Hi
I just found your site on the web. I've made a web site as well about my
husbands battle with GBM IV. We have taken a holistic route in dealing
with it. My husband is 38 now and doing well. His 9 month mri was
free of cancer. Our site is www.flaxoflife.com -
Kelly
Here is our story -
On February 10th 2002 I brought my husband to the Emergency room with a splitting headache and projectile vomiting. We thought it was a bad migraine but later found out that it was a brain tumor. On February 12th he had surgery and the surgeon told us and the lab work later confirmed that he had a Glioblastoma Multiforme IV. It is the most deadly and fast moving brain tumor you can have. The surgeon removed all of the tumor he could see. The doctor told our family that Tom had about 26 weeks to live if he didn?t take any radiation and if he did take radiation it might give him a year. My husband was 37 years old at the time he was diagnosed. We were not sure what to do so we took the doctor's referral and went to radiation about a week after he got out of the hospital. Tom only took five days of radiation and it made him feel terrible, and sapped all of his energy.
We are Christians and knew that we needed to seek the Lord's guidance in this crisis. So we went to our Church and had Tom anointed with oil and hands laid on in prayer by the elders of the Church (James 5:14). After that some friends came forward and told us of some alternative ways people were fighting and winning the battle against cancer. Since the doctors did not hold out any hope we decided to throw our lot in with the holistic treatments and did not take anymore radiation. We started the holistic regimen in March.
Tom's three month MRI looked good, his brain was clean and the hole where they removed the tumor was empty except for a tiny line around a portion of the inside of the hole. The doctor said that it could be scar tissue, a benign bit of tumor or a regrowth of the Glioblastoma. At the six month MRI his brain was completely clean. There was no cancer at all. The doctor said that it was a miracle. In 14 years of practice he had not seen anything like it. This is what we did:
Take 1/4 cup Low Fat Cottage Cheese and mix it with 1 tablespoon Flaxseed oil and eat it twice a day.
Take Three 750 mg Shark Cartilage capsules three times a day
Take a Borage Oil and CoQ10 supplement
Drink plenty of water
Try to get light exercise, walking is best
Get some sunlight
For the first three months I also rubbed Frankincense on his head because it is supposed to have anti-tumor properties.
I searched on the Internet to see if there were other people having success with the flaxseed oil and cottage cheese. Go to www.beckwithfamily.com for some good testimonies and links. If you go to www.yahoo.com and go to groups there are a couple of groups, FLAXSEEDOIL and FLAXSEEDOIL2, and there is a good exchange of information there. I found other sites like www.curezone.com where people were having success beating their cancer through holistic means. Another good sight is www.shirleys-wellness-cafe.com After doing more research and talking to more people we added some things to our regimen after the first three-month MRI.
Graviola 5 drops 3 times a day
The AIM Garden Trio (BarleyLife, Carrots, Beets)
He started using an extract of a Brazilian fruit plant called Graviola (5 drops three times a day). We also added the AIM Garden Trio twice a day to build up Tom's health. Our whole family tries to take at least one AIM Garden Trio a day now.
Tom did not go vegetarian, but we did cut back on meat and sugar. We follow the biblical eating laws and do not eat any pork or unclean fish. It makes it harder for your body to fight cancer if you put unclean and artificial things into it. We think artificial sweetener caused Tom's cancer. He used to drink at least 2 liters a day of diet soda. Go to www.dorway.com for more info.
Please feel free to call Tom or I if you have any questions at all.
Tom and Kelly Rolland 985-223-1328 or Email kellyrolland@hotmail.com or Kelly@flaxoflife.com Tcrolland@hotmail.com
We just got Tom's 9 month MRI info at the beginning of December 2002. He is all clear no sign of cancer. He is back to work and back to normal. Praise the Lord Jesus!
Here is the info if you need to order any of the things that I've mentioned in my note.
Swanson Health Products 1-800-437-4148 or go to swansonvitamins.com I order the flaxseed oil, shark cartilage, CoQ10 and Borage Oil from them because they have the best prices I've found. You can find these things at a health food store too.
