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glioblastoma level 4 brain tumor survivors

phillip1950
Posts: 4
Joined: Jul 2012

Hello Everyone, I'm interested in talking with anyone long term survivor of a glioblastoma level 4 brain tumor. My son-in-law was diagnosed in June of 2012 and had the operation and about 3 weeks ago completed his 6 weeks of radiation. Tomorrow we is going to have his M.R.I done and then speak with the doctor. I'm very worried and pray that will will here better news tomorrow. He is 37 yrs. old and they have 3 small children. This has been a very hard journey for all of us since June but it will be well worth it if we can hear something good tomorrow. Our lives as well as his have changed within minutes. I'm hoping someone can share some good news with me. God Bless All of You, Phil

Jaxees
Posts: 14
Joined: Sep 2012

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.

Jaxees
Posts: 14
Joined: Sep 2012

Brain Cancer & Wheatgrass
By an eHow Contributor

Wheatgrass often has the unfortunate association with health food nuts. But disregarding the health benefits of wheatgrass is shortsighted, since studies have shown time and again that wheatgrass plays an enormous role in enhancing one's health and well-being. Wheatgrass has been known to slow the advances of all types of cancer, including brain cancer. There are a number of reasons for this. Wheatgrass contains a wide variety of properties that have been known to fight and kill all types of cancer cells.

Read more: Brain Cancer & Wheatgrass | eHow.com http://www.ehow.com/about_5057457_brain-cancer-wheatgrass.html#ixzz26HXZit00

http://www.ehow.com/facts_5938480_glioblastoma-multiforme-stage-prognosis.html

Treatment

Doctors consider chemotherapy only marginally effective, although new treatments are developed all the time. Radiation after surgery appears to extend survival a few months, says Cancer Monthly.

Factors

Better outcomes are possible if surgery successfully removed most or all of the tumor. Age is also a factor, says Merck.com, as patients under 45 are more likely to survive.

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These 5 Symptoms Of Depression will Shock You. See the Causes Now!
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Survival

Glioblastoma generally has a very poor prognosis, with the average patient surviving just one year after diagnosis, according to the American Society of Clinical Oncology (ASCO).

Potential

While the diagnosis of glioblastoma multiforme is dismal, some patients do survive three or more years, says the ASCO, with research and newer methods of treatment providing hope for longer survival rates.

Newer Therapies

Due to the poor prognosis, patients should consider newer, investigational therapies when possible, suggests Merck Manuals, such as stereotactic radiosurgery, gene or immune therapy and new chemotherapy drugs.

Read more: Glioblastoma Multiforme Stage 4 Prognosis | eHow.com http://www.ehow.com/facts_5938480_glioblastoma-multiforme-stage-prognosis.html#ixzz26HXIHjEy

Read more: Glioblastoma Multiforme Stage 4 Prognosis | eHow.com http://www.ehow.com/facts_5938480_glioblastoma-multiforme-stage-prognosis.html#ixzz26HX1CZ23

beanor1
Posts: 9
Joined: Oct 2012

After reading your information, I became depressed....but I would like your opinion. I had surgery 11 days ago and the doctor removed 90 to 95% of my brain tumor - possibly 98% of it - he told me he removed most of it....I also was told my prognosis was very good and my surgery was also very good.

So I'm thinking I have a better chance of living because of the amount of removal of my brain tumor...is that right? My surgeon was amazed that the day after my surgery I was talking and thinking like normal again. I do not drink, smoke or do drugs. I am an avid runner and exerciser. I am getting my staples out tomorrow and can't wait!

Randy1958
Posts: 2
Joined: Oct 2012

You sound a lot like me ! I'm also 54, a non-smoker, non-drinker, non-user of controlled substances . . . I don't even drink coffee. Some people say I never have any fun.

I was diagnosed with GBM IV back in February. They successfully removed the tumor (about the size of a golf ball), then told me my life span would be measured in single digits. I had proton radiation for 33 days and initially Temodar (140 mg) for about the same length of time, then had a break for about a month, then started up again at 300; this went on through June, July and August. September and October were 400 mg. November is the same (right now I'm the middle of the five-day cycle). I finish out this month and then my condition will be monitored by MRIs every few months, unless something happens, always a possibility.

