I am Nicole Giorgio - I am 33 yrs. old. I was living in Austin working as a Speech Pathologist and also at Texas School for the Deaf I was 3 days from leaving for the Peace Corps when I was rushed to the hospital to have a tumor removed from my brain. It is a GBM and I was diagnosed on Oct. 5th of last year. Due to my prep for Peace Corps this left me with no insurance, etc. I continue to plan for fundraising and doing some work in drawing attention to the fact that people - once they are granted disability are often left without medical coverage by the government. In addition there is a 24 mo. wait until Medicare is available unless you have ALS or In Stage Renal Disease. I find this unacceptable.
Since my diagnosis I feel as if I've become a different person: enjoying the moment more, working through things..and generally trying to figure out what comes next for me. I was quite the workaholic and hardly ever looked up from the "grindstone" to "smell the roses."
Since I have been recovering and doing much to navigate through red tape, etc..also researching things like your group! I am thrilled to find a group for younger people and want very much to be included!
I am Marci's husband, Kevin, and she has asked that I add her story to your website as details sometimes fail her now.
Marci is a 36 year old mother of 2 boys (ages 6 & 9) and 1 girl (age 8). In 2002 she worked at Home Depot and I at Research In Motion. We had our health and promising careers.
Marci was experiencing short term memory loss in the fall of 2002 along with somewhat strong mood swings and headaches. We attributed these to many things, inner ear inbalance (doctor), job stress and my layoff from RIM.
On January 12th 2003 we discovered what the real problem was..... Marci suffered a severe grand mal seizure. I learned within hours that she had a tumour and within days that it was GBM 4. Our life would never be the same.
We discovered that Marci has 3 tumours; 1 on the left frontal lobe, 1 on the right temporal lobe and another above the cerebelum. The only tumour that was operable was the right temporal lobe, where a baseball sized growth was removed in Feb 2003. They got 60% of it.
After recovering from surgery, Marci went on 6 weeks of full cranial radiation simultaneously with temezolomide chemo. The thought being that it would be more effective this way. The hospital is 1 1/2 hours away so we tried keeping her in residence during the treatment. This did not workout so well so she was hospitalized during the 1st week and for the duration of the 6 weeks due to being extremely nauseated, very weak and still suffering from headaches.
After the 6 week treatment Marci came home and continued chemo from there, as temozolomide is in pill form. The chemo regime started out as 5 days on chemo and 7 - 8 weeks off. she started out taking 390 mgs/day and went down to 180 mgs as the side effects were too great. she has since moved up to 200 mgs and will likely increase the dosage with the next round (Jan 12, 2004) as she is responding much better to it. No more nausea !!!! Her regime is now 1 week on and 4 weeks off chemo, which will continue for as long as positive results are observed. Zofran has been the anti-nauseant.
We tried as much as possible to continue living a "normal" life in 2003. We celebrated my brothers wedding and our daughter's 1st communion in May; we went to Darian Lake amusement park in June, a week at a friends cottage in July, went to Disney World in September and had a great xmas with family.
We have had an enormous amount of support from family, friends and complete strangers. The trip to Disney was funded by an anonymous wish foundation.
Marci has had a very positive outlook throughout most of 2003 and although it has been difficult, due to the medication and cancer, she has fought hard to keep a positive frame of mind and live as full a life as possible with our children. You should have seen the unbridled joy she exhibited when she met Mickey Mouse
The MRI's throughout the spring and summer have shown no growth in the tumour and the last two (this past fall) have shown a slight reduction in the tumour's size.
Even with this positive news this last year has caught-up with Marci and shortly after xmas...looking to the new year, she has exhibited a fair amount of what she calls "stinkin' thinkin'" and has looked to others on the YASG website to help provide postive energy. She fears what the future holds for her and has been overwhelmed by it.
Marci starts her next round of chemo on January 12th 2004 and will have another MRI in early Feb.
