4-9-06
Hi everyone,
My name is Janet and I was born 8-9-78.
My journey with having a brain tumor began in 2000. At first I was misdiagnosed with Multiple Sclerosis. I knew something wasn’t right so I went for a 2nd,3rd and 4th opinion. Everything pointed to an inoperable glioma in my brainstem. I didn’t know what was better. Having MS or an inoperable brain tumor? That was only causing loss of my handwriting skills in my right hand at the time.
I got on with my life. Graduated college, got an entry-level job. In 2002, they (Sloan-Kettering) in NYC had had me on a wait and watch approach but in 2002 more symptoms started to show up like weakness, double vision and more of a hand tremor. The next step was 6 weeks of radiation. After 6 months I felt good and returned to work.
In 2004 symptoms came back and the next treatment was Temodar. I handled that well and even went back to work while still on it back in August 2005. I left work the end of February 2006 because symptoms were really bad. I had 15 rounds of Temodar but numerous tests showed my tumor had grown a little also in my cerebellum and my body became immune to the Temodar.
The next step was to take BCNU intravenously. They only gave me several options and I went with 1 treatment on March 9, 2006 because I felt I had no other choice. I had a weird feeling about taking it. They told me it grew but never into a GBM. A week later I went to see a top neurosurgeon at NYU just to get another opinion. I had seen him at a Brain Tumor Awareness Day event and was really impressed by him. To make a long story short, he didn’t understand how Sloan could possibly treat me when the last biopsy I had was in 2002 and he couldn’t believe they were treating me with chemo from 1976 that has only a 20 % success rate.
There are so many options now and tumors can change their cell form over time. 2 weeks ago I had a biopsy and the pathology report showed it got aggressive and is now a GBM grade 1V. I start a new treatment on April 26, 2006 . I have to wait a few weeks to get that 1 treatment of BCNU out of my system. It hasn’t been an easy journey especially being so young but I remain positive and refuse to give into this beast.
I am so glad I found this website! It is filled with positive energy and that is exactly what everyone going through this needs. Thank you! If anyone ever needs to talk, vent, etc..please e-mail me
Sincerely,
Janet Matrochano
My name is Stacey McDaniel, and my life was turned upside down on April 8, 2003, when I was just 28 years old. I will back up a little.
In the spring of 2002, I started having twitching in my feet, and weird pains on my right side. I went to the doctor, and he told me it was psychological, or stress related. Also, my migraine headaches, that I had ALL of my life disappeared. I had 4 kids, and had decided that we wanted a fifth. I got pregnant, and then delivered a stillborn baby boy in August of 2002. After that, I rethought my life, and decided what I really wanted was to go to school and become a doctor, so in September I started pre-med at Olivet college.
I was doing really well, even with four kids. I discovered I was pregnant again in November of 2003. I thought, no problem, I can still go to school. Then I had the ultrasound, it was twins! I was elated! Two months later, at 17 weeks pregnant, I lost one of them, but I pushed on, never missing class, and getting excellent grades. I started to feel "off" some days. On April 7, I had strange twitching in my eyebrow. I blew it off, but later learned that this was a focal seizure.
On April 8, 2003, I had my first of many grand mal seizures. I was standing in the kitchen, 27 weeks pregnant, and talking on the phone to my babysitter (it was about a half hour until I left to take final exams for the semester). My friend called an ambulance, and then came over. They thought it was eclampsia, which would only be cured by delivering the baby, and at 27 weeks, my little Saylor Caroline didn't stand much of a chance.
They decided to do an CT scan just to rule out other possibilities. That lead to an MRI, and that lead to a biopsy. On April 18, 2003 I was diagnosed with glioblastoma multiforme stage 4. I cried for about an hour, and then asked what my options were. I was basically told, this was it, go home and make arrangements for death. I wanted to see my baby take her first steps, and be born healthy.
I switched hospitals, and ended up going to University of Michigan. Dr. Sager, a neurosurgeon, removed an egg sized tumor in the speech area of my brain. It was a 7 hour awake craniotomy, while pregnant, on May 18. I delivered the baby on June 2, at 34 weeks. 6 weeks premature, but healthy and 5 pounds. She was in NICU for only 5 days. 2 days after delivery, I went to start radiation. I did 35 rounds of radiation, and then in August I started 12 months of Temodar. I had a set back in October, I developed an infection, but the doctors didn't know where. I had a fever of 106, and a seizure (my last one!), and went into a 3 day coma.
After I awoke, I was fine, and have been fine since. I finished off my chemo the same week that I started classes back up at Olivet! I am almost finished with my first semester back to school, finals are in December. Dr. Larry Junck is my neuro-oncologist, and I thank him, and Dr. Sager for my life.
I want to offer encouragement to anybody out there that is diagnosed with this dreadful disease.
my five children, Kelsey, Logan,
Bailey, Avery, and Saylor
My name is Jill McKown and my brother found your website and I am really happy he did. Since I did the same thing and looked on the internet and found all the negative info. 6 months to a year. I was devastated.