I ordered my Frankincense from Young Living essential oils, they are therapeutic grade oils, not perfume. Call 1-800-371-2928 and use customer #535072 to become a member
Aim Products Garden Trio
Call 1-800-456-2462 and use member ID 579373 to join. You will get wholesale
prices with a membership. If you are not able to order the Garden Trio (Carrots,
Beets, and Barley) I would suggest at least getting the BarleyLife. You can
get these in a powder or caplets.
I get my Graviola from M7 or you can do a search for graviola on the Internet and you can buy it in capsule form.
Two Good Books:
FLAX OIL As a True Aid Against Arthritis, Heart Infarction, Cancer and
Other Diseases, by Dr. Johanna Budwig and her Oil Protein Cookbook
(I ordered mine from Amazon.com)
I woke up October 6, 2003 and I was talking with my roommate when he noticed that the left side of my face wasn’t moving when I would talk. So, I went to the campus clinic. The doctor immediately sent me over to the ER where they performed a CT and found the mass/tumor. Then my roommate drove me 5 hours home in the middle of the night. I was 24 years old – active, healthy, and having the time of my life in college.
Once home I had my first craniotomy October 17 to remove the tumor. The surgery went well. The initial biopsy during the surgery came back as benign. So it was all smiles. But, when I went for the follow-up they told me that the initial biopsy was wrong and that it was in fact a GBM grade IV. At this point they referred me down to Duke.
Once at Duke I underwent another surgery and MAB treatment. I was down there for about six weeks in all for both. During this time my amazing girlfriend (now wife Karen) came down as much as she could while still attending classes. After Duke I went back home went through six weeks of radiation treatment. Once radiation was done I started Chemo therapy: Temodar, then CCNU, then CPT11. I have been doing various regiments of chemo almost continuously for the past 2 years. I am getting ready to start daily low dose temodar and avastin treatments.
I married my love on June 25, 2005. Every thing was going excellent. No real changes but then in September 2006. I began to lose use of my left hand and arm. It was a sudden decline. Then just this summer 2006 my left leg became weak. It has become a challenge to do every day things but I keep on going mainly in part to my amazing wife. I am just over three years since my diagnosis. During this time I finished my masters degree, gotten married and started a great job. Even though things are tough we keep fighting this disease – I will NOT settle for simply prolonging my life – I will be cured.
Thank you.
Steven Ryan
Hi,
I was diagnosed with a brain tumor after having a grand mal seizure on
March 27, 2006. My girlfriend and mom took me to the emergency room
that Sunday because I had never had a seizure before. When I went to
the ER the doctor said that it was probably sleep deprivation because
I had been up all night studying for a history test and also worked
a full time job. They did a CAT scan to be sure, and before I knew
it they wheeled in an IV of Dilantin, seizure medication. They said
they had found a mass in my right frontal lobe about 1-2cm in diameter
and a neurologist would see me shortly. I was admitted into the hospital,
and after an MRI and MRA they found the tumor was almost 4cm in diameter,
and they ruled out all possibilities of it being an infection. They
also said that it was calcified so they thought it was a low grade
oligodendroglioma. I left the hospital because I wanted to meet with
one of the best neurosurgeons in my area, who also mentored all the
neurosurgeons I had seen in the hospital. I saw him approximately a
week later and he verified the same prognosis. Surgery was scheduled
for April 14th. (Easter Weekend) I had the surgery and the surgeon
was happy to say that he got almost all of it out, about 99%. He said
that he was going to send the tumor to MD Anderson Cancer Hospital,
Houston TX for biopsy. We waited two weeks for results, much longer
than anticipated! The biopsy came back as an aggressive astrocytoma
stage 4 or GBM. I was referred to MD Anderson and as of right now I
am undergoing radiation (currently in 4th week of six) and chemotherapy-
Temodar. I am doing a clinical trial, which means that I will have
a break from the two therapies when radiation is done and then a month
later I will carry on with the Temodar for a year.
I was very pleased to come across this website because I have only met old people with my condition, and the prognosis seems to be only one to two years; however, my doctor is confident that with my health and age (24) I will see way passed that. Our faith is in Gods hands!!!
Please feel free to contact me. Phone number 281 960 6924 or email me Courtshepp@houston.rr.com
I have been visiting this site without posting for about 6 months now. Now my story is so stale, I will attempt to make it brief. Before I do, I will thank you for giving people this outlet and this hope. My husband and I were in terrible disstress when we recieved my diagnosis almost a year ago.