MARK:
Hello, my name is Mark
W. Greenleaf and I am 28 years old. I have brain cancer.
SYMPTOMS:
It all started one morning in March of 2002 when I awoke with a headache.
I took a few aspirin, the headache went away, and I thought nothing
of it. Again the next day I awoke with another headache, I took a
few aspirin, and the headache went away. This continued for a couple
of weeks; every morning, a headache in the back of my head, just
above my neck, throbbing until later in the day.
Finally one morning I woke with a headache of such intensity that I actually had to pull over on my way to work as I couldn't even see ahead of me. On this day I decided that it was time to see a doctor, so after work I went to the urgent care near my office. I was diagnosed with a sinus infection and given amoxicillin to take care of the infection-induced headaches.
I took the pills for a week and still my headaches did not go away. So I went back to the urgent care complaining of increased pain and pressure in the back of my head. At this point the pain was so intense that it felt like someone was pressing an ice pick into my skull. The doctor took another x-ray and still only saw a slight infection of my sinuses. It was then when I was directed to the emergency room, as a small infection could not account for such headaches.
On Sunday May 12, 2002, I arrived at the ER and reported my symptoms. I was immediately sent to a CT scan. At about 11pm my CT started and I lay motionless on a table for what seemed hours. I met with a doctor shortly after to hear the results. I was told I had a tumor near my lower cerebellum. I asked about a million questions and was told that the tumor appeared to be encapsulated, meaning it hadn't grown "tentacles" into other brain tissue. Nevertheless, the doctor said I would need further tests such as an MRI and would likely need surgery soon. I was admitted to the hospital right away.
I spent the next two nights in the hospital being woken up every few hours to perform simple physical tasks and have blood drawn. I received another CT scan followed by an MRI. The tests only reinforced the original CT; there was a tumor, but that was all they could say at this point. Surgery was scheduled for three days later and in the meantime I would be able to go home since I was not exhibiting any physical symptoms of the tumor interfering.
911 -
I was released from the hospital, went home, and had a nice dinner with
my girlfriend. We watched a movie and went to bed. When I woke up
the next morning, I was in the most intense pain imaginable. I felt
as if I were on a torture rack. My body felt paralyzed as I was unable
to move because of the pain. It seemed like hours as I lay there
screaming with pain and becoming delirious. My girlfriend called
911.
The next thing I remember is waking up in the neurological intensive care unit at the hospital. I saw nurses and doctors all around, and I was told that the tumor in my head had hemorrhaged. This is what had caused the intense pain. The doctors said the hemorrhaging was very rare and completely unexpected. If it weren't for the quick action of my girlfriend, I could have died. I had been rushed into emergency surgery in the middle of the night. I don't remember most of this day; I only remember the pain. Now though, the tumor was gone. So was the headache.
After some recovery, I was transferred to a new room and was able to meet with the young doctor that performed the surgery. He told me that the surgery went well and that he was able to remove virtually the entire tumor, something that does not usually happen because most tumors have already entwined with other brain tissue by the time surgery is performed. Also, the tumor had been "hanging" in the empty space by my third ventricle, allowing it to be more easily and cleanly incised. Most people having brain tumors removed are left with far more tumor remaining since it would be too risky to remove it completely from sensitive brain regions. Much of the time GBM tumors are in, and interfere with, speech or memory or movement regions of the brain. My tumor had been very near my respiration and circulatory centers.
CONFIRMED DIAGNOSIS:
I regained most of my strength and was able to walk around the hospital
with little effort. The nurses and doctors were amazed at how quickly
I recovered, and we were all happy that I was exhibiting almost no
signs of defect from either the tumor or the surgery. My family and
friends hung out with me at the hospital for the two days it took
for the biopsy results to be ready. We were mostly confident and
relieved that everything had been working out so well. Two days after
the operation, on that Friday, the biopsy was reported to me. The
tumor that was taken out of my head was malignant. It was Glioblastoma
Multiforme (GBM), a Grade Four tumor—the most aggressive and
deadly type. The adjective multiforme means that the tumor contains
a mix of different kinds of cells, which may each respond to different
treatments. On the scale that doctors use to rank or "grade"
brain tumors, a GBM is a grade IV tumor, which means it reproduces quickly,
is invasive, contains necrosis (dead cells) and builds its own vascular
supply. I was given the usual prognosis of 6-12 months and told that
many people don't bother to treat this type of brain cancer.