My story is just beginning. I'm going to start in January 2003. On 1/18/03, after 32 years of looking I was finally introduced to the perfect guy. On April 25, 2003 he proposed. We set the date for October 25, 2003 and went to Vegas. During the summer of 2003 we decided we wanted to build our dream home together and started looking for a place to build. We found what we both thought was perfect. We then started looking for the house design, also found what we wanted. Of course, the next step was when to start the family. Since by then I was 33, I didn't want to wait too long. We started trying in Jan 2004. It took 2 whole weeks. I was due October 5. We were thrilled. We set about building our home. We were just a few weeks from being able to move in by the end of August.
Then in the middle of the night on August 27, 2004. I woke up unable to roll over When I spoke to my husband and heard that my speech was slurred I knew something was not right. We headed to the ER. I had to drag my left leg behind me as I walked to the car. It did not want to move and my left hand took forever to do what wanted it to. I thought for sure I had had a stroke.
Once in the ER a CT scan was done. The ER doctor came back and told us there was nothing on the scan. No tumors or aneurysms. They were going to keep me over night and have a neurologist see me in the morning. We were so relived. The next morning the neurologist came to see me and said there was something on the CT scan but an MRI was needed to determine exactly what is was. Being pregnant this was risky, but we had no choice. The MRI showed a tumor. We were told it had all the characteristics of a meningenoma, a benign type of tumor. We were again relived to hear this news. Since this type of tumor is slow growing there was no hurry to have it removed and my stroke symptoms actually improved in a day. And I was sent home from the hospital.
I was to schedule a c-secition with my OB to avoid labor and see a neurosurgeon and be evaluated and scedule removal of the tumor for a few weeks after the c-sectrion. The c-section was scheduled for September 25. We moved into our new home over Labor Day weekend and started to prepare for a newborn.
On the morning of September 23 I woke up in excrusiatating pain. I was sure someone was trying to drive a railroad spike into my right temple. I told my husband to call 911. Once again we were in the ER. This time the films revealed my tumor had started to bleed. I needed to be transferred to a hospital in St Louis. We live in Illinois, but thanks to medical malpractice insurance, there are not any neurosurgeons left here. Even tough it is only about 30-45 minutes by car, they considered airlifting me to St Louis. It was decided to transport me by ambulance. However before the doctors could do anything for me they had to deliver the baby because of the tumor the c-section had to be performed with a general anesthetic.
Tristan was born at 6:51 pm on September 23. I was scheduled for brain surgery at 2:00 pm on September 24. Even when the surgeon saw the tumor he still thought it was a begign meningenoma. A preliminary test run in the OR came back negative for cancer. Again relief. Of course I was out of it and had no clue what was going on.
Two major surgeries and morphine for the pain. I had gotten to see my son for about five minutes before the brain surgery since there were a million tests they needed to run because all of this was being done as an emergency. We waited days for the pathology. In the mean time Tristan was in NICU with under developed lungs, which my family did not tell me. I just knew they would not let me see him. I was to be in ICU for 4-5 days. Instead I as there for 14 hours. The pathology finally came back. It was GBM IV in the right temporal lobe. All of the tumor was removed, but I would still need radiation and chemo to catch any stray cells. I spent a lot of time crying at the hospital. I had to beg to see my son most days. I finally had the husband and family I had waited so long for now I was going to be gone and not get to see my son grow up or grow old with my new husband.
We had not yet had a wedding anniversary. It felt as if God was playing games with me. Teasing me. Physically therapy wanted to send me to a rehab hospital as I was still having weakness on my left side and my concentration level was not 100%. I refused to go. On September 29 I was sent home. Tristan came home on October 4 with no residual effects on his lungs. I had my first radiation treatment on October 28. I will have 30 radiation treatments and at least a year of Temador, which I will start the first round as soon as it gets here in the mail. The insurance company has so kindly delayed this. Waiting is making me nervous. I want any stray cells killed before they start reproducing and forming another tumor. Oh yes, physically therapy came to the house for in home and said they will not be back. My strength is back and my speech is only off when I try to talk to fast, which is all the time. I am planning to try to be back at work at the beginning of January 2005, I carry the insurance for the family. I am told the Temador will not keep us from having more children.
Has any female out there had a baby after Temador? Our plan was to have a second next year, but if you have read all of this, you can tell nothing goes according to our plan. God apparently has other plans. I have also been taking Tahitian Noni juice. Is there anyone out there that has used this?
I would love to hear from anyone that has any thoughts for me this is all still so new. I try not to think about it too much most days. bluemoon1935@aol.com
Hello,
My name is Zack and iam 41 years old and live at the Gold Coast, Australia...
It has been one year since i have been diagnosed with GBM...
How it began...
I was studying Chinese medicine in Sydney and was doing exceptionaly well for someone who finished school at junior level.I began having problems remembering the names of the herbs, i would work all day and think that i had remembered them, next day i could only remember about 10% of them... The problem i thought was that i needed to know the Chinese and English names for them, i still got twenty out of twenty for the mid-term exam but put this down to luck, as i seemed to only remember the herbs i was asked about.