As of June of 2004 alot was changing: I was 22, had graduated college,
and watched my brand new husband get on a bus to Iraq. In effect, I moved
cities to stay with family as I sent out law school applications and took
a few courses.
I went to the doctor mostly for a ladies check up but I also wanted to
ask about my right foot missing the pedal on my car and I these odd "boo-booming"
feelings in my head. Everyone, including the doc who took some blood and
did some reflex tests, said I was fine maybe just stressed.
I got, what they still are tentative to call, seizures and migrianes that
had me crying in bed at night so next they gave me imitrex. 2 days later
I got a cat scan, and I had "a mass" 6 cm, pushing my midline
over nearly a good inch I think.
After checking me in at Sutter Memorial in sacramento, CA, they said after
the MRI that they would call my husband home from Faloojah and I got the
best drugs they had on tap until I got into surgery. I was surprisingly
at ease through the whole thing. I kind of didnt know what was going on,
nor did I make myself figure it out. They said they would perform a brainmapping
sensorimotor "thing" during the resection so as not to take
anything I really needed. I came to and the panic cooled (I can remember
thinking my brain mapping wires as I had pictured them were in the spin
cycle) was my surgeon leaning over my bed:
:"Good news--We got 95% of the cancer out"
And as I wheeled down the hall passed my parents, "I didn't know
I had cancer?"
Being a quick healer I was out of the hospital within 36 hrs after surgery.
With plans of law school on the back burner and my husband allowed to
care for me during the next 8 months, came the barrage of oncologists,
one for chemo, one for radiation. 1 week later I went in to have a staple
removed from the back of my head (oops!) and in Dr speak, that was uninteligible
until several exits up the frwy, that I was mis-diagnosed. (I was diagnosed
before?) TUrns out I had something not just cancerous, but incurable.
I didn't even remember (write down) the name until my next visit.
I was scheduled for 5 point radiation 5 days a week for 6 weeks, plus
2 forms of oral chemo: temodar, and a clinical study of tarceva through
UCSanFrancisco. tarceva removes the protein layer around tumor to allow
beams to get into tumor. After all it grew 10% in 3 weeks before treatment.
I completed radiation and chemo feb 2005. I got zoster after my second
100% tumor resection in feb as well after continuing my 5 days every 28
day chemo cycle.
I tried another month of follow up chemo and got a staff infection which
made my doc rec a bone flap resection (removal of cranial flap creating
"soft spot" at tumor site) to remove infection. I recieved a
picc line at home for 6 weeks recieving antibiotics, which in no time
had me on my feet! Yet by the time I finished in July or so, I decided
to forego continuing treatment since I had looked up and been told at
the start of treatment that it was only given in combo with radiation
to increase efficacy. Chemo alone has no bearing or proven benefit in
fighting a glio.
So now, I am 23, occasionally in the hospital for swelling/seizing, I
can sometimes but opt not to drive, and looking forward to a prosthetic
bone flap. I recieve treatments now at cedar sinai in beverly hills--
awesome place I hope my insurance doesnt change
My MRI have been "stable" since treatment began essentially,
but I told you all I have done. My last was a week ago, and has looked
the same since my 2nd resection in feb.
