and greatly dismayed and very, very upset because we were told that Avastin was going to make David's symptoms much better. We were almost guaranteed that it would bring at least some short term improvement. After a few treatments, David had another MRI that showed a "significant" brain bleed and they immediately discontinued the Avastin treatments. I suspected that it was from some sort of complication from Avastin. The doctors said that David's brain bleed could have been caused by other things but the timing was too coincidental for me to think it was from anything other than the Avastin. But who knows...even the doctors didn't really know.

However, David had experienced tiny bleeds before he took Avastin. Right before his second craniotomy in Sept. 2011, an emergency CT showed tiny pinpoints of blood coming from the tumor. He was scheduled for surgery the next day, so they admitted him on the spot and kept him overnight in the Neuro Intensive Care Unit, just to be safe. The next day they removed approx 90% of the tumor and the portion they removed was the area where the tiny bleeds were located. They were minuscule compared to the brain bleed he suffered after Avastin, though. And the bleed after Avasin was in an area beyond the tumor's location.

I've talked with several people who have had loved ones experience brain bleeds after Avastin, and also several who had significant improvement after using Avastin. I believe that overall, more people are helped by Avastin than have had bad experiences. My feeling is that Avastin is like every other drug for brain cancer....it works for some people, and it doesn't work and even harms other people. But I'm just a mom who lost her son, not a doctor or an expert or anything, so I don't really know what my opinion is worth.

If we were to do it over, I would still have tried Avastin. We were desperate and didn't have any other viable options.

Love, blessings, and healing to you,
Cindy in Salem, OR

cindysuetoyou said:

check this out
This guy's story inspired me:

http://www.livingwithbraincancer.net/p/without-prayer.html

It's always a huge positive when they can remove any amount of tumor. The more they remove, the better.

Hold on hard to hope, fight hard, love a lot. And please post updates on how you are doing. I LOVE hearing how people are beating cancer.

Love and blessings,
Cindy in Salem, OR

gbm

Hi, my name is Tony Henkel, I live in Oregon City, Oegon. Last August my life changed, gbm 4. I had surgery with great removal, had

radition for 6 weeks finished in nov 7, 2012 and still on timidor. 5 days on and 3 weeks off. Doing ok. The emotoinal  rolloercoaster is the hard part of this. I had my most recent MRI and the tumor is not coming back.  

Uncle_Ted said:

My Stage 4 Glioblastoma Multiform experiences and treatments
My Stage 4 Glioblastoma Multiform experiences and treatments and results so far.

This may seem long since it is an accumulation of much web searching and condensing known facts into 1 document. I sincerely hope it helps someone or everyone to know this diagnosis is not necessarily a death sentence. After my first 4 treatments the Oncologist said that on a scale of 1 to 10, my condition was then a 6. After a month, I asked him the same question and he said it was now a 4. I’ll ask him again when we meet on December 18th 2012 where it ranks. I think that has been pretty fast work considering on what it is.


2 MRI’s ago, the Oncologist said a large area of the mass looked like Swiss cheese which was a good sign. My MRI last week showed that whole area gone and no tumor anywhere with the spot fully healed. The third spot shows the tumor has shrank substantially and he is very optimistic. He is now changing my treatment to AVASTIN. My main concern there is the possible side effects. I’ll discuss this with him when we meet on the 18th of December, 2012 along with what other things will be done.

Before I go on, let me say that I am a Christian; all of my friends and family are Christians and Jews of some denomination or other and of different races and they all have me in their prayers. I have been a prayer person all my life and am a witness to how important this really is. Big burley guys are decent too!!! Now, I’m not perfect and will have a lot of explaining to do when I do go to heaven but, right now, that seems to be in the distant future. I’m not afraid to die since we all have that to look forward to. Like the song says, “everyone wants to go to heaven but no one wants to go today’ !!! If this doesn’t get me, something along the way eventually will. So what I’m saying is: plenty of prayer from you, friends and family is what really works, the rest is what God has enabled the surgeons and doctors to do to help us. Having a caring and loving spouse is next to Godliness. My Oncologist gives me a huge hug every time he sses me. The surgeon says “God bless you” after every visit. They are all 3 in their 40’s.