One Morning i woke up with what i thought was a flu... Bad headache, nausea, sore throat etc... After a couple of days the flu like symptoms abated and i was left with a dull pressure type headache and was very tired... Went to see the Doc after about 3 weeks of this... As i was on Chinese herbs he thought this may be causing my headaches and suggested i should have nothing for a while... He said i had chronic bronchitus and my blood seemed ok...
The headaches got worse... I thought it may be a detoxifying effect, as i had stopped smoking about three months before.... No such luck...
Went back to the Doc's and he sent me for a CT scan... Finished CT scan and was doing some shopping, got a call from my Doctor, he said i was to come and see him straight away, like NOW...
He said the CT scan had showed a mass on my front left parietal lobe... Not good... I needed to get an MRI scan to determin more about it....
I then booked myself in to hospital... They put me on a drip of dexamethazone(steroid to relieve swelling)...Waited all night in the emergency area for a bed... Was trying to be patient, the patient patient LOL.... At about 4am i asked if i was going to get a bed?
The reply was "Oh no, sometimes people have waited 4 to 5 days for a bed"... This made me quite angry as i thought i might die awaiting a bed... They also put the drip in wrong and my arm was swelling up due to leaking of the dexamethazone... I decided to leave as i was just going to get sicker waiting there... Thats when they told me i could not go anywhere and when i tried i was held down and given a sedative!!
Not the best start... Anyway this seemed to hurry them up a bit and that morning i was admitted...
Then i saw the neurosurgeon, he did not give me any eye contact and it seemed as though he thought i was dead already...
I was booked in for an MRI on Tueday the 1st of Nov... It turned out it was Melbourne cup day ( a horse race that everybody watches, they call it a race thats stops a nation), My transport to the hospital that was going to do the MRI got lost and did not show up...
Luckily my father had just arrived back from New York and told me to get on a plane bound for the Gold Coast... When i arrived here i was booked into a private hospital.... My MRI was performed that day.... Booked in for surgery next week... I felt a lot better as i new what could be done was being done... My neuro-surgeon Paul Poulgrain was great, bit of a sense of humour...
Paul Poulgrain then told me there was a very real chance that i would awake from the operation with some mental or physical handicap...I wanted to wake up much the same or not at all...
The biggest thing that helped me stay relaxed (most of the time) and except the cards that where dealt to me, was my practice of Vipassna meditation... I had already been practicing two hours per day for over a year before this happened to me...
Well i had the op, woke up feeling better than before, my memory and body still worked, was very happy... The Doc told me that the op went well and he managed to remove most of the tumor.... It would be two days before we got the pathology results....
The results where bad, GBM grade iv, death sentance apparantly.... The doc said although it was bad he did have one patient who was alive 13 years after...
Felt a bit sorry for myself for an hour or two before i snapped out of it...
I have had such a wonderful suport group, my 3 brothers, Step Mum, Dad and Mum... they have helped me so much and i realize it is very difficult for them, i love them dearly..
Started Chemo 5/23, 350mg temozolomide , 12 months..
About two weeks after starting chemo i started radio therapy, 33 treatments, highest level your body can stand, sometimes two treatments in one day...
My first MRI showed no tumor!!!
I did do some reseach about alternative therapys but this conventional therapy seemed the best...
I see a homeopath, naturopath, do yoga and swimming... The thing that has helped me the most is meditation..
Anyway did not mean to blab on for so long....
If i can be of help to anyone please don't hesitate to email me..
All MRI's have been clear, this does not mean that it won't come back but it is a good sign...
Just finished my 11/12 treatment of chemo, starting to make me a bit sick but not to bad...
This site has been a great support to me and thank you very much to the people that started it...
May all the suffering people around the world be happy...
God bless you all.
As of 5/05/2004 I am a 4 year survivor!
I am 31 now but was 27 when I was first diagnosed with a GBM. It came from no where.
One second feeling fine was planning a fishing trip the next in a full grandma seizure. Was rushed to the hospital and 2 days later diagnosed with a GBM. I was told I had 6 months to live there was nothing I could do about it and sent home.
I live in Victoria Texas sorta a small town about 60,000. I heard about a hospital in Houston called MDanderson in Houston. My wife called and a few days later we were there talking to the doctors about surgery. 2 weeks later I was there getting ready to have the surgery. I wasnt scared or even nervous not sure why I think it was because God was with me and I knew everything would be okay. The surgery lasted about nine hours they removed 45 percent of the tumor. Next came 6 weeks straight radiation. That removed some more of the tumor but there were still some little parts there. They put me on Temodar for about 2 years. It wasnt that bad really. I took Zofran for the sickness. At one point I was at home and I was thinking how can that little pill do so much. I wondered if it really did work. So before I took my Temodar I didnt take the Zofran. I will never do that again I was so sick.
As of right now I am completley tumor free. I go back to MDanderson once every 4 months for a MRI but am getting ready to switch to every 6 months. I was cured by God. I am fully back at work and people kinda just look at me like I am a walking miracle. I guess I am if you read all the bad news about GBM on the internet. I was glad to find your website that had people my age in it.
Email me anytime. RBMILLER@TISD.NET
I think this website is great. here's my story...