my active email is XiKiss6@yahoo.com
My name is Tim Smith you would know me as the tool man! I have been in a fight with my GBM grade 4 since September 10th 2004! When I was diagnosed the tumor was about the size of a golf ball and in a spot that was unremovable! At least this is what my local doctors told me. They even went as far as to say why get it removed it will only buy you a few months at the best. Well after hearing the % of survival I started to do my homework and sent my MRI’s to Duke Hospital where I heard the Michael Jordon of Brain surgery was! Dr. Al Freidman returned my call right away and after my radiation and temador was finished we made an appointment for a resection. On December 29th04 I traveled to Duke and had it done and it was a success. I have been in the care of Duke ever since. After a trail study of chemo a small 5mm spot turned up on a MRI and my chemo was changed right away. Recurring tumors is not uncommon along with your cancer becoming immune to the chemo regimen you might be on. I have faith in both my God and my doctors that
I will not become a statistic not a negative one at least. One thing I have noticed there is a community among cancer patients that will help you in anyway you may need. If anyone needs more info
email me at tool1@localnet.com
Tim Smith
6-2008
Hello survivors of GBM,
Here's my story. I am not young but I am not old either . I was = diagnosed at the age of 47.(March of 2006). I had never heard of GBM before that but I was familiar with astrocytomas which, from what I understand is now known as GBM. Anyway, I was working in the field of
Physical Therapy when I started experiencing the first symptoms. They began with a subtle feeling of muscle "fluttering" in my left shoulder. The next day I had subtle but noticeable weakness on the left side, arm and leg. I worked both my jobs that day but knew that something
neurological was happening. The next morning it was worse so I had my husband take me to the local emergency room. A wonderful Dr. there immediately did an MRI, contacted a neurologist in the hosp. who referred me to a Neuro-oncologist at Mass General Hosp. My appt was for
that Friday at 11:30. When I woke up Friday I was barely able to move so my husband carried me out to the car and took me to the local emergency room. The same Dr. saw me which was good because he was able to pass on how I looked on Tues as compared to Fri. I was taken by ambulance to MGH where I had another MRI plus CAT scans, x-rays, neuro exams, blood work etc. They asked a million questions re. past med. history and family history. If you don't know your family history do the best you can to find out. I was scheduled for surgery for removal of the "mass" the following Wed. Through all of this I remained upbeat one because there was no clear diagnosis yet and two because I as well as those around me needed that, especially my husband.
Once I was in recovery the Dr. came in and gave me the diagnosis along with a % of survivors (5%). A nurse came in right after the Dr. and said "don't listen to him he doesn't know what he's talking about". That's all I needed to hear. I remained upbeat most of the time through the 2 years I was treated. Meds will reek havoc on your mindset but try to remain positive. EVERYONE IS DIFFERENT. What has helped me the most was my faith in Jesus Christ. I had been a born again Christian since 1988 so my faith was well established but not well tested, till now. I prayed daily not just for myself but for those around me and for a gentleman in my church who was diagnosed with multiplemyloma the same week I was diagnosed. Remembering the needs of others helped me not to be so focused in on myself.
I spent the next 6 weeks in rehab regaining the use of my left side which was totally lost from the surgery and swelling that follows. My tumor was situated on top of the motor and sensory strips on the right side of my brain. About 85% was removed so I underwent 6 weeks of radiation and chemo for the rest. The first round of Temodar was not successful so I was given some time off to clear my system of that. During this "off" time I was able to travel to Paris Island to see my son graduate from Marine boot camp. Yes in the midst of all this my son went into the Marines. He signed up before my diagnosis and I thought it was the worst thing that had ever happened. I was more distraught with that than I was with my illness. Who knew if he would go to Iraq or not. Who knew if he would come home by bus or by coffin. Parents are not supposed to bury their children. Again I was before the Throne of God begging and pleading for my son. Well, my son has been stationed in Japan for the past 2 years and last mon. I was declared cancer free (for now). When I returned from NC I was started on a trial drug called ST1481 (gimatecan). This was a 12 mon. trial of which I did 10 mon. That's when the stroke hit. I was doing very well physically until July of 07 when I suffered a Brain bleed that was surgically repaired thru the left side of my head. I say this because typically you would see weakness on the right with a left sided stroke, I had increased weakness on the left, highly unusual. God's providence. I am right handed so if both sides were affected I wouldn't be able to be very productive. But now I am back to teaching Sunday school and I am able to do light house work and cook meals. I cannot return to my previous profession because of weakness and decreased balance but I thank God daily for what I can do. Fatigue is still a factor . It is getting better but it is very slow. Next mon. I will start decreasing my seizure meds which the Dr. says will help with the energy. I use a cane to walk outside of my home but other than that I don't use special equip. or braces and, most importantly, I can drive.
Stay positive, no one knows God's plan but him. Keep fighting, keep loving and don't lose hope. I would love to hear from you. Robin-a survivor
Hi,
On December 24th 2006, the nausea caused by my persistent headache had gotten to the point where I couldn't eat or drink anymore. The headache was bad enough that pain relievers no longer had any noticeable affect and the only relief I found was when I vomited. I threw-up all over my hometown Reno, Nevada. The headache was definitely a lot worse in the morning and decreased as the day progressed. I also had some strange vision effects where it was as if I had no depth perception. Anyway, I finally went to the hospital when I couldn't stomach anything anymore. After a couple hours of sitting around in the ER I went in for a CAT-scan. We waited a while longer and finally a nurse came and injected me with something to 'calm me down.' I should have known this was a bad sign. The doctor finally came in and told my Dad and I that there was a large mass in the right frontal lobe of my brain. I don't think he should have guessed here, but the doctor told us it was most likely very volatile.