Profile:
…Turned 63 (white male) in January, 2012…..Was diagnosed in March 2012
…Very positive person although I face reality head on. I love telling jokes and have one or more for every occasion.
…Was single (divorced) with 1 son since age 32. Dated and finally decided to marry a wonderful woman whom I dated for years, we didn’t want to just jump into anything I guess. We both joked that we only wanted to split our stuff once (first marriages) Got remarried in March 2012, days before our well planned wedding day, I was diagnosed. We figured why let this nasty thing stop something we had planned for a long time. I told her it isn’t a customary wedding gift but it comes with the package.
…Have been healthy all my life, not having more than an occasional head cold through the years. I worked for a company for 35 years with no sick time taken (didn’t need it). One of my bosses said “ya gotta be sick to have that kind of perfect attendance”
…Am 6’0” and over the years weight has stayed between 195 and 225 pounds. Currently 212 pounds.
…Have always exercised although not rigorously. Exercise training came from high school football team and Army training (infantry) along with some specialized training all of which were mostly lots of running and push-ups. In my 20’s through my 50’s, did some daily jogging, hiking and bicycling. My career job was as an IT professional so, I made it a point to take walks around the building every hour or more. I love the feel and comfort using a wood stove gives so I am constantly cutting, splitting and stacking firewood. I am very active physically and mentally.
…I always took supplements via multivitamins along with eating all the foods recommended to be good for you. Yes, I did eat some junk, anything with chocolate and peanuts or peanut butter!!! I love pizza, steaks, seafood and shell fish too!!! I was never much on fast food although at times, yep, I ate the salt burgers.
…I have no plaque build up and have always had perfect blood pressure readings. My new wife always kids me about the report the doctor gave me when I was aged 60 and had a nuclear stress test done….the veins of a 16 year old. At first I was proud but then I realized with all the junk food kids eat today, that may not be so good!!!

Well guess what??? With all of that said, I was diagnosed with Stage 4 Multiform Glioblastoma. Needless to say, I was the last person friends and family expected to hear a diagnosis like that.

Symptoms I had
I would get a twitching in my thumb that would last a minute or so, causing the thumb to move back and forth. I’ve since learned this was called a “focal seizure”. Sometimes, my right temple would pulse. On my right hand, my little finger and the finger next to it became somewhat weaker and caused me to drop things. I went to my doctor and his prognosis was tendonitis. Well, I kept getting those twitches so a few days later, I went to a place called “Doctors Express” which my insurance company recommends one go to before going to the hospital. My blood pressure was 200+/151. I went to the emergency room and it took them hours to get the blood pressure down but couldn’t get it even close to an acceptable levels. They did an MRI and found the mass on the left side of brain. It was in an area that controlled the hand and wrist and was about the size of a walnut.

Options offered me
I met with a Neurosurgeon…Doctor Neal Naff who works out of the hospital I went to…St. Josephs’ Medical Center here in Maryland. He also has offices at nearby Johns Hopkins and Merci hospitals. He said that if I did nothing, I would go into a coma in 2 months and then die. He could operate and remove that part of the brain but that would leave me as an invalid the rest of my life, paralyzed on the right side. He said he would need a biopsy and send it to various Cancer Centers around the country to appraise what course of action should be taken. So, by the following week of having been diagnosed, he operated and took a biopsy (small fragment to be analyzed). It came back as malignant and that with Temodar and radiation would be compatible with my body. He said that he could only say that this would give me at least14 months at most to live. He immediately set me up with 2 of his associates…Doctor Citron for radiology and Doctor Gafar for Oncology. After some research, I found all 3 of these doctors to be “first in class”. All 3 agreed that over the past 10 years, this method I’m about to explain will give 14 months of life and then “more innovative methods” would be employed. After taking the biopsy, my right hand was almost useless. Dr. Naff said it takes a while for the brain to either repair itself or reroute commands. The hand gets better each week and I’m back to splitting and stacking wood, cutting the lawn, driving the car, etc.

Treatments

1---Radiation
5 weekdays for 25 sessions. I had a full head of hair but where the radiation was given and where the hair was removed to do the biopsy, it was bald so my wife shaves my whole head with clippers. All the hair is now growing back but my younger family members think it looks cool from the scar up the side of my shaved head. Someone mentioned a tattoo but that’s just not me.
2---Temodar 42 times in conjunction with the radiation then take a break for a month and then 5 days on Temodar and off for 23 days and then again for 5 days then off 23 days and so on for 6 months. I took the Temodar at 11 pm each night. A half hour before taking it, I took an anti-nausea pill. I never had nausea or anything else from that treatment. There were times I would take a nap after lunch because I felt a little tired but, I would always get up and go outside and do something, even if it was wrong!!! Sometimes I would get winded and would sit down for 5 minutes or so and then get back out there!
3---Stool softeners---Geeeezz, I would take 1 after every meal and 2 before bedtime. My first bout with using Temodar taught me that very quick. It was like I would imagine giving childbirth to a 10 pound baby through that area. As they say, it doesn’t make you go, it just makes it easier.
4---Sulfa drug. As explained to me, it removes fluids from the treated area and prevents possible infections in any scar tissue.
5---Steroids to help shrink the tumor making it easier to be more potent to fight the tumor.