Don't you just love amazing the surgeons? I was out of bed and walking around the day after surgery. I had the surgery February 28th and went home Friday March 2nd. I've had MRIs since beginning treatment, one in late June, the next in late September. The first was good, the second one even better. In docspeak, the second disc revealed "no evidence of recurrence or residual neoplasm". The doctors went from telling me "when it comes back", to "if it comes back", which I find to be a major improvement. I can even go back to work, but I'm going to wait until I get my strength back . . . 400 mg chemo is rough.

I love your can-do attitude :) We are in it to win it!

japon
Posts: 9
Joined: Nov 2012

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

Uncle_Ted
Posts: 1
Joined: Dec 2012

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.

Shelley76521
Posts: 4
Joined: Dec 2012

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.

alexyj23's picture
alexyj23
Posts: 7
Joined: May 2012

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.

michral
Posts: 14
Joined: Jan 2003

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!

 

michral
Posts: 14
Joined: Jan 2003

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!

 

jcwinnie's picture
jcwinnie
Posts: 9
Joined: Dec 2012

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.

 

kev05
Posts: 2
Joined: Mar 2013

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

jcwinnie's picture
jcwinnie
Posts: 9
Joined: Dec 2012

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

Magillicutty
Posts: 2
Joined: Mar 2013

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)

jnunnall
Posts: 4
Joined: Oct 2011

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

Psjayne
Posts: 1
Joined: Apr 2013

Thank you for your posting. My brother is battling glioma 4. He got diagnoed in early feb and surgery immediately in feb. he had 6 leisons 2 operable and removed. He has just started his radiation and chemo 5 days on 2 days off And in his 2 nd week. We hope that each day brings all closer to a miracle drug cure. He's taking 300 mg split daily of chemo and zapped with radiation. In 6 weeks he should get his first MRI. We hope that the docs can give us some hopeful news. Not a smoker or drinker. He ignored his symptoms. Vision very blurred. It's difficult for him having been so active etc.

anyone have ideas for trials and diets?

 

 

beanor1
Posts: 9
Joined: Oct 2012

Hi....I had surgery 2 weeks ago....when I saw my surgeon this week to have my staples removed, he showed me the before surgery pictures and the after surgery pictures. He informed me that on average, most patients have a removal of their tumor that equals 78.1%. He informed me that I had 95% of my tumor removed!

I was also informed that my prognosis is good to very good. So I am thinking I have quite a few years to live! I am starting my chemo today and my radiation next week.

I am 54 years old...an avid jogger...I do not drink, smoke or take drugs. My surgeon gave me a performance rating of excellent.

So although I have read your posting and it has depressed me...I am thinking since so much of my tumor was removed I have a good chance of survival.

If you would like to comment on this, please do....I pray to God every minute of the day and right now, I feel better than I have in a while.

Thank you.

ColinBristow
Posts: 3
Joined: Jan 2013

Hi, I live in Zimbabwe.  Also used to run, didn't smoke, hardly drank and considered myself invincible!  I fly aeroplanes and have struggled with the reality of not doing this for some time. I was diagnosed last June after my wife found me in seizure.  The tumour was on the right side and I was operated on almost immediately.  I just finished my fifth cycle of temadol - 400 mg per five day cycle and am on cortisone.  I feel very weak and have some sensation loss on my left side as well as vision probs.  I think this is all to do with the chemo and post surgery swelling.  Hoping everything shall be normal again when I have had a break from swallowing all these pills!

 

How are you doing?  Would like to compare notes if you are willing?

DebiPT
Posts: 3
Joined: Oct 2012

Hi everyone. I was doing some research for my brother who was diagnosed with GBM grade 4. He was given 3-6 months to live. He was told surgery was too dangerous and chemo/radiation would only prolong his life by a few months if successful. My brother has opted to have no treatment and enjoy what he has left. I am having a hard time just "letting this go" without a fight but I know he is married (he is 58)and I should really butt out but...Anyway, does anyone know anything about autoLITT or thermal therapy? I know Cleveland Clinic and a hospital in St. Louis offer this but are there any others? Anyone know the success rate of this procedure and if it works on GBM type 4? I am trying to talk him into contacting Cleveland Clinic just to see if there are any other options. He has faith in his neurologist and feels like if he said there is no hope then there is no hope. I know there are many well-meaning but ill-informed doctors out there and just want to be sure all areas have been explored. Since most of you are going through this should I just butt out?