Surgery was scheduled for Dec 26th 2006. The tumor was fully resected and the pathology revealed that it was a GBM. I was 22 at the time I was diagnosed. The tumor was encapsulated in a sac it had created and was roughly the size of a tennis ball. The surgeon basically just had to suck it out with a vacuum.
At this point my family started looking to the internet for information. Which turns out to suck for GBM info.... All the internet said was grim grim grim. We wanted to get a Doctor's opinion on whether or not we should consider freezing some of my sperm in case treatment left me sterile. So we went to a Doctor in Reno who said I shouldn't worry about the sperm because I probably won't live. At this point I decided I didn't like doctors and should probably go somewhere where the doctors know more what they are talking about.
I went to MD Anderson in Houston, TX for treatment which was Radiation and Temodar. I highly recommend MD Anderson, that place was so amazing. My treatment ended on March 16th, 2007. I was to remain on a maintenance cycle of 6-thioguanine, Temodar, Accutane for 1 year. This cycle, um....sucked. We made nearly monthly trips back to Houston to meet the amazing doctors there. My MRI's were remaining clear but my main doctor didn't like the way the scans looked. There WAS some flaring which he thought was most likely radiation inflamed tissue. He wanted to do another surgery to clean about 2-3cm around the tumor bed. The surgery was performed on August 14th and was a success. While I was in the hospital recovering my doctor came in and showed me an image from a post-op mri. He was worried it would upset me because there was so much black space where my brain was supposed to be.
4 months later I went back onto the operating table because of a subdural hematoma cause by a staph infection I got in the previous surgery. This was on Dec 14th 2007. They removed the 'infected bone-flap' from my skull and inserted a PICC line for antibiotics. So I had the PICC line for six weeks and the missing piece of skull for six MONTHS.
I got the "dent" repaired in July 16th 2008. They used a Medtronic Ti-Mesh custom cranial implant. The implant was shaped using a CAT-scan (very cool).
So I am 24 now on this the 16th of March 2009. Which is, by the way, the 2 year anniversary of my last day of radiation treatment, and life is good. I got married and everything is pretty much perfect. I am the most lucky unlucky person..
Thank you and good luck to you,
Owen
p.s. Statistics are NOT for you and me. They are for people who don't know anything and doctors. Everyone is their own statistic.
I'm a 39 month Glioblastoma Multiforme survivor, 50 years old now but 47 when the GBM surfaced. Allison and I have three kids ages 15 (high school), 18 (college), 21 (college). I work as a computer programmer for UPS. Here's a brief chronology of my war against brain cancer, with some feelings and thoughts mixed in.
October 19, 1999: I felt fine, never had any symptoms. While setting up the sound system in our church in a stressful situation (feedback, that terrible screeching noise), a blood vessel burst in my head. Felt like someone shoved an ice pick up the back of my head. I went home with a headache. The headache got worse, caused convulsive vomiting. This is when I started not saving memories, memories of the next few days are minimal.
October 20, 1999: Visited the family doctor who now says I was acting really bizzare, he sent me for a CAT scan, which revealed a brain hemmorhage. Allison took me to the local hospital's emergency room, they sent me by ambulance to University of Maryland General Hospital in Baltimore.
October 22, 1999: Dr. Lawrence Chin, Chief of Neuro-Oncology, opened the side of my head and scooped out the blood clot. Dr. Chin reported finding an abnormal growth in my brain. Angiogenisis triggered by the growing tumor had triggered a blood vessel to grow, that blood vessel had burst. At this point, the possibility of brain cancer never entered our heads. A week later, the pathology lab reported GBM. The prognosis was "don't expect to reach the normal lifespan, 72 years". Compared to other prognoses, this one seems positive.
This near death experience had a strong spiritual facet. I lay in bed in the dark, and thought "Jesus let the lame man walk, Jesus gave the blind men sight, Jesus brought Lazarus back from death, Jesus offers me eternal spiritual life. I have no excuse for fear." Sometimes when I'm down I repeat this in my mind.