I was diagnosed with my inoperable golf-ball sized GBM on April 1, 2001. at the age of 28.. I do not seem to have a strong enough appreciation of how lucky I am. I understand that being diagnosed with a gbm is like being struck by lightening twice in one lifetime (first being diagnosed, second, surviving.) but I would just like to tell those newly diagnosed readers that it is possible to survive this. It takes more patient, persistence and determination than you have ever needed in the past, but it is possible to live with this thing. First, you must educate yourself about every facet of this disease from treatment options, biologic behavior tand statistics. There is no substitute as the patient for education. Your doctors do NOT know everything, nor can they tell you everything. Also, finding a pier group is important, you will need to find people in your rough age group who are going through the same things. If only to have a class of friends who know what you are going through and dealing with. They will become indispensable as you travel this yellow brick road.There are those of us "long-term" survivors who c an beat the odds) I am the first to acknowledge that others who have traveled this road before me are the real heroes, people like David Bailey, and Ben Williams, who god willing will continue to suvive and provide inspiration to all of us. I hope that as you read this that you will find some hope in knowing that this disease can be viewed as a "wake-up" call and that it allows you the opportunity to reevaluate your priorities in life, and as I call it, you can begin to define your "new "norm" because your life has changed at its' very core, and you must learn to accept that. It will take some time to grow accustomed to this,, but you will. Persistence is the key, and just realize that you need to live every day to its' fullest. I find it important to talk with friends, family, etc. about my situation because nobody really understands it or can identify with it.. And know that some never will. And when you come to accept what has happened, you can begin to be comfortable with living your life the way you want to. Rather than from MRI to MRI. I know that sounds easy to say, but hey, as the cancer survivor John Schrader says
Give my regards to the man I used to be
I could pick him out of a crowd of a million me's
This time around, I swear to god I won't cry
Just sit beside me for a little while
I never knew fear like it knows me know
Rolls down my back but it gets stuck somehow
I can't turn this off right now and it's killing me
Healed with a sea of faces, it's the pill in me
Sometimes I hate you ‘cause you left me here
I bear your name and a legacy of tears
I dreamed I was the hero of the day
Then daylight smashed the dream but the hero's OK
It all began in November of 2004. I had been having headaches and some word retreival problems but it was also a time that there was alot of stress happening in our life. So, figured that was the cause. I am a physical therapist and I was filling in on some Saturdays each month. On November 27, 2004 I went in and partway through started having a worse headache and not feeling so great. By the time I went home at noon, I thought I was getting bad flu. Went in and told my husband the kids were all his because I felt terrible. I went to bed and later towards the evening kept feeling like my head was going to blow up in pain and kept vomiting. My memory ended there for the next 24 hours. My husband thought I was just pretty sick until towards morning I became unresponsive and in a stiff position. I was taken to ER by ambulance and told after seizures were somewhat under control they did CT scan and then MRI. At that time my husband had to make the choice of
emergency surgery to save my life. The neurosurgeon took out 40-50% of the tumor at that time. When I woke up they had to tell me what happened. My family all lives a distance away but standing there were my sister and two of my brothers. My diagnosis: Glioblastoma 4. The location of the tumor was mostly left temporal lobe, some frontal, the size of an orange according to the surgeon. After further tests and short time (9 days) of healing, he did a planned surgery and was able to remove total of 75% of the tumor. It was disappointing to have that much remain. We made it through Christmas anxiously awaiting the next treatment. I then had IMRT radiation and Temodar daily for 6 weeks. I was given a break for 6 weeks (made me nervous but they said it was best decision at that time). Then I began the 5/28
days Temodar. Thank God the company that makes Temodar has a wonderful program that helps receive the Temodar. My insurance wouldn't cover it and our finances were pretty difficult at that time. (I guess I forgot to
mention that we have five sons who are now 7,12,14,17, and 19!) The company sent the Temodar as scheduled each month. After awhile it became covered by my insurance. I was kept on Temodar for 6 months. All of MRI's were stable! We thought Temodar would be for 12 months but my wonderful neuro-oncologist helped us understand and accept the decision to stop at 6 months. She felt that because my MRI's were staying stable that it was not beneficial to stay on the Temodar when I might need it again at a later date.
