|Jessica Baker - Bio|
I wanted to add my story to this website as it is the first information I have found relating to my type of brain tumour.
I live in Australia on the Sunshine Coast, Queensland. I had extreamly painfull headaches for Sept - Oct 2003. After visiting doctors complaining of the pain and nausea I was told to go home and take headache pills. The pain persisted and I visited another doctor who my now husband and I insisted that further action be taken and he arranged for a CATscan. Friday, the day before my 26th brithday the results were that I had a brain tumour. My headaches and nausea became worse and an appointment was made to get and MRI on Wednesday and see the nerosurgen at the Royal Brisbane Hospital. I had the MRI and I saw the neurosurgen on Thursday where I was told that as the tumour was located in the pineal region the tumour was most likely to be benign and they would operate. I took a turn for the worse and the last thing I remember was getting a shot of morphine. Next thing I woke up on Friday afternoon in ICU after surgery. A few days later the results from the biopsy came back, GBM (Grade 4) not a benign tumour at all. Now it is August 2004 I have had radiation therapy and am on chemotheray (Temozolomide/Temodal).
The surgery removed 70% of the tumour and the last two
MRI's show the tumour has reduced in size to 8x7mm. Temodal, positve thinking,
organic food, meditation and healing I belive have all contributed to
the tumour shinking. My oncologist told me that the radiation would be
usefull but the chemo would most probably not be usefull on my tumour!
|Sheryl Benton - Bio|
My wife, Sheryl, has been diagnosed with GBM IV. The story goes like this:
Good news first, our first child was born in June 2001, a boy (Caleb). In August of 2001 Sheryl (age 24 then) began to experience severe headaches that Tylenol or Advil would just not help. She began going to doctors for help about 1 month later. Sheryl was told several different things over the course of the next 11 months that would explain her headaches (stress, hormones, too much caffeine, need new glasses, etc) and given several different medicines for migraines - the last being Imitrex.
Finally in August 2002 we saw a doctor who told us that Sheryl needed to have a CT scan just to make sure that everything was OK. Well it wasn't.
The CT scan showed a large tumor (7.5cm x 5cm) in her right parietal lobe. We were immediately sent to have an MRI and to see Dr. William Hunter, a neurosurgeon, near Charlotte, NC. We discussed the MRI with Dr. Hunter and he was surprised that Sheryl was doing as well as she was based on the size and location of the tumor. Dr. Hunter told us that he needed to get the thing out very soon so surgery was scheduled for August 12.
The surgery was very successful, Dr Hunter was able to remove everything that was visible on the MRI, he said 99% was removed because there were surely some microscopic cells left that could not be seen. The surgery did leave Sheryl very weak in her left arm and leg. She is currently going to physical therapy sessions to regain her strength and movement, the doctors are very pleased with her progress.
The original pathology report revealed that the tumor was Anaplastic Astrocytoma III. We immediately started our hectic search on what to do, where to go, and what treatments to pursue. With the help of Sheryl's sister, Orenda, we contacted doctors and people in New York, Boston, Houston, and North Carolina at such institutions as Duke, Wake Forest, MD Anderson, and even the Burzynski Institute.
We decided to start treatment with Temodar (with Zofran) in 28 day cycles (on 5 and off 23) for 12 months. We also scheduled an appointment at MD Anderson to further discuss treatments with doctors there. Sheryl had an MRI on October 8, 2002 and we flew down to Houston to go to MD Anderson. The MRI looked very good, no signs of regrowth! However, after reviewing the pathology slides there, they concluded that the tumor was actually a GBM IV. At this point we decided to go ahead a have Sheryl receive 30 radiation treatments that the doctors in NC had originally suggested in conjunction with the Temodar. Sheryl is in week 2 of the external beam radiation treatments now.
So far the side effects of the treatments have been very mild, we pray that it remains that way, and that the treatments are successful.
The past 2 months have been very stressful (spiritually, emotionally, and physically). Many things have given us strength and courage to deal with this disease 1. prayer and faith in God 2. love and support from family, friends, and community 3. good doctors 4. and last but not least, a now 16 month old little boy that just won't take no for an answer!