More spritual stuff just after surgery. This thought came to me, I didn't make it up. "The hospital is God's healing hand, the doctors and nurses are his ministers, they are His healing hand." All of the hospital staff treated me with love and thoughtfulness.
October 28, 1999: Another brain surgery, this one to remove the tumor. Dr. Chin reported he may have left some tumor in my head, to avoid removing good brain tissue.
A doctor, not associated with the hospital, said "Mr Stiles, in my experience this cancer always kills." Allison and I were down for a few days before realizing we should ignore his words. We always have thoughts and words in our heads, I banish the bad words, replacing them with strong words. Here are my favorite words, paraphrasing Winston Churchill - "We will fight cancer. We will fight with surgery, with radiation therapy, and with chemotherapy. We will fight with our family and friends and their endless prayers. We will fight with God's healing power! We will never give up, never surrender, never give in." Who do you suppose is stronger, cancer or the Lord God Almighty, creator of heaven and earth?
Late November 1999 to early February 2000: Radiation therapy. I lost 16 pounds, but subsequently gained 35 pounds. Started working again fulltime in February - but with capacity diminished by fatigue and poor memory. Radiation was worse than chemotherapy. Hair on one side of my head is permanently fried off. The skin turned black with a radiation burn.
Late February 2000 to September 2000: Chemotherapy by IV. Every six weeks, I stayed in the hospital for four days, with two IVs in my arm for two chemo drugs: BCNU and Topotecan. Some of the room-mates and all the nurses had good attitudes and gave me strength. To quote Don, my first room-mate: "This chemo really works. I had tumors the size of baseballs on my liver, they just disappeared!"
September 2000 to September 2001: Temodar chemotherapy, pills taken at home, 5 days in a row, 4 weeks off. I was able to live a normal life through this period.
June 2000: Stopped taking Dilantin, an anti-seizure medicine. Had a seizure a month later, woke up in the emergency room, started taking Dilantin again. No seizures since then.
January 2003: Brain MRI shows nothing! That is, no change from the last MRI, no tumor growth.
Now I believe I'm cured, life has returned to normal. Sometimes we sing my favorite song in church: "I'm trading my sickness, I'm trading my pain, I'm laying them down for the joy in the Lord...".
Rich Stiles
February 6, 2003
My name is Christa Steyn, I am from South Africa.
During May 2007 our 20-year-old son, JC was diagnoses with bran cancer (Glioblastoma Multiform, Grade 4)
On 18 May 2007, JC underwent surgery at the Wilmedpark Hospital in Klerksdorp to remove the tumour. Due to the roots going into the brain the surgeons were able to remove only 60% of the tumour.
This extremely aggressive malignant tumour does not respond well to conventional cancer treatment and in many cases, death occurs within 6 month?s of diagnoses.
JC has already received chemo- and radiotherapy in an attempt to cure the cancer.
During mid August 2007, JC again experienced severe headaches and nausea. ON 20th August 2007 a MRI scan revealed reoccurrence of the tumour.
We were advised that aggressive chemotherapy (Themodal) seems to be the only option. Unfortunately, it will make JC very sick.
After much praying (nationwide we had churches, family and friend) all praying for GOD to intervene and show us the way to go. Protocols and new treatment options should over and over again that the Burzynski clinic in Houston, Texas is the best option for brain cancer patients.
Dr Burzynski has reported success I the treatment of glioblastoma multiform.
He uses a very new treatment, which is not yet available in South Africa and requires multiple injections of what are called ANTI-NEOPLASTONS.
Because the tumour was growing so quickly, we were racing against time. A person was willing to give us some money in advance.
On 06 September 2007, my wife Christa and JC left for ouston, where he started with the treatment.
On the 04 October 2007, they arrived back in South Africa. The doctors involved with JC?s treatment are positive that he responded well to the treatment so far. Due to the following: no headaches and nausea, well co-ordinations and reflex action good bodily condition, no drastic weight loss and good organ functioning, established through blood tests taken every other day.
ON the 20 October 2007 JC started getting epileptics fits (5 fits after each other) He was admitted to hospital and on Monday they took a Scan and it revealed that the tumour did not show any growth since the last scan that was taken on 3 September 2007. Wonderful news.