My name is Neva Muniz and I was diagnosed with a Glioblastoma Multiforme in July of 2004 when i was 19. I was stationed in Kitzigen, Germany with the US Army preparing to deploy when my face started going numb. first it was just a little bit of my right cheek but it eventually became the entire right side of my face. they sent me to have a catscan which is when they discovered "a mass". i was then sent to Walter Reed hospital in D.C. where they removed as much of the tumor as possible. they found that it is actually growing from my brain stem so it would be impossible to remove the entire thing. I did Radiation and Chemotherapy. my parents, who stayed with me noticed that after my treatments I became very tired and did nothing but sleep. I was rushed to the ER where they immediately had me in surgery to have my shunt put in. when I finished my treatments I was then able to go back to my home state of Arizona. I started being seen by Dr. Ashby at Barro's at St. Joe's Hospital in Phoenix. A week after I got home I spent two weeks in the hospital with blood clots. I went home and a week later I spent two more weeks in the hospital with pneumonia in both my lungs. After all this believe it or not i never gave up hope. my doctors said that optimism is probably why im still here. I recieved Chemotherapy all of 2005. through out all of this i lost my butt length hair, i became very swollen from the steroids they had me on, i lost alot of strength so much that i was in a wheel chair unable to walk for a few months and yet never have i given up. trust me i wanted to. its really hard to stay possitive when you have doctors tell you and your family that you will never have kids and probably only live a month. well im 22 years old now expecting my first baby this November. My husband (who has been with me throughout this whole ordeal) and i couldnt be happier. Now i go down every three months to to get a MRI to watch my dang tumor and make sure it doesnt grow. iv been off treatment with no growth since jan. 2006.
me and my friend Leticia in September of 2004
back when i was still at Walter Reed. i became
really swollen from the steroids
me and my husband Miguel May 2007
my brother in law Jose, Miguel, me,
my parents and my brother Ronnie. july 2007
My name is Hilary Newton, I am 28 year
old Glioblastoma sufferer from Marlow, near London, England. My friend
introduced me to your website and I found it a great source of positive
information in an otherwise sea of negativity.
I was diagnosed with a Glioblastoma IV in November of
last year. I experienced a real sense of deja vu when I read some of
the bio's on your site, especially with relation to diagnosis and negative
prognosis.
One of the main aspects of my diagnosis
that affected me profoundly at the beginning was the lack of positive
anecdotal evidence and also statistically evidence available in the
media and online. As you have identified in your site, this cancer predominantly
affects the 50+ demographic, and the prognosis of 6 to 12 months reflects
this. I would like to see the introduction of statistical evidence that
reflects the younger age band and the dramatically improved prognosis
that is resultant.
Diagnosis is a terrible time and the first natural exercise is to search
the internet for any positive news on this cancer, to combat the information
received from Doctor or Oncologist. I only wish I had found your website
on my diagnosis as all I could find where bios and statistics of those
already deceased and none who had lived over two years.
I was diagnosed after 3 months of trips to my GP complaining of severe
headaches. My analysis' ranged from sinus infection to depression and
I was misdiagnosed six times. Eventually I was admitted to hospital
and a CAT scan revealed that I had a large tumour in my right temperal
lobe. Due to the size and position of the tumour I was rushed to the
Oxford Radcliffe Infirmary and underwent emergency brain surgery to
remove the tumour. The operation was successful and most of the tumour
was removed, apart from microscopic cells that may have remained.
I left hospital 10 days later in time for Christmas, and was told to
return for biopsy results after Christmas. My biopsy results revealed
that I had a Glioblastoma Multiforme IV. I was then told I had 6 - 9
months to live. At this stage I was solely receiving National Healthcare
treatment (NHS), the state run healthcare service in the UK. I have
many positive experiences from my time under NHS care, that care I received
pre and post operation, in Oxford, was exemplary and caring, however
one problem I came across time and time again was an endemic negativity
in the institution. When I was diagnosed, the news was delivered by
one Doctor, who was not my consultant. There were no other nurses or
counsellors in the room. I was told that I would have 6-9 months to
live and that treatment would consist of radiation therapy, but that
this would be subjected to a waiting time of 6 weeks. No chemotherapy
was offered at this point.
As I absorbed this information my partner Jason (now husband) went onto
the internet and found no evidence that this prognosis was inaccurate.
We were in shock for a long time. We also have a daughter who was 18
months old at the time and I did not consider death an option as I would
not entertain the idea of leaving my daughter without a Mother. However
before we could start on a plan of action I became very ill from an
allergic reaction to the combination of drugs I had been given and was
re-admitted into hospital.
While in hospital I became despondent as I was getting weaker and still
absorbing the fact that I had terminal cancer. I had private medical
insurance through my job and asked Jason to look into transferring me
to private medical care. I had experienced some very positive moments
under NHS care, predominantly the nurses and Doctors are very professional
and caring, and I met many that demonstrated world class healthcare,
but I was concerned over the wait for radiation therapy and the lack
of chemotherapy as I had heard that the best approach for the longest
survival was combination therapy of radiation and Temadol.