Reading the survival stories on [this] website also gives us hope that this thing can be beaten and Sheryl plans to be around for a long time so she can tell her story and give others hope.
|Elmer V. Bryant - Bio|
Nov 18, 2001 had a grand mal Seizure and was rushed to the hospital in an Ambulance in the middle of the night. Never had a headache or anything before. Never even had any type of surgeryNov 19, 2001 had a CAT scan and a MRI and they revealed not one tumor but 2.
Nov 28, 2001 had brain surgery to remove the big tumor at the back of the skull. The smaller one in the upper left of the skull was to close to vital nerves.
Spent 22 days in ICU. Had pneumonia twice.
Dec 20, 2001 Transferred to Critical Care Unit. Developed headache, neckache and stiffness of neck. They put me on a pain medicine where I could administer it myself (Max. 6 drops a day). Well it got stuck on and I slept for a day and a half straight before my wife noticed that something was wrong. Nurses disconnected the machine.
Dont even remember Christmas, slept right through it. Slept for almost 2 days. Headache still persisted. Dr. Shandu ordered mega dose of antibiotic to fight infection and she was treating it as if I have Meningitis.
Dec. 28, 2001 Midnight - Dr. Disney did a Spinal Tab to determine if I have Meningitis.
Dec 29, 2001 Result of Spinal Tab came back good. No infection
Dec 31, 2001 was transferred to Rehab Inpatient, to weak to walk. Went into the Hospital weighing 175, came out weighing 135. Not a diet that I would recommend.
Jan 21, 2002 was released from Pollock Rehab Center, able to walk, but still weak.
Jan 31, 2002 Had biopsy of remaining tumor done at UCLA.
Feb 14, 2002 got the results of the biopsy and it was the worst type of tumor, a glio- blastoma Multiforma or GBM. The diagnosis was 6 months to a year max. What a Valentines gift for my family and me.
March 21, 2002 Started 6 weeks of Radiation. Monday thru Friday every day at 11:00. Had another MRI and it was all clear. Thank GOD!
July 23, 2002 12 months of Chemo (pill form) 5 days of pills 23 days of rest. Started on May 2002 and ended on June 2003. Had MRIs every 2 months and they are all clear.
March 10, 2003 started back to work part time. Every Specialist that I saw said that I wouldnt be able to go back to work. In fact they said I should go home, get my finances in order and enjoy what time I have left. That made me real mad. I told them I am not coming all the way down here to have you quit on me. And if you are not going to fight for me I will find another Doctor who will!
Note: I have been taking Coral Calcium this whole time. Dont know if it is the reason that I am still here, but I am not going to quit to find out.
|Tim Clover - Bio|
First I want to thank YASG and the people behind it for all the support you have given me since finding you (through my sister in law) just an hour ago.
My husband, Tim, was diagnosed with GBM/4 in November following a grand mal seizure at home. Fortunately I was right with him and was able to dial 911 immediately and get him to the hospital right away. Our lives were turned upside down when the MRI found a growth the size of a ping pong ball in his left parietal lobe.
In December, he had an initial surgery to remove the
growth and do a biopsy. The diagnosis threw us completely. Tim is a very
healthy 55 year old man who
Tim had a second surgery that was more aggressive in
removing the tumor and received 3 Gliadel wafers. This was followed by
6 weeks of Temodar and daily RT. In early March, just a week before the
next round of Temodar was to start again, he had a seizure and at this
time the MRI showed a small "spot" just outside the radiation
field. He was switched to Irenotecan (CPT
Never had we imagined ourselves in the situation that we find ourselves. And yet from the very beginning, we try to find the silver lining, the gift in each situation. We show gratitude everyday for one another and for all the friends, family and people who are supporting us.
I am so thankful to have found this website. We have
been posting Tim's story on Caring Bridge which has been wonderful for
our friends and family to read. This site really helps us feel connected
and supported in a world that is still very new and uncertain to us.
It feels good to offer some support to others. Our thoughts and prayers
go out to everyone affected bythis disease.
|Steven Daab - Bio|
My story follows.
My first symtoms appeared when I was 16. I experienced periods of intense dizziness. I was sent to a neurologist who believed every thing was psychosomatic. He treated me for 3 years. The frequency of my spells increased through high school and followed into the Navy. I was released from the Navy because they also thought everything wrong was just "in my head". ( how right they were). I was only in the service for 4 months. I was married at the age of my symptoms took a dramatic turn.