Since treatment, I have been very blessed with gift of life. I am now at 31 months of survival. It changes how you think of things in life. I have to admit that I still have fears of return. It is in my mind every day even though I try hard to set it all aside. Anti-depressant medicine has been a good help. I have some deficits from the areas of surgery and treatment. I have right hemianopsia (that means can't see to the right of your vision field.) That is probably the most frustrating thing because it means I am not allowed to drive. I have some short term memory, word retreival, and name retreival things. My ear likes to ring at me but I can usually block that sound. My hearing loss on the left is mild but I can't tell what my kids are saying from another room in the house. I hear them but need them to be in the room where I am to get it right. Oh yea, I'm a bit clumsy--I seem to meet up with surfaces so my 7 yo and I share about our bruises. My most recent MRI was in May, I will have another in September.
A strong encouragemnt for me has been my faith in God and the support of those who share that. I was blessed to make it through really hard days by David M. Bailey's gift of music. I still enjoy that alot and often listen on my morning walks! And last but not least, the YASG web site has been a great resource and encouragement. My whole family (all of'em!) have been wonderful with their love and encouragement and support.
My story of 15 years of survival:
Live and love in light of eternity
Rev. Timothy W. Herron
Founder & President
Overcomers inc.
13333 SW Freeway Sugar Land TX 77478
281-2659108(office)
832-2936297(cell)
www.overcomers.org
Hello! My name is Shan Higginbotham. I am writing on behalf of my husband, Ken. Ken was diagnosed with a Glioblastoma Multiforme brain tumor the week of his 34th birthday in June of 1998. I read your stories with great interest, sadness, hope and inspiration all rolled into one. I'd like to add a little hope and inspiration of my own if I may.
Ken went through two surgeries, 34 radiation treatments, and over a year of chemotherapy. That was a very long two year period. But I am very happy to report that we are two months away from our 4-year anniversary of being cancer free!!! We know that is almost unheard of with GBM. We feel so fortunate and blessed by God to be able to share this with all of you. There is hope! Don't give up the fight!
As I write this, my husband is gone to an umpire's meeting. He is a baseball, basketball, softball, and volleyball official for high school. I'm very happy to report that he has a game to officiate Thursday and Friday. In the beginning I thought we would never be "normal" again. But we are living a very "normal" life now with our two beautiful daughters, aged 5 and 7. IT IS POSSIBLE! I would love to hear from some other survivors out there.
Sincerely,
Shan Higginbotham
In August of 2000 I was diagnosed with a GBM IV after having a seizure (my only symptom). I am a 42 year old woman who is an elementary teacher.
At the time this happened, my family (husband Gary and two children, son Nick now age 13 and daughter Leslie now age 11) was moving to a new town where my husband had taken a job transfer and I had accepted a job teaching 2nd grade.We still were not completely moved in and school had not started yet.
After initial diagnosis, I had surgery, followed by chemo and radiation (together). I tried to go to work during this time, but the radiation really brought me down, so I gave up teaching during the 2000-2001 year. My last treatment was in August of 2001 and I taught 3rd grade during the 2001-2002 school year, with no sick time other than my regular appointment days for follow-up MRI's, lab work, and doctor visit, all of which turned out with positive results.
