glioblastoma level 4 brain tumor survivors

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.

Thanks for such a detailed post to include CAM strategy. I am taking B-95 Curcumin. Supossedly, it is microground and so more of it get past the blood brain barrier. This is a recent switch. I was putting tumeric in 800 mg. capsules and taking 4 a day. Now it is 2 a day of 500mg. capsules of the B-95.

Interestingly, Vitamin D3 is the only thing right now that I take in AM meds and PM meds.

amsan1724 said:

GBM Survivors
Jerry Kline was diagnosed almost 9 years ago. He is doing incredibly well. Go to jerrykline.com to read his story. He also wrote a book "An Unremarkable Man". He is an inspiration and a miracle. Best of luck to you. I am so very sorry to hear about your son-in-law. God bless you all.

Thank you amsan1724 !!!  jerrykline.com <-- checking this out now. Very inspirational.

Messinias

kev05 said:

Glioblastoma Multiforme grade 4

Hi all...I have recently just found out one of my family members have been diagnosed with the aforementioned cancer. I am looking for some positive battles against this to keep my family members sprits high but at the min i'm finding very depressing stories. Please could you email me any success stories/battles you have had just so I can stir a bit of fight into the family member. My email address is kevinclarke05@gmail.com. I really really would appreciate any positive stories any of you have (no matter how small or insignificant you may think it is) as my family member is very down at the moment. Thanks.

http://gregsmission.org/

You can even call him.  He is very strong, prompt, and inspirational.

He is at least 8 years out and with the will of God, going well.

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.

Hello Uncle Ted!

Uncle Ted- your message of December 7th was very inspirational for me.  My beautiful husband, Kevin, had biopsy and resection on Jan. 4th which resulted in a Jan. 15th diagnosis of AA III, likely evolving into a GBS.  Your story and his story are similar on many counts.  He'd never been sick, never used a sick day- nothing like that.  He doesn't do traditional exercise, but plays competitive tennis regularly.  He turned 65 on January 28th, 2013.  Sounds like you have now turned 64 in January, 2013.
Kevin has a wonderful sense of humor- very positive, likes to joke.

He hasn't connected with anyone yet who has a similar diagnosis.  He doesn't really use the computer much.  I'm glad he doesn't 'research' brain tumor-  some of the online stuff surely does scare a person.

Anyways- I'm going to print-out your post and take it home to him.  It will be good for him just to read about someone else's experiences.  By the way, I found myself wondering about your Scale of 1 to 10, which is the good value and which is the lesser value.

Prayers and well-wishes, Uncle Ted.  We also firmly believe in prayer and Vitamin F (family and friends).

Thank-you!
Ruth (Kevin's wife)

kev05 said:

your story

Uncle_Ted I am inspired and very interested in your methods of fighting this terrible disease. Is there any side effect to taking tumeric with chemo and radiotherapy? A family member of mine has very recently been diagnosed with a GBM grade 4 and I'm searching everywhere to get the best solution. Something that works along with chemo and radio. Did you have surgery? How are you now? Great i hope. If you would prefer to email me I would be very interested to hear from you. kevinclarke05@gmail.com

 

Regards,

Kev

There is no evidence that curcumin / tumeric negatively interact with Temodar. I started curcumin after I had radiotherapy. 

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.

Dear Uncle_Ted,

My husband was diagnosed with GBM grade IV on May 18th, 2010. Like you, he was very healthy, very active, ate a very good diet and didn't smoke or drink. He started having headaches almost every night, but Advil took care of them. I told him to go to the doctor and be checked because we lost a daughter to a brain aneursym and I was terrified he had one getting ready to bleed. The doctor said it was only tension headaches, but about a week later, he had a very severe one and was having problems trying to text me. His text message trying to explain the severity of the headache was nonsense, so I called him and asked what was going on. When he told me, I went and picked him up from a training he was attending and took him to the hospital.

They did a CT scan and said that yes, it was a bleed, but from a tumor and not an aneursym. We were shocked, and even more so when we learned that it was the size of a small lemon and had caused a midline shift of his left brain into the right side of his brain. He had surgery where they removed 90% of the cancer, he then had 6 weeks of radiation and one full year of Temodar (28 day cycles). He had bilateral strength, good balance and the only side effects that he noticed was a loss of periphrial vision on the right side of both eyes and even though he was still able to read, it was a little more difficult.

During that time, he had a very good quality of life. He did almost all of his original activities and did a lot to help around the house. We were also able to travel a little, which he enjoyed. He remained cancer free until Aug. 2012 (a total of 26 months), and then had 2 very small "beads" of cancer show up in an MRI in the old tumor cavity. He then started Avastin and Irenotecan. He wasn't able to tolerate the Irenotecan (suffered severe diahhrea and bleeding), so after 3 months and a clear MRI, they changed to just Avastin. With his next MRI in Jan 2013, it showed enough regrowth in the original tumor cavity where the doctors decided to operate again. They were able to remove 90-95% of the regrowth. He is now taking a combination of 3 chemo drugs: Lomustine, Vincristine, and Procarbazine. He is tolerating the new chemo quite well with only fatigue as a side effect. He will have another MRI on Monday, April 15th, so we'll see how it's working then. 

He is having more problems this time after surgery, than the first. His tumor is on the left side of the head, so it has now affected the coordination of his right side. He sometimes has difficulty finding the words to express what he's thinking, even though his thinking is still clear. We uses a walker around the house, but wears out easily (I'm sure it's from the Chemo), so he uses a wheel chair when we go out.

The main reason I was writing, was to see how you're doing. Did you start the Avastin? If so, do you think it has helped? Since I haven't seen an update, I  thought I would ask. 

Hoping all is well with you and that you're doing great!

Jean

Shelley76521 said:

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.

Hi Shelley,

They put my dad on Avastin and he was on it for a few months and then all of a sudden his tumor doubled and now the third tumor that developed is pushing on the part of the brain that controls his memory and speech.  My dad is 55 and I am 38 weeks pregnant.  I am so sorry to hear you lost your husband to this horrible disease.  We are not a fan of my dad's doctors and do not feel they are being 100% truthful with us.  They did give him the wrong chemo one time and they actually admitted that, but if they did it once, who's to say how many other times it has been done.

Jaxees said:

survivors-
I am looking for survivors also. So far auto litt seems like the most cutting edge technology that I ahve found, otherwise it's natural ways, like detoxing and cleansing. So sorry... I do hope that you find survivor stories. I know there was some link to a guy name jerry going around.

Check on line for ways to help them by looking into juicing for cancer cures etc... Good luck.