I began to experience crushing headaches, gun barrel vision, inability to swallow, no balance, and slight seizures. I was admitted to the Hospital where my Dr. said" we still see nothing wrong but what is not there is now a little more distinct. (we were all filled with confidence after that statement). My mom's GP then saw me and suggested I immediately be transferred to Schenectady General (in New York) and see Dr. Gerald Haines.
I was examined by Dr. Haines and was admitted that day. They drilled a hole in my head , attached a tube to a bottle to relieve the pressure build up. A shunt was later installed. This process had to be repeated on three separate occasions due to failures in the shunt. Technology did not yet exist for today's tests. The hospital had not yet purchased a CAT Scan machine let alone a MIR. One test was a pneumoencephalogram. They put me in a chair that went in a circle (like a hamster gage) gave me a spinal tap and put in an air bubble. The chair then moved and they followed the bubble to look for obstructions. Worst test I EVER had. Did it twice. I continued to worsen and the decision was made. They knew where the concern was in my brain but did not know what it was.
On Jan 2 1974 a had a craniotomy. Dr. Haines remove a tumor of the cerebellum. The actual tumor was the size of a golf ball with a protein filled cyst attached. It was a low-grade glioblastoma. I received radiation treatment for a long time after.
Dr. Haines was and is my angel. I owe him my life. Four years later my shunt had become infected and developed into spinal meningitis. Dr. Haines was amazed just given the fact that I had survived long enough to get sick again. While in the hospital I had a severe reaction to a derivative of penicillin. So out of the 33 day stay I recall about 6. A blessing I suspect. I have some permanent problems. I have terrible balance,( I would fail a roadside sobriety test miserably) and I get head rushes) when in certain rest positions. A road map of scars on my head and stomach (from the shunt).
All in all I consider myself blessed and fortunate to be able to tell this story. I have the love of a wonderful wife and two daughters aged 8 & 9. If I may ever be able to lend support please let me know.
18 and then (I am sure it was just a coincidence)
|Susan Davies- Bio|
Hi! My name is Susan Davies. I also have been diagnosed with a Grade 4 Glioblastoma Multiforme!! (In March 2002) I could hardly believe it! I actually live in Bermuda. I went to Emergency at least 3 times complaining of seeing "flashing lights". Then I sometimes developed a headache and upset tummy...so they assumed it was migraines.
I finally decided to follow my sister's advice and see someone in Philadelphia (where she and her family moved to) at the Uof Penn hospital about it. They were excellent! They said it sounded quite like a complicated migraine but if I was American then I could get insurance to cover the cost of a CAT scan which they would do just to ensure that it wasn't something else. It would cost me personally $1,000 if I wanted to do it on my own.
As I was going to have an appointment with a visiting neurologist from Boston soon, I said to forget it and they prescribed a drug called, Verapamil for me. I took it daily until I left PA for Bermuda again. The next day, I forgot to take a tablet and had these horrible flashing lights. (I was actually having brain seizures, I now know.)
My parents, whom I was visiting at the time, decided to rush me to the hospital with my 3 year old son. When I got there I could not answer some of their questions...then later I had a serious urge to throw up and I did..many times.
They did not know what to make of me. My husband was contacted as he was at work catching up on work and finally arrived to deal with me, he's been to the last 2 visits as well. Again, the staff were confused as to what was wrong with me. FINALLY!! At nearly 2am they decided to give me a CAT scan.............they saw a depression in my brain!!!
Thank God for the little sweet man in the dept there who finally clued in that it could be something to do with my brain!!! Or else I could be still awaiting a discovery of my problem!! They were thinking of getting me a psychiatrist. So, even though I have this thing, I am still grateful now that we know what it really was!
I was told that they would have to fly me out to a city of my choice to perform surgery or look at my "tumor" so I chose Philadelphia- as my sister's family was here, rather than have to stay in a hotel room somewhere and cryall the time. Pathetic! No radiology in Bermuda...I still cannot get over it. Soo many people get cancer in Bermuda- I do not understand. I love the people helping me. They are so friendly and kind.
Surgery was done and they removed a 7.75cm tumor!!! I didn't know my head could fit something that large!! People now say, in a joking way, "So that's why she never got the jokes!" Very funny!