I am attaching the report of the Radiologist. On Monday 29 October JC will go for a MRI that will be compared to the one that was taken on 20 August 2007.
JC is a former world champion powerlifter. He broke two world records at the World Championship that was held in Fort Wayne in September 2005. He gained about 40 pounds since he got ill.
He currently on Decadron 4mg a day and 2 different Valproic acid drugs 6650mg per day and the antineoplastons.
Hi,
I am a 44 year old mother of two young boys, 8 and 9, wife of a great
husband.
Last Nov. I awoke with an intense headache. It was relieved with Ibuprofen. That night (actually 4 am the next morning) it was back with a vengence-like someone drilling my head with a drill. More Ibuprofen. After that the headache retreated to a dull throb. I managed it for two weeks before I went to see my internist.
I have been a nurse for 23 years and my husband is a physician- we are the BEST at ignoring symptoms, and treating ourselves!
Long story short- I had a GBM. It was resected on November 25th. I had an incredible surgeon ( who also is our good friend ), who did a top notch job, removing 100% of the physical tumor. He implanted BCNU chips into the tumor bed, which delivered up to 100 times the chemotherapeutic dose of BCNU that I would have received if I had the chemo delivered IV.
After 6 weeks and 6,000 rads of radiation, plus taking Temodar, by mouth, I am doing great.
Right now I am just finishing up 4 weeks of no meds then I will start the monthly Temodar protocol.
My last MRI was clear and choline levels in the brain, done by spectroscopy, were within normal limits. All of you GBM survivors out there- don't forget to ask for spectroscopy when you have your MRIs done!
I am blessed that my tumor was not in a vital area, I have no deficits. I have acupuncture treatments twice a week, do Reiki twice a week and take handfuls of supplements I also visualize a lot!
I believe the most powerful weapon I have against this tumor is prayer and faith. I have a website that my husband set up for me. Through it I have literally thousands of people praying for me and my family.
The website is caringbridge.org/me/lauraullman
My husband, Joe, has posted all of my MRIs on there plus pictures of us. It has been a life saver because Joe frequently updates the news on it, keeping people current of my status.There is a message board there for friends and family to post encouraging messages. It has been a G-dsend.
I have read all of your stories and feel so heartened by you all, your gracious courage, your strength and will.
Keep up the good work.Feel free to email me.
Laura Ullman
My name is Andy Watson. I am 49. I live in Auburn, Maine.
Sept. 28, 2005 while at work I suffered a gran mal seizure. I was rushed to the Maine Medical Ctr. in Portland and had a golf size tumor removed from the left side of the brain, 5 hours later, I was in the recovery room.
My symptoms were massive headaches and memory loss. Before the seizure I was confused and could not speak in complete sentences.
On Oct. 20th I have an appointment to get a mri and then have my neurosurgeon to give me the what the treatment should be. While I am waiting, I am taking the homeopathic approach re: Ruta 6c and Cal Phos 3x. Dr. Prasanta Banerji from India claims he has treated thousands of brain tumors over a 30 year period with about 75% success!! A fellow at my support meeting is having success with it.
I was the most anti-homeopathic guy around, but seeing believing and nothing to lose, I am here. Will give progress soon. A report on the herbs by looking up on Google ruta+banerji+pdf. I also expect to get the chemo, radiation and Temodar . So I am the "old" kid on the block.
Any helpful hints, good jokes, prayers, questions or plain old chattin...just holla. God Bless you.
My email is andywatson88@hotmail.com. Lets beat the beast together! :)
In the summer of 1997, life was good. My wife, Krista, and I both had good paying jobs. We had graduated from the University of Wisconsin, Stevens Point in May of 1995 and were married in September of that year. We were ready to tackle the world and believed everything in our lives was in order. In July, I began to have recurring headaches that didn’t feel like a "normal" headache. Krista insisted that I make a doctor’s appointment. I scheduled an appointment with our family physician. Dr. Almonte scheduled an MRI that revealed a tumor the size of a tangerine within the left temporal lobe of my brain. I was immediately referred to the neurology department of the Marshfield Clinic, about 40 miles from where we live. The following day involved complete physical and mental tests to determine which functions could be affected during the surgery, which was scheduled early the following day. The evening before my surgery, my entire family was present to show their support.