By the way, I have read many of your stories and I really pray for all of you. You are a true inspiration.

mtp6061
Posts: 2
Joined: Apr 2013

Hi my wife is a glioblastoma survivor. 6 years, 4 months and 18 days since diagnosis.   There is hope for long survival despite the statistics. Every individual case is different.  Just signed up here to spread hope to correspond with other survivors.  

helen svensson
Posts: 1
Joined: Oct 2012

I dont know if i am writing right.But my little brother is 26.the doctors told us this yesterday.were is the best doctors?we are from sweden

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

japon
Posts: 9
Joined: Nov 2012

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.

japon
Posts: 9
Joined: Nov 2012

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.

amsan1724
Posts: 7
Joined: Jul 2012

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.

beanor1
Posts: 9
Joined: Oct 2012

Thank you for the encouraging words. I had 90-98% of my brain tumor removed. I am also starting radiation and chemo and personally I feel that since a lot of my tumor was removed, my chances for living are better than those who could not have surgery. My oncologist said my prognosis was very good, that this was treatable, that very little of the tumor was left and that I can do very well and that my surgery was very good. These are his exact words.

My girlfriend works with a woman who had the exact same thing done over 5 years ago. So I am going to think and BELIEVE that I have quite some time left to live! :)

I will go to Jerry Kline's website...thank you!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

Tony061
Posts: 1
Joined: Jan 2013

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.  

messinias
Posts: 5
Joined: Mar 2013

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

 

Messinias

Scottgri
Posts: 44
Joined: Mar 2012

Their are options out there! I had a GBM and opted for a clinical trial at Duke university. My first docs told me I would be dead by January, it's now October and I'm back to work, living a normal life and tumor free!! 20 months and counting.

beanor1
Posts: 9
Joined: Oct 2012

May I ask you a question? Did you have your tumor removed or was that not an option?
Like I said earlier, my surgeon told me and showed me pictures...he removed 95% of my tumor. So I am praying that with the chemo and radiation the little bit of 5% will be killed and kicked out!

My oncologist told me (actually my sister-in-law wrote down his exact words) that my prognosis is very good, my surgery was good and that there was very little left of my tumor.

So I believe that with 6 weeks of chemo and radiation I can beat this 100%...that's what I plan on doing. I have always been a strong woman (I'm 54 years old)... nothing is impossible!

I'm kicking the tumor and devil out of my body and out of my life forever! It's just me and God and that's what I plan on for the rest of my life!

God bless you and thank you....it's only been 2 weeks since my surgery and it is hard to deal with when I do not know of anybody else who has had to deal with it. Thank you so much for just letting me talk!

gw6670
Posts: 1
Joined: Nov 2012

A close relative of mine was dx with GBM in September 2012. Temporal lobe tumor slightly smaller than a dime extending just into the cerebral cortex. They were able to remove all visible tumor. She does have problems with speech and comprehension when she is tired or stressed - which is to be expected considering tumor site. Recently, she has started chemo and radiation which will last for 6 weeks. So far, tolerating both very well except for some fatigue which has started in the second week of radiation. The thing that has given the most problem postop has been side effects of Decadron - insomnia, restlessness,hallucinations etc.

Of course, we have been given the stats. However, God is in control. We are believing God for complete healing and restoration!

beanor1
Posts: 9
Joined: Oct 2012

Hi! I had 95% of my tumor removed from the left side of my head on 10/17/12. I started radiation and chemo this past Monday, 11/12/12. Just completed my 1st week of 6 weeks. So far I am tolerating everything just great. The day after my surgery I was able to talk and remember things that I had forgotten for quite a while. The reason I went to the emergency room was because I had headaches all the time. My surgeon is the best doctor I know of! I thank God everyday that he was able to remove 95%. My surgeon informed me that the majority of people with brain tumors only have 78.1% removed. My oncologist is another amazing doctor. When I saw him he spoke so positive to me that I cried. He told me that my prognosis is very good, the surgery was very good, that there is very little tumor left in my head and that this is treatable. When I talked to the radiologist he told me the worst you could hear. So I do not take what he said as the truth. My surgeon and oncologist are who I believe along with GOD!