I am going through the 6 weeks of radiation and then ,or possibly alongside they may offer chemotherapy, which is supposed to be great for brain tumor patients. It does not apparently cause much nausea, vomiting or loss of hair!! Hallelujah!!! The radiation is a bit of a hair nightmare, however. I could lose hair in strange places on my head!! Great.
Anyways! I am trying to keep up a positive attitude.
I have people all around the world praying for me, even small children!
I am 34, a primary school teacher, and thankful to be alive right now
to deal with all of this! I know- and keep getting told as well- that
this will make me stronger...I believe it will.
Susan with 3 year old son Simon
Susan with husband, Gareth
picture of my family with my sister's family
|Sherry Day - Bio|
My name is Sherry Day and I am 27 years old, married with a 9 year old son.
I started having headaches a year and a half ago with nausea and extreme pain. I was told it was migraines and job stress. I have my dream job of a social services case worker and work with foster children so stress was a daily occurrence. This past summer, my husband and I started trying to have another child, so I went off my birth control and I just did not feel right after that and attributed all my symptoms to hormones, shortly after I had two incidences of numbness on my left side and my hand drawing up in a ball. I did nothing at that point just thinking it was a pinched nerve or from driving all day.
Then in December 2005, I was at work and had a seizure out of the blue. All I remember is walking down the hall and then I woke up in the ER with all my co-workers staring at me. I had a CAT scan and it showed a mass on the right side of my brain. I was transferred to another Hospital where I had an MRI and the Neurosurgeon jumped on the idea of surgery but then after talking with a more experienced surgeon they opted for just a biopsy. the biopsy first showed a grade 3 astrocytoma and when we met with the neuro oncologist he offered a positive outlook he recommended surgery, radiation and chemo. we met with the more experienced neurosurgeon a few days later he opted little hope of resecting enough of the tumor and told me to make the best of the time I had left with my son. this was all at Christmas so we waited until after Christmas and I made a self referral to MD Anderson in Houston TX and they have been wonderful! the neuro surgeon said it was more of a grade 4, but he felt he could get all the tumor and they wanted to resect it while I was awake to keep from damaging my motor strip. they did a functional MRI scan and lots of neurological testing and preparation first. The neurosurgeon tried to rescet all the tumor but when they woke me up during the surgery I had a seizure so he was able to only get 80% but they rest can hopefully be gotten with radiation and chemo. it's been two weeks since my surgery and I feel I'm doing great. I had some weakness in my left hand but it gets better everyday.
I've been told it'll come back, but I'm hoping to see my son go to college. My best advice is to research your options. don't settle for anything, there is hope.
|Laura DeBarba - Bio|
Now that I am 10 months out from diagnosis, I feel that I might be an inspiration to others. I am 44 years old and was diagnosed with GBM in December 2004. I had surgery on December 28th where they removed the entire tumor. I completed 6 weeks of radiation in March and started on Temodar later that month. I have been rotating through 3 therapies; Temodar, CCNU (oral BCNU), and now CPT11 (IV chemo). The CPT11 is the toughest and the CCNU was a breeze.
I will complete this in rotating therapy in April. The purpose of the
rotating therapy is that cancer cells become resistant to chemotherapy
if you remain on it for too long. The cells figure out how to defeat the
therapy. This is similar to antibiotic resistance; the bacteria figures
out how to beat the antibiotics. I will remain on Tamoxifen for the following
year and, God willing, that will complete my therapy. I have also supplemented
my therapy with herbal therapy recommended by Jeanne Wallace at Nutritional-solutions.net.
She is a renowned nutritionist and specializes in brain cancer. I have
been doing guided imagery and have just started acupuncture treatments.
I plan to continue the alternative treatments after I complete chemotherapy.
|Mike Engelhard - Bio|
This is my son Mike's story. I am writing
it because he refuses to access any material available regarding GBM. He
knows that it's serious but he doesn't want to know more than that. I think
|David Fitting- Bio|
Hi, I have been to The
Young Survivors Site often. At first I was really looking for pediatric....but
through this site I came to learn about David Bailey...I went to his
website and found his #....I ended up calling him and he referred me
to Dr. Friedman who in turn sent me to Dr. Gururangan...pediatric neuro-oncolgist
at Duke...My son David was dx with GBM in May 2003...right temporal lobe...he
had a 'complete' resection...6 weeks of radiation...and temador...almost
a year to the day his MRI (my son gets them every 6 weeks) came back...same
locale, right temporal lobe...this time we went to Miami Children's Hospital
and he had the gliadel wafers inserted...this is about the time I contacted
David Bailey...and sometime between the 2004 hurricanes here in Florida...my
son and I flew to Duke for just an appointment/evaluation...Dr. G had
Dave's MRI's/reports etc....he proceeded to put Dave on a new protocol...CPT-11
and 100mg of tamoxifin a day....David gets infused 4 weeks on 2 weeks
off...this second protocol started back in Sept 2004....it's approx.