On Friday, August 6th, 1997 both Krista’s and my family drove to the Marshfield Hospital where my surgery was scheduled for 8:00 a.m. There was a delay since an emergency patient had to be taken care of first. After the surgery, I was informed the entire tumor could not be removed without causing permanent and extensive damage. While I was in recovery, Dr. Neal, the surgeon met with my family. They were very frightened, but still hoping that it was non-malignant. He told them that a biopsy would be performed on the tumor and that I would need their complete support. On Monday, Dr. Choucair, the neuro-oncologist that tended to me, came into my room and told me that my tumor was diagnosed as glioblastoma multiforme and that I had a 3% chance of living 5 years. I couldn’t stop thinking of how it could be possible for a young, healthy person, like myself, could have such a horrible life-ending experience. My entire family was devastated.
Next came standard radiation for six weeks. To me radiation was not all that bad and did no more than make me lose my hair and make me very tired. So a long nap every day helped. At that time I was taking a steroid to decrease inflammation within my brain. This made me gain weight because it caused my body to retain water. At first I was taking 16 pills a day. After a few weeks I was to gradually reducing the amount I was taking. I had no problem reducing the dosage until I went from went from 2 pills to 1 pill a day. I had the worst pain I had ever experienced. My legs throbbed so bad that I wanted to go to the emergency room to stop the pain. My doctor informed me the next day that I should reduce at a slower pace: from 2 pills a day to 1-3/4 pills and so on. That made a difference.
After radiation came chemotherapy. My doctor gave me an opportunity to take an experimental drug called DFMO, so my wife and I decided to go with my doctor’s advise and signed into the trial. The drug was added to the chemo plan containing Procarbazine, CCNU and Vinchristine. While taking these drugs my diet was regulated. I wasn’t allowed to eat cheese (tough for a Wisconsinite) and MSG, which seemed to be in everything I wanted to eat. Things were going well, until one night in October, while I was watching TV and my wife was at work, I had my first and only grand mal seizure. When Krista came home, I told her what had happened. The next morning we made a doctor’s appointment. Dr. Chocair prescribed the first of four prescriptions to prevent seizures. The first three drugs caused intolerable reactions, including rashes, itchy eyes and excess saliva. The fourth was more manageable. My body never liked taking these drugs, so it took awhile to find one that my body would accept. Within that time I experienced three or four seizures. These were no more than a loss of speech for about five minutes. I found a prescription and a lower dosage that my body accepted. Since then, nearly five years ago, I haven’t experienced a seizure.
A few days after the grand mal seizure, Krista noticed some redness and swelling on my forehead and temple area. We pointed this out at a regular checkup we had scheduled on the following day. Immediately a CAT SCAN was ordered only to find that I had an infection on the exterior of my skull. I was sent to surgery immediately to remove about one-third of the scull on the left side of my head. This made life more difficult in that no more than the skin on my head protected my brain for the next year and a half. I was not able to go back to work because I had to carry an antibiotic IV for eight weeks until the infection was completely healed. When I was able to go back to work, I still had four sessions of chemo to go through. I had to be more careful around home and work and had to wear a hard hat until I had a plate installed in March of 1999 to duplicate the removed skull.
I am happy to say that my wife and I were able to have two beautiful children, a daughter now 2-1/2 years and a son one year old. The greatest problems that I live with are damage to my short-term memory, a loss of a quarter of my eyesight, and reduction in my reading ability.
As of my last MRI in December 2002, the tumor has not grown since my first operation 5-1/2 years ago. With a positive attitude and the support of my family and friends, I believe I have won!
Hi, I'm Jim Yanko, and am a GBM survivor. Initially diagnosed in Nov. 03. Surgery / resection / radiation / chemo. Was told I have 1 year to live. Well I'm still alive and kicking.
Aug of 04 recurrance and had Gamma Knife procedure done.
July of 05 MRI showed more tumor. Again had surgery a second time to remove. Qualified and was going to participate in a clinical trial. When the doctors were operating they sent 13 samples immediatley to the pathologist. All came back negative for GBM. From that point on I've been cancer free (8months.) I currently have MRI's done every 2 months and have all been clean since my August 05 surgery. Positve self-talk / prayer is what got me over the top.
sincerely,
Jim Yanko GBM survivor