Since my diagosis and treatment, I have had no other problems. The doctor who performed surgery told my family that I would most likely be back in within the year for an additional surgery. The prognosis for me was not good. While all of this was going on, I never once thought this was my time to die. When my family and friends reacted as though this was an awful situation , I felt all along that everything would be okay and I would survive this with no problems. And so far, that is what has happened.
I realize that the tumor can come back at anytime, but I also realize the this can be beaten. I truly believe that God has been my saving grace, along with very qualified doctors.
I would love to hear from other people with this same illness. Even though I have a very positive outlook, I still know that there may be things that I may need to face eventually, and it is a very scary thought. Having others to talk with who have these same fears, helps to ease these emotional upheavels.
Thanks for letting me share my story.
Mary Holtkamp
On July 17, 2001, after many years of problems, I had a hysterectomy. I had a huge ovarian mass (47 pounds) removed and tested for cancer. It came back borderline positive for epithilian ovarian cancer which meant it was malignant, but completly removed with the tumor and had not spread. I was thrilled. Not only did my gynecologic problems resolve, but during that surgery, I lost 53 pounds in just a couple of hours. I felt fabulous!! I was going to be off work for 6 weeks and could then resume normal activities. During the course of my recuperation, I began having headaches. Prescription Motrin seemed to work at first, but the pain would gradually worsen. I spoke to my GYN doctor about them, and neither of us could explain. Maybe it was the shock to my system that the surgery triggered the headaches, maybe it was a latent effect from anesthesia, maybe I needed my eyes examined. I made the mistake of saying they weren't so bad and blew them off. I felt so good about myself that I figured a little headache now and then was not so bad. I went to my doctor for my final post-op visit and told him I felt fabulous and was ready to return to normal activities. That was on a Thursday. On Friday, I went to have my eyes examined and was told I either had optic neuritis or a brain tumor. Laughing, I told the doctor that I had already had my quota of tumors (one per customer, please) and he referred me to a neuro opthomologist at the Kresge Eye Institue, a world famous facility located in Detroit. It would take a few weeks to get in, but I was not worried.
My husband and I celebrated that weekend. I felt good - better than I had in years except for the headaches. On Sunday morning however, I woke up in total agony. I got out of bed to take a Motrin and began non-stop vomiting. I had previously worked in hospitals as a unit clerk and knew enough about medicine to be dangerous. I also knew that something was drastically wrong and I would be making a trip to the ER. I woke my husband up and told him to get dressed. I thought I was having a stoke. I somehow managed to take a shower - I couldn't go in smelling puky. In the shower, I tried to calm myself down and think clearly. I got out and I think managed to put on my robe when the vomiting began again. That was the last thing I remember. It was October 9, 2001. When I woke up, I saw the television showing horrible scenes of plane crashes. Thought it was a Bruce Willis movie. Then I realized I was not home. I was in ICU and the show I was watching was the World Trade Center disaster. Next I saw my entire family, my friends, and doctors all at my bedside. This I knew was not a good thing. I remember asking if I had had a stroke. I remember hearing the words brain tumor, crainiotomy, options, cancer, and then I remember freaking out and having trouble breathing. My husband told me later that I was sedated and everyone was asked to leave. When I was calm enough, the neurosurgeon and my husband explained to me that a Cat Scan showed a brain tumor and that I would need surgery to remove it. It was large and located on my right occipital lobe that affected my vision. Surgery was done on September 13th and that was when I learned I had a GBM grade IV. I would need radiation therapy and chemo, but was given 6-18 months to live. This could not be right. I am only 47 and we had a 25th wedding anniversary in January.