an 18 month trial...Dave continues to get MRI's every 6 weeks...he is
now 13, goes to school (7th grade) skateboards and we have only noticed
small cognitive changes...reading...he cannot always retain what he reads....he
went from being advanced to 'regular'....nothing anyone would really
notice, unless you were his Mom...:)
|Rodney Frawley - Bio|
Hi my name is Tamara Frawley; recently my husband was diagnosed with brain cancer...Glioblastoma or GBM. My husbands name is Rodney Frawley and he is now 28 years old 26 at the time of diagnoses, we have a 2.5 year old baby girl named McKenzie Marie and another baby on the way due at the end of August 2010. Let me tell you a little bit of Rodney’s story.
In February of 2008 Rodney started to have headaches, we thought it was coming from his tooth so we had him in to the dentist and he said that he had and infected tooth. The dentist gave him some meds and sent him home, a week later his tooth felt better but he still had a headache and it wasn't going away so I sent him to his PCP and he said that he had tension headaches again he got some meds and was sent home. The meds were not helping so two days later I sent him to the chiropractor and he was adjusted but still NO relief. So I took him back to his PCP and told him that Rodney has been in bed for over a week and that every time he eats or tries to eat he is throwing up and that he could barely walk into his office without stumbling around. I stated that Rodney is VERY athletic and that he hasn't been going to his games and that everything that is going on is not like him. His doctor sent him to the ER for a CT scan and to get him rehydrated. He had a CT scan done and the doctor stated that they found a mass on his brain and that a neurosurgeon would be in to talk to us. The neurosurgeon came in and said that he was going to do brain surgery on Rodney tomorrow. We were all in shock!!! The next day 2-29-08 Rodney was going into surgery to have a baseball sized brain tumor removed from his right frontal lobe. The surgery was a success and they were able to remove all of it except the microscopic cells that they could not see, they said about 99% was removed. The doctor said at the time that it was possible that Rodney had testicular cancer that spread to the brain but his scan came out clean for testicular. A few days after surgery we were hit with the scariest news that anyone could receive. The doctor came in and said "you have brain cancer, grade 3-4 Glioblastoma and I give you 12-18 months to live", our hearts and lives stopped and that moment, I wanted to just die. The doctor told Rodney that it was doubtful to get the cancer in remission and that he would have to fight but it was a losing battle, he told us stories of death and people dying from what Rodney has, then just as easy as the doctor walked in our room he walked out and left us to deal with the bomb that he had just delivered.
A month after we got home we moved in with Rodney parents because Rodney can not work due to he lost half of his vision from the size of the brain tumor that caused part of his brain to have a stroke. Rodney has also gone through 6 weeks of chemo/Temodar and radiation combination for 30 treatments and he continued doing chemo after that every 28 days (5 days on and 23 days off) for 1 year ending in April 2009. Rodney has just had an MRI on March 3, 2010 and it came back as stable with NO CHANGES, such a blessing. On March 3, 2010 was Rodney’s 2 year anniversary of his diagnoses and is doing well. He will continue to do MRIs every 3 months for 2 years after his last round of chemo and then will go to MRIs every 4 months for 2 years and as long as they all come back stable his MRIs will get further apart with time. With the help from the Lord, GREAT doctors and a positive attitude anything is possible.
We stay positive and we put Rodney in the hands of the Lord because if anyone can get him through this it would be Him. Rodney is strong willed and determined to be here for his daughter and the new baby on the way so everyday that he is here is another day won.
This website gave me such hope that my husband was going to have a chance to beat this terrible disease. Everything I found online was bad the statics were bad, the news on it was bad and it was hard to find something positive on GBM until I found this website. Please believe that it is not hopeless and that anything is possible.
Rodney with his wife Tamara and daughter McKenzie
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