Jason approached a close friend of mine who is a journalist and asked
her to research the best Oncologist in London in relation to Glioblastoma
and young people. She found Dr. Plowman who works at Great Ormond St
in London and at the private Cromwell hospital. I was transferred there
in January and immediately began a course of Temadol and started an
intensive regime of Radiotherapy.
I took the treatment well, with little side effects and was able to
undertake treatment as an out patient from mid February this year. This
treatment finished at the end of March and I am now back at work part-time.
In addition to this treatment I also researched alternative treatments.
I improved my diet and ate only organic foods for 6 months, I consulted
a world renowned Homeopathic Doctor, in relation to Brain Tumours, Dr.
Ramakrishnan, and am taking this medication for 2 years. Additionally,
I also travelled to Brazil to see an energy healer, John of God, and
went with a group to be healed by him at his house in Central Brazil.
This experience was amazing and I met many different people who had
all put their faith in this treatment and achieved dramatic results.
I retuned from Brazil at the beginning of August and almost immediately
had an appointment with my consultant Oncologist in London to discuss
the results of my first MRI since diagnosis. Jason and I arrived at
the office expecting a reduction in tumour size as the best news we
would hope for, but were greeted by a very positive Dr. Plowman who
showed us a clear scan. No cancer cells could be found. This was the
best news we could expect, however we realised that this was simply
the first stage and microscopic cancer cells could still remain. My
next scan is in February 2006.
In summary, I would like to encourage all those who are going through
this terrible experience, and it seems to be on a dramatic increase,
to stay positive and to not accept the initial prognosis. The biggest
threat to sufferers are statistics, do not believe them. Most statistics
are taken from suffered 50+ and therefore do not reflect the true survival
rates of people with this cancer. For those in the UK, insist on combination
therapy, this is radiation combined with chemotherapy drugs, not always
offered on the NHS but should be insisted upon.
Research, research, research. Get on the internet and look out for alternative
therapies. Healers, homeopathy, diet, amongst others, have been proven
to help, and at the very least will ensure that you feel stonger and
healthier.
I am a survivor and I intend to be around for a very long time to come.
Any comments/questions email me at: hjnewt1818@yahoo.co.uk
My husband was having terrible headaches in Dec 2006 for about 3-4 days straigt without relief. He was also suffering from memory loss and confusion during those days.
He went to the ER on 18 Dec 06 and after a CT scan revealed a tumor and small amounts of bleeding, he was admitted to ICU. He had surgery 2 days later and most of the tumor (in his right frontal-temporal region) was removed. A small percentage was left behind because it was too close to his motor strip. He did 7 weeks of radiation and chemotherapy (temodar) and then had a 4 week break (which we took advantage of and went to Las Vegas). He has had 2 rounds of Temodar boosters.
We just went to his doctor for MRI results yesterday… It seems the treatment is working, and his tumor appears to be shrinking. We will continue on with treatment and pray for future MRI results to be good.
Hi, my name is Femme and reside in Queensland, Australia. My daughter Nicole was diagnosed early Jan. 2006 with GBM.
Nicole is 34 years old, married with a son (7) she is my firstborn and always been the joy of our life. Does not smoke or drink,she had a good job as financial controller.
Jan. 4th 2006,
Nicole was suffering from headaches just before Christmas 2005 and had terrible mood swings, this was not the person we knew, she was always happy go lucky.
She decided to see doc. who said she was suffering from Migraine and prescribed her med.
The headaches did not subside and doc. recommended a scan. The scan came back, devastating news, a massive tumour.
She was send to emergency dep. at the hospital where she waited 18 hours for a bed, finally after 2 cancellations for surgery she had majority of tumour removed. She breezed through surgery and recovery was unbelievable. Then the wait for results, which were devastating, we were told she had GBM, no idea at the time what the hell that was. Nicole decided to came home as her treatment would not start for 7 weeks which to me was ludicrous as I found through research it was suppose to start within 2/4 weeks after surgery.
Her treatment was radiation and chemo (temodal) combined for 6 weeks. it took its told at the end of treatment, she was so tired and had lost lots of her beautiful long hair, she decided to cut it short and wear bandannas, which looked great on her.
We received great support from family and friends and Qld. cancer council.She is at present on extended treatment of chemo (temodal) 5 days in 28 for 6 months. Her last MRI showed the tumour had shrunk from 5.8cm to 2cm, we were sooooooo happy with those results.
Although we had to fight the bureaucrats in the health system, our positive outlook has made the difference. I say do as much research as possible and front the docs. with all you have, as knowledge is power.
Our MOTTO now is " where there is FAITH there is HOPE, where there
is HOPE, Miracles can occur.
Nicole and Reece
Nicole in Bali
I was 18 yrs old and a senior in high
school, with pretty blonde hair, lots of friends, and aspirations of
going to college asap. One day I had a gran mal seizure/tonic clonic
seizure out of no where. I thought I was going to die right there, in
front of all of my friends!! I woke up later in the local hospital, where
they told me that CT scans showed that I had a golf ball-sized mass in
my right parietal lobe.