I went through 6 weeks of daily radiation thereapy combined with chemothereapy. I was not eligible for any clinical trials due to my previous ovarian cancer scare. But Temodar was new to the field and I was put on that in conjunction with steroids, anti-seizure meds, pain and anxiety relievers, etc etc. It took a while to regulate all the meds, and after 12 days, I was released home. Radiation did not hurt at all, but I was severly depressed. I lost my hair in a pattern that resembled railroad ties and opted to shave the rest off. I was terrified of taking the Temodar, as chemo drugs have such a bad reputation for making people sick. The temodar had virtually no side effects and I was thrilled. However, the Decadron (steroid) made me swell up like a balloon and turned me into a raving loon. We still are not sure if it was the Decadron alone, or if a combination of the fact that I was thrown inot menopause just a few weeks earlier. The Decadron was to relieve the swelling on the brain and therefore a necessary evil. We also found that I was having difficulty with Dilantin, and was put on a combination of Keppra and Neurotin to control the seizures. I was drugged up pretty good. I slept about 20 hours a day. After a period of adjustment, I felt up to trying to return to work. My husband's job does not have inusrance benefits, so I had to keep working to keep the Blue Cross in effect. My employer was the kindest and most generous man. I work for a small family run business and they treated me like family. Even though I was unable to work a full shift, the continued to pay my insurance. That was one less worry I had. After a few weeks of working a limited schedule, I was feeling a little queasy one day and went to the bathroom. I was trying to ccall my husband to come get me and when I woke up, I was back in the hospital. I had another seizure at work and they called 911 and my husband. Another MRI showed increased swelling and my steroids were adjusted. Soon I realized that working was out of the question and I had to apply for disablility. My tumor had left me legally blind in my left eye and limited vision in my right. Driving now is not really an option. We had to cobra our insurance (pay the premiums) on our own. Between my loss of income and the cobra payments, we would soon be bankrupt. My generous employer paid my premiums and I will never be able to return that act of kindness.
After 9 months of Temodar, which was the recommended length of treatment, I was put on BCNU chemo IV. In order to protect my failing veins, a port was installed surgically in my chest. About a week or so after the port was implanted, I broke out in what appeared to be blisters on my face, chest arms and upper torso. Shingles. Yet another drug. They cleared up but left me with a very painful left arm. Evidently the shingles settled on some nerve endings in my arm causing the pain. Some studies indicated that Neurotin could help those nerves, so my dosage was increased. Soon the pain diminished to a tolerable level.
Soon, however, the insurance went up 20%. My boss could no longer afford to pay the premiums, so we had to assume that debt. We were able to pay the first month, but at $1000 per month, we could not afford more. We did not qualify for Medicaid or other assistance, so we were on our own.
My last MRI showed no new growth so after careful consideration, we decided to take our chances. I stopped all treatments and medications except pain and anxiety relievers. A few days before our insurance ran out, I filled all may meds in the event I decided to start taking them again. I had been approved for disablility and Meidcare, but Medicare would not become affective until January 2004. That meant about 5 months of no insurance coverage at all. We were scared, but something amazing seemed to be happening. I actually felt better off my meds. I could think clearer. My legs were weak and I had difficulty walking, but my mind seemed to be fairly clear. In the 2 years since my diagnosis, I was finally drug free. I would take an occasional Vicodin for pain or a Xanax for my nerves, but overall I remain drug free.
It is now New Year's Eve 2003. Tomorrow I will officially be a Medicare recipient. I have lived with this cancer for 2 years, 3 months and 22 days and I still keep on ticking. I don't know why. I do know that I have gotten to meet my grandson born on September 9, 2003. On the 2 year anniversary of my initial encounter with GBM. I did not think I'd ever get to live to lay eyes on him and that was my biggest regret about being terminally ill. I still have a lot of issues with the whole situation, but if I can stay busy of mind or with my hands, then I don't dwell on it.