Right now I am not taking dexamethasone (the steroid) or Keppra (a seizure medication). I do take Temodar (chemo) along with Comprazine (for nausea) and an antibiotic (which I only take that 3 days a week). I have had no side effects from them - praise God! I also pray and speak to God every minute of the day - just about. When I'm receiving my radiation treatment, I honestly can see Jesus standing beside me with His hand on my shoulder. It is up to God but for some reason He makes me feel like He is not ready for me to go to His home. I think He has a lot of work left for me to do yet! Tell your cousin to keep a positive attitude - this helps with treatment and living longer! With God, nothing is impossible!!!!!!

japon
Posts: 9
Joined: Nov 2012

Thank u Jesus, God is Good ALL THE TIME.

japon
Posts: 9
Joined: Nov 2012

Thank u Jesus, God is Good ALL THE TIME.

japon
Posts: 9
Joined: Nov 2012

Thank u Jesus, u have given me great hope.
My husband just got diagnosis, its hard everyday i c the man i love change before my eyes he is doing everything Dr tell him but fights with me i understand, but just feel he is not working with me but against me.
Bell

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

HiScott:

My daughter had a reoccurrence.We are doing radiation again Avastin. Her new tumor is inoperable. Tell me about your trial? Also, was your tumor operable? Thanks and God Bless.

Edna and Sarah

Scottgri
Posts: 44
Joined: Mar 2012

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!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

Scottgri
Posts: 44
Joined: Mar 2012

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Scott:

I am very happy for you. I am glad it worked ! May God Bless you with many many years.

Edna and Sarah

Scottgri
Posts: 44
Joined: Mar 2012

I found the link to the trial I completed with success!

http://www.cancer.duke.edu/btc/modules/ClinicalTrials4/index.php?id=106

Shelley76521
Posts: 4
Joined: Dec 2012

Hello, I've been trying to find answers and comparisons on Avastin. My significant other Brent Marrowbone, passed away September 29th, 2012, after his Oncologist used Avastin in his chemotherapy treatment, given not 2 or 3 weeks apart, but days apart in 3 treatments. It caused his intact operable tumor to spread into several legions all over his brain. The Avastin has a dangerous side effect, and he was never informed of this. It can cause a bleed at the site of the tumor. Dr. Richard Tenglin, of Rapid City, SD, his oncologist just ordered the treatment, and after it was done, he announces that the tumor was gone at the sight of the tumor. Brent has been a survivor since 2007 by surgery alone. Tenglin was sullen and downcast, it's because there was a new sight of tumor at the back of his brain. Confused I had Brent consult with the neurosurgeon. His opinion was opposite of Tenglin, Dr. Wayne Wittenberg said the chemo was working, he showed us the MRI images. I looked at the images and remarked that it's like the tumor broke up and traveled to this new site. He said yes it does appear to have done that. That is why he died, it was spread all over his brain. The national brain tumor association states that radiation is to be used in adults first, then chemo. Avastin is the most dangerous in side effects. Maybe the doctor used too much too soon as well. I hope to hear how your daughter is doing. I am hoping that everything is better for her. I will pray for a miracle, I want to know there are people who had the proper procedures and have done well. I'm glad this sight is here so I can talk to others dealing with glioblastoma. Brent was 47.

jnunnall
Posts: 4
Joined: Oct 2011

Hi Scott,

I have a few questions for you. What was your treatment in the trial? Are you still cancer free? How old are you (I have been told that age also can affect outcome)?

My husband was give 6-12 months and is now in month 35.

Hoping to hear from you!

Jean

Fredrickb
Posts: 1
Joined: Dec 2012

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!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Fredrick:

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

Edna and Sarah

Shelley76521
Posts: 4
Joined: Dec 2012

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.

Shelley76521
Posts: 4
Joined: Dec 2012

Hello, my long term glioblastoma survivor Brent Marrowbone, survived since 2007 by surgery alone, was given Avastin in February of this year in 3 treatments of chemo every other day, regardless if the oncologist missused it or not remains unknown, it has a dangerous side effect of causing a bleed at the site of the tumor, and that is how it appeared to one doctor as working and his oncologist as not. It had broke up and spread the tumor all over his brain, he passed away at 47 years of age on September 29th, 2012, just 7 months after it's use. He was never warned verbally or in writing, thus given informed consent, before it was used. Tell others you know fighting cancer.

Scottgri
Posts: 44
Joined: Mar 2012

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.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

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