Then I was shipped to Fort Worth, where more tests were done, and the
decision was made that what I had was a tumor that needed to come out
asap. So it did, in February of 2001 I had my first surgery ever and
it just happened to be on my brain. The doc only removed around 60% of
my tumor because of its shape and "tentacles" to avoid damage.
I made it through just fine, and only had to do minimal physical therapy
mainly on my left side.
The tests determined that I had a Level 2-3 astrocytoma, so my next step
was a month of radiation. My last day of radiation was on the day I graduated
high school. My first day of chemotherapy was on the day I started college.
One year later, I was on summer break from college, and re-cooping from
chemo, and another doc decided that he could get my remaining tumor out.
So we went for it. On July 12, 2002 I had my 2nd brain surgery and was
told that he "got it all". So for the past 3 1/2 years, I finished
college, found me a good boyfriend, and have been doing wonderfully...or
so I thought.
On August 14, 2006 I returned home after my annual check-up MRI and while
laying on the couch with my boyfriend I had 2 more seizures, these were
more intense than the first and I don't remember them at all. It was
soon discovered that I had another smaller growth in the same area of
my brain. So long story short, my 3rd brain surgery was succesfully completed
on August 24, 2006. The pathology reports came back with terrible news,
I now had a high-grade glioblastoma multiforme and my prognosis was terminal,
becausealthough they removed this particular marble sized tumor...I also
have other "areas of concern".
After much stress and turmoil, and 3 very different opinions from a neuro-surgeon,
a radiosurgeon, and a neuro-oncologist. I have opted to go with the least
risky option at MD Anderson in Houston, TX. I will be enrolled in a clinical
study at the beginning of October. I figure if my prognosis is eventually
going to be terminal, I want to go being as much like myself as possible
and hopefully benefiting others with my trial.
Kelli Nix, Austin, TX, USA
I was diagnosed with a Grade IV GBM back in December of 2005 (at the age of 36) after suffering from painful headaches for about two weeks. Within a couple weeks I had a craniotomy at Duke University Medical Center to remove the primary tumor from my right fontal lobe.
For my first treatment plan, I underwent 30 radiation treatments and six weeks of temodar. However, despite the treatment, three more tumors showed up on an MRI in March 2006. As a result I was then placed in a clinical trial out of Duke University consisting of Gleevec / Hydroxyureah / Rad001.
I was cruising along great for the last 16 months until about three weeks ago. Then on July 30, 2007 I experienced what my docs referred to as a focal seizure. The seizure, of course, prompted numerous tests including an MRI. The MRI showed a small area of inflamation where the primary tumor was originally removed back in Dec. 2005. Needless to say, this prompted a change in my treatment plan. As a result, my doctors and I decided on the latest and greatest treatment of Avastin and Irnotecan (CPT11) as the best option for me. I started my infusions on Aug,06, 2007 and will obviouly have bi-weekly infusions for a while to come!
I can't thank you enough for creating such a positive website for those of us who are currently battling, or who have loved ones or friends battling this horrible disease! I look forward to spending many more years with my wonderful wife and children (ages 10 and 4). I am confident I can and will beat this disease. Throughtout my current 18 month battle with GBM, I have continued working out daily and try to stay as active as possible with my family and friends! It is great to be alive and I fully intend to stay this way!
Thank you ifor allowing me to share my story,
Brian Parrott
Simpsonville, SC
Dear friends and family, and to all those who are supporting us at this time,
As I sit quietly in our study reflecting over the last week, I wonder where to find the words to express our deep aching pain and my brokenness, yet at the same time our desperate hope and faith in Jesus.
As a Mom or a Dad, no-one ever teaches you to how to respond to Dr's and Specialists and Oncologists telling you that at best with no treatment, our precious Joel has a few months with us, at best, with treatment, we may be "lucky" to have 1-2 years with him. However the quality of life
is not great, as slowly, as more radiation is given to control the growth of the tumor, so more of the brain begins to die.
The Dr's have confirmed that Joel's Tumor is malignant, it is called a "Glioblastoma" tumor of the brain. It is very rare in young children and seen more in middle to elderly patients. It is a very fast growing cancer / tumor which they refer to as "very aggressive". Hence the treatment has to be very aggressive too, with a combination of both intensive Chemotherapy and radiation.
The Oncologist, a wonderful warm lady, who just sat next to me today, and wept with me, as she shared my pain, would like to start treatment in about two weeks. We have to just wait for the swelling and brain to settle after the surgery.
As our family tries to deal with this tragic news, Kev is filled with a sense of peace and we are totally trusting in God to heal Joel, despite the stats and diagnosis or prognosis. We cannot dwell on the "why"? or we would end up in a heap!
Joel is our gorgeous 7 year old boy who has just been given to us by God for a time, and we will walk day by day calling out to God for his total and miraculous healing power. That the same power that raised Jesus from the dead would heal our boy because we serve a mighty and compassionate God. We feel that the enemy would love us to be in a place of fear, but friends, we are putting our hope and faith in Jesus. God spared Joel last week, and he can do it again.