Waking up to the terror attacks in New York really helps me put my situation in perspective. Yes, I am sick. Yes this will probably kill me soon. But my pain is minimal compared to the loss suffered on 9/11. I have been lucky to have had my family and friends around me supporting me. Those victims never had a chance. I have my grandchildren Autumn and Benjamin and I am truly blessed. I have a wonderful husband Bob and 2 dear daughters Courtney and Christi and Art my son-inlaw is the son I never had. A wonderful marriage, a happy family and the fact that I have outlived the odds, what more could a person want.
To all other GBM victims, survivors, and support team members, I wish you a blessed New Year and my prayers.
Candace Jackson
Warren Michigan
Email: Goliathandcandace@hotmail.com
My husband, Mike who is 46 years old, was diagnosed with a GBM 14 months
ago. At the time of diagnosis, we were told that he had 6 months to a
year of life left.
In early January of 2006 he started having vision problems and mild headaches.
The opthamologist said he needed new glasses. After a week or so he started
to have flu like symptoms. A few days later he became disoriented. I
took him to the Emergency room where is was diagnosed with a mass in
his brain. A day later he had his first craniotomy. During surgery the
surgeon inserted chemo wafers. He recovered quickly and was back to work
with in a month. After a few weeks he started 33 days of radiation.
Soon after radiation, Mike started showing left sided weakness and confusion.
The MRI showed an area of growth close to the surgical site. He had his
second craniotomy. Several days later the pathology report was negative.
The new area was dead tissue caused by the radiation. That was a relief.
At the end of radiation he started an oral chemo, temador. He tolerated
that well and the MRI's were clear until Sept 29th that year. His oncologist
suggested waiting a couple more months to see if the area grew. I insisted
on another MRI to be done in a few weeks. It is called a spectroscopy.
Sure enough the spectroscopy showed more grow. Gamma knife was done on
Nov. 8th. Mike started another chemo with in a month. BCNU and CPT 11
were given I.V. for 4 weeks. Then another MRI was done towards the end
of January 2007. It showed more tumor growth. This one was bigger than
the first one a year ago.
He had his third craniotomy Feb. 6 2007. His recovery was better than
the other 2 surgeries. He was out of the hospital within 48 hours! Again
he had the gliodel chemo wafers inserted. He continues to be on steroids,
dilantin (although he never had a seizure) and a host of natural pathic
supplements.
The next course of treatment will be avastin. It is an antiangiogenisis
drug. It stops the feeding of the tumor and has been shown to be affective
in about 65% of glios. It is usually given with CPT 11 every two weeks
I. V.
Mike is currently doing well. He does all his daily activities with out
help. Because the tumor affected his eye sight, he cannot safely drive.
But he does read and use the computer. He will be returning to work next
week part time.
These last 14 months have had many ups and downs, but Mike remains very
positive. He joined a tumor support group here in Portland, Oregon. He
says he loves helping other people and of course they are helping him
as well.
I am a 24 year old male living in Seattle.
Recently I was diagnosed with Glioblastoma Multiforme. The first clue
that something was wrong with me was a focal seizure. I was at a friend's
house watching the Seahawks game when suddenly I began having involuntary
movements of the jaw. I tried to hide this from my friends. Later on
that night as I was driving my friend home i realized it was difficult
to speak. I knew what I wanted to say I just couldn't say it. I also
noticed weakness in my right hand. I wound up crying uncontrollably.
My friend said it was probably just a panic attack and I wanted to believe
him. I wound up working the next two days (this was right before Thanksgiving
2005) even though I could barely speak and my right hand was useless.
Finally, the day before Thanksgiving, I went to my Mom's house and she
immediately noticed something was wrong with me.
I was told in the original pathology report that it was a Primitive Neuroectodermal
Tumor (PNet), which is extremely rare in adults. The tumor had grown back to
its original size within a week and a half of the first operation and I was having
difficulties with my speech and hand again. I had a second operation which included
brain mapping to resect as much of the tumor as possible. Then I had to wait
on a second pathology report. Apparently, my case is unique. After sending a
sample to Johns Hopkins they still couldn't figure out what it was. They said
they would not rule out the chance that it was a PNet but it would most likely
act like a glioblastoma, so they would treat it like a glioblastoma. I am now
on my second day of radiation. I'm feeling fine, no more weakness in my right
hand or difficulty speaking. The main reason I wrote this is to get some feedback
from others who have gone through the same thing.