What has been working for me

I researched every cancer fighting information article and white paper I could find and found some very useful stuff. I also found very many people who exploit the fear and anxiety of people who have cancer and will try to suck your bank account dry. I feel this way, if they are charging for it, forget it!!!!! I will outline below exactly what I found out..free. When I first mentioned these to my Oncologist, the first words out of his mouth were “I see success here”. I told the doctor I’m depending on him but I surely want him to have a good specimen to work with.

1---Alkalinity (non-acid environment)
Cancer cannot survive in an alkaline environment, cancer cells will die!! You want your PH to be neutral. I have a well system and the PH of the water is 6.5, very slightly acidic. A PH of 7.0 is neutral. Using small amounts of common baking soda until a gallon of water reached a PH of 8.0 is what I use for drinking and cooking, drink 8, 8 ounce glasses a day. It’s ok to squirt a little product called Mio into it for flavor. I find it at Wal-Mart in the juice aisle. It doesn’t change the PH so much but does add to the taste bud variety. Too much alkalinity causes it’s own problems with health and the taste of things. I wouldn’t go over 9.0. Only eat foods that are non-acidic. There are some foods that are acidic when eaten but are alkaline forming when digested, these are ok. Munchies should be green vegetables, throughout the day. I personally just eat 3 meals a day with no red meat whatsoever. Chicken, fish, turkey are good examples of meat than can be eaten. There are good resources on the web with outlines of acidic/non-acidic foods.

2---No sugar
We buy no products with sugar added. When you read the contents of an item, make certain you use a product with no sugar added!!!! Sugar once processed through the body goes to the brain as glucose just as anything else you consume. However, processed sugar gets processed differently. At the site of the tumor, processed sugars become ethanol which tumors feed on…..no sugar…there went my M&Ms and Reese cups.

3---Oxygen
Cancer cannot live in a high oxygen environment, period. Oxygen kills cancer quickly. Too much oxygen has it’s own issues with ones health so don’t go grabbing an oxygen bottle. Try to keep your oxygen level between 95 and 98 percent. You can buy one of those things you put on the end of your finger that give you an oxygen level of your blood, at any drug store or Wal-Mart. The best way to keep oxygen levels within that range is exercise. Something as simple as taking a walk lasts for hours keeping oxygen levels within this range.

4---DO NOT consume products as known ANTI-OXIDANTS.
Oxygen kills cancer, anti-oxidants counter-act that measure.

5---Turmeric
Turmeric is a common spice that can be bought from the spice aisle in any grocery store anywhere. It shrinks tumors and supposedly can pass the blood/brain barrier. I think Cumin is the same thing but just another name for Turmeric. It’s great on sweet potatoes, regular potatoes, salads, etc. It is also a blood thinner so if you do as I do, put it on everything, you’ll bruise easily. I can deal with the bruises, I wanted this nasty thing in my head gone!! The combination of prayer, conventional treatment and supplemental vitamin treatment has worked great for me.

6---I take 3 vitamins I found to be of use. Odorless Garlic Tablets 2000 mg. The smell in garlic is from sulfur. I figure the sulfur would augment the sulfur drug and the Oncologist said he had no problem with me taking it. Vitamin D3 400 iu D3 is very important for the immune system. Don’t stay with plain old vitamin D, use vitamin D3. Vitamin B-12 500 mcg,2 times a day. I take the second one 10 minutes after the first. Use the sub-lingual ones that melt under you tongue. This is a vitamin that gives you energy!!!! Regular B-12 pills don’t absorb into the body from the stomach as well.

I’ll keep you posted here. If too many object, we’ll go the email route.

Dr. Neal Naff

Hi Uncle Ted,

 

Dr. Neal Naff is by far the most knowlegeable and educated doctor that I know of.  I'm so glad you were under his care.  He is not only a genius, but a genuine person.

Thank you so much for the information.  My husband is in 11 month of GBM and we have had our ups and downs.  What a dreaded disease.  My husbands is inoperable as it is above/at the ventricle.

Thank goodness!

God bless you!