We have had such encouraging, and unbelievable support, that has been overwhelming at this time. We are humbled and so grateful to be in a community of friends that have come alongside no matter what time of the night, arrive to clean our pool, arrive with warm cooked meals every night - what an awesome support the body of Christ is. We welcome every prayer at this time.
As parents, as people, as believers, no one ever knows when Jesus will call us home, whether we are 7, 27, or 77, all we can do right now is enjoy every precious moment we have living as normally as possible under the circumstances.
We will walk this through with both a medical team and spiritual warfare believing that God has more in store for Joel and us as a family.
I have tried as best I can to summarize where we are at, as I know so many of you must be wondering. Our lives have changed over night, God is taking us into a new season, and may his name may be glorified at the end of this journey.
So many people have asked if there is anything they can do and as a family we ask that this news does not become all consuming, and the topic of all conversations, but rather lift us up in prayer, join us in this spiritual battle in your quiet times and corporate time.
We would love some space and freedom to walk as normally as possible, that Joel is loved, and accepted, not stared at, or spoken of, every time we are seen. What we would love, is support, encouragement, faith, hope and much prayer.
May we look back on this time and see God's goodness and his hand in every detail of this process we start to walk out.
God bless you all, and thank you for every sms, phone call, visit, and scripture that has been shared with us.
Lots of love,
Kevin, Monique, Jade, Joel and Chelsea.
My husband Lucius was diagnosed at age 45 with an inoperable golf ball sized GBM, in August of 2006.
He was initially treated with Temodar/radiation during which time he experienced a 125% growth. He was then entered into a trial at Duke University where he received hydroxyurea with gleevec. He experienced continued progression.
The tumor reached the size of a tangerine. Lucius continued to work despite vision loss and extreme fatigue. In February of this year he was the first person enrolled in the Tarceeva/Avastin study at Duke. In the first 6 weeks he experienced 75% reduction.
When we returned in May, however, it appears that the effectiveness may be running it's course. We return on 6/18/07 and will find out if he can remain on trial. The side effects of the Tarceeva have been absolutely brutal, and I don't know if it has been worth it.
We have two daughters, ages 11 and 6. This has been a nightmare of epic proportions, but our faith is sustaining us. He is fighting so hard for me and the girls, but it is so painful to see him robbed of his strength and vitality.
Hello:
I will like to tell our story to give hope to other people.
I am from Argentina so sorry for my english.
My husband is 33 years old and had a complete resection of a GBM in october
2003. He did radiation and chemo (9 cicles of temodal, 5 days each 28
days). In november 2004 the doctors discovered he also had testicle cancer
(not metastasis), so he went throught surgery and began a new chemo (4
cicles).
In reference to the brain cancer, his MRI controls were always almost
the same each other, meaning everything was ok. In july 2005 he started
to have some headaches, he repeated a MRI and things were changing, but
not too much to take an action.
Finally, the headache grew more and in september 2005 he went through
surgery. The doctors told us he had an excellent surgery and that they
could take everything away, and also told us that it was GBM.
The final report gave all of us a great surprise: it was necrosis because
of the great dosis of radiation he had received, so he is ok.
He has to make a MRI in november, so I will let you know.
He always continued with his normal life, we have a 3 year old daughter
and he is very optimist. When he was finishing the testicle treatment
he received a work offer in a better company and with a better position,
so he made a change.
The cancer testicle is under control. He is treated in Argentina and
supervised by NCI.
This is our story. If I can help, please let me know. My name is Sonia
and e-mail soniareij@hotmail.com
By by
In January, 1993, at the age of 38 I was diagnosed with GBM.
In Oct. 1992, I began to notice little changes in my mental capacity. Difficulty in solving problems, taking longer to complete tasks and terrible short term memory. At first I thought it was the pressure of starting a new job. I was a paralegal for a chapter 7 bankruptcy trustee and preparing for my first trip to Europe to meet my husband on his temporary jobsite in Spain. Just before Christmas the left side of my face went numb like I had been to the dentist. My family Dr. said it could be Bell's Palsy, not to get upset just call him and come in.
By January he ordered a MRI that showed 2.5 cm tumor in right temporal lobe. Had biopsy and tumor resection.Biopsy revealed GBM IV. given 5% chance to live until Christmas . After 33 radiation treatments I went to Brigham & Women's Hospital In Boston for Stereotactic Radiosurgery. Followed with MRI every 3 months. No actual tumor growth but area of necrotic tissue from radiation. Had my first seizure May, 1993 just after trying to return to work. Started with Dilantin then tried Neurontin. I saw bright flashing lights and felt strange so my husband took me to ER in May, 1995.
The tumor was growing again. (I had just had MRI in April that showed no change) The ER DR.s told my family I probably would not make it through the weekend because of the swelling and seizures. Well I did and after my son's HS graduation I had an ice cream cone shaped and sized tumor removed. I was totally blind and disoriented for the next three months. slowly began getting my bearings and one day like a light turning on my vision returned to the extent it is today. I have lost most left side peripheral vision. I have some left side weakness. I still get confused when things get hectic. The fatigue is not as bad as it was in the beginning but I still take regular naps and get plenty of sleep. and I now am on Tegretol XR and have been seizure free for several years. A friend who also had a serious health problem told me there are no bad days now that there was almost no days at all, we just have a "bed" day every now and then!
I am driving now, plying golf and trying to learn to paint (interesting since I have little depth perception). I know I was granted a miracle from God. I had so many people praying for me he decided he needed to keep me well. Everytime I slipped a little so many people were trying to get his attention he couldn't take care of anything else. Faith and Prayer are as important as the best Doctors.. Best wishes to all who read this. Never give up!!
After hitting send I realized I had not included my name with my story the 38 year old diagnosed in Jan 1993 with reccurrence in May 1995. Also I did not do chemo because at that time chemo did not cross the brain blood barrier and was not effective. I understand now they have fixed that problem to some extent. My name is Kathleen Rhodes and I will be 49 in Oct. Thanks for the site. Even after all this time it helps to read other stories
Hello my name is Kevin Roberts and I am 31 years old. Recently I was diagnosed with GBM, and I wanted to share my story with you. I have written my bio as a time line to show everyone how fast this has all occurred. A lot of things took place within 4 weeks, from having a low grade glioma to the mass possibly being an infection, to the biopsy showing glioblastoma.
July 2003 I started noticing a tingling and numbness sensation in my left arm, from the elbow down into my ring and pinky fingers. 2 weeks later the numbness and tingling were gone. Now I have no fine motor function in the left hand and family and friends notice facial drooping and slurred speech.
Sept 2, 2003 I set up a couple of appointments to see specialist about my arm and speech. Both appointments were not scheduled until October, so I made an appointment to see the family PA.
Sept 3, 2003 I saw our family PA and he was concerned with the symptoms I was having. And since West Nile was at its peak I was sent immediately to the ER. At the ER the doc said the symptoms are like Bell’s palsy, but lets run some tests to make sure. 2 hours later I had my first CT scan. 20 min after that they came to get me for another scan with contrast this time. At this point I was scared, something had to be wrong if they came to get me so fast the 2nd time. After the 2nd scan the doc came in and told us he was admitting me for a poss. Brain tumor. But we wouldn’t know more until an MRI was done in the morning.
Sept 4, 2003 That morning I had my MRI with contrast done. It wasn’t until that evening when the neurosurgeon came in to talk with us. Dr. Murk told us that the MRI showed a mass deep within the frontal lobe. That is why I am having trouble using my hand. By looking at the MRI they believe the mass is known as a low-grade glioma, but are unsure until a biopsy is done. Dr. Murk also seems a little concerned because I had a CT scan done April of 2003, due to a head injury. April’s scan showed nothing significant at that time.
Sept 5, 2003 Dr. Murk scheduled me for another test. An MR spectroscopy, which reads the molecular makeup of the mass. The results from this scan are not consistent with glial tumor levels. Instead of being depressed, my levels were elevated. Unsure of what this mass is Dr. Murk called for Infectious Control, and the oncologist to test for other illnesses or disease in my body that might me causing this mass. All the results can back negative within the next 5 days.
Sept 10, 2003 I had another MRI done and this time something changed. The tumor remained the same size, but the enhancement changed. That night Dr. Murk transferred me to the University of Colorado Hospital, Denver. The neurosurgeon team was lead by Dr. Lillehei who was my primary surgeon. He suggested that the mass was a possible demyelination. He had recently seen the same type of MRI scans on a different person and mine apperead identical to his.
Sept 12, 2003 Another MRI was done and again there was change in the enhancement, but not the size.
Sept 13, 2003 I was released from the hospital with a follow up appointment on the 22nd. At that time another MRI will be done. I’m just glad I am getting to go home at this point.
Sept 22, 2003 After the MRI I had an appointment with Dr. Lillehei and we went over the scan. Things hadn’t gotten worse, but again it changed. At this point we scheduled a biopsy. I still had no other complaints besides not being able to function my hand properly. No illness, no fatigue, nothing unordinary.
Sept 25, 2003 I was scheduled for my biopsy. After they withdrew a sample and sent it to pathology, Dr. Lillehei said he believed it to be low-grade glioma. Once again right back to the beginning prognosis. I was scheduled for a craniotomy on Oct 1st.
Oct 1, 2003 The craniotomy was performed while I was awake due to the location of the tumor. Dr. Lillehei and his team removed almost all of it, pretty close to the size of a tennis ball. It is very difficult to remove all of the tumor because it has what they call “Fingers”. It branches out as it grows. I lost some function of my left arm, hand and leg, but I will regain a lot of that back. During the surgery they placed chemo wafers inside on the tumor sight to try to kill whatever they missed. I was released from the hospital 64 hours after surgery.
Oct 13, 2003 I had a follow up appointment with Dr. Lillehei to have the staples removed and go over the results from pathology. I now was informed the tumor was glioblastoma multiforme grade IV. Which is the fastest, most aggressive form of brain cancer. Now I have to start treatment and the long road of what’s ahead. With my family and friends support I know I will be able to over come this obstacle placed before me. It will not be an easy journey, but it is one that I have to take.
page
3 Bios
bios | treatments | updates | introduction | links
Guestbook
|
Live
Chat Room
|