Sincerely,
Jeremy Johnson
My name is Melissa Mariman. I am 30 years old. I am an anesthesiologist and I just finished my residency training in Southern CA the end of Feb 2004. Finally I was able to move back to the Seattle area so my husband and I could stop commuting. As a gift to myself I took some time off between residency and starting work. I took my mother on a trip to London the first part of April 2004. This is really the only tip off that something may be wrong. It was a cold day there and my hand was a little numb. I had trouble turning a knob on the faucet with my left hand. My fine motor coordination just seemed a little off in that hand. Other than that, the only symptom I had had were some mild recurrent headaches that were relieved with Advil. What resident that works long crazy hours doesn't get a headache now and then????
When I returned home from London I saw a hand surgeon I knew, and followed up with a neurologist to rule out carpal tunnel. As for my mild headaches, they thought maybe the start of migraines ( I did fit the profile)--but they just weren't that severe. After nerve testing, they found a 25% decrease in function of my radial nerve in the left hand. I'd probably slept on it weird, but to come back if it wasn't better in a few weeks.
On Friday, June 25, 2004 I worked a full day doing anesthesia with no problems. The next day, Saturday, June 26 I woke up with a headache and just didn't feel well. It was a warm day and I threw up on the way home from the store. That night I gave myself something for the nausea so I could at least get some sleep. The pain was moderate, but not incapacitating.
Monday, June 28 I called my primary MD and told her I thought I was having my first true migraine. She saw me at 10 am and had me in the MRI by 12 noon. As I was coming out of the MRI the tech came and got me to take me to the radiologist that was waiting with my husband in the dark room. That is when they told me that I had a right parietal tumor. It really wasn't a surprise to me because it all just made perfect sense in my medical mind. I was whisked off to the ER where I met the first neurosurgeon. He told me it was inoperable because of the location on the motor strip.They could do a biopsy, but that was it Thankfully my primary had set up an appointment with an oncologist, When the oncologist asked me what the surgical option was, I said there wasn't any. She excused herself and told me I had an appointment in one hour at U of WA with someone who only does brain tumors.
Thursday July 8 I had surgery via extensive MRI mapping to remove the tumor. It has been classified as a successful gross resection of the tumor. I spent a couple days in ICU and went home July 12.
At my post op check July 14, I found that they had presented me at tumor board that day. The path report was just as we thought it would be--- GBM Grade 4. My surgeon told me that I had an appointment downstairs right now. with the neuro-oncologist and the radiation oncologist. I was given my treatment options and set up for all the imaging studies to start radiation, I start chemo( Temodar) and radiation treatment Thursday July 22 for a six week course.
My utmost thanks to the amazing team of medical professionals I work with--it has restored my own faith in medicine!!! And a super huge thank you and I love you to my family and friends---you guys are the ones carrying me through this!!!!!
This is me ( Melissa Mariman ) and my husband ( Jeff
Hensler)
at Mountain Home Lodge, WA
Family picture (brother, sister in law and niece)
just over a week post surgery
Picture of my best friend Alex and myself in
Santa Barbara, CA during our residency
On October 27th of 2001 I suffered a series of gran Mal seizures that put me in stasis. Thanks to my precocious 7 year old daughter, 911 was dialed and I woke up the next day in the Neuro ICU of Poudre Valley Hospital (1 hour to the south-- I live in Laramie, WY).
I visited with the neurologist there who diagnosed a likely low-grade astrocytoma. I then visited with Dr. Kevin Lillehei in Denver a few days later, who confirmed that the mass had the appearance and activity of a low-grade glioma. As it was in my right frontal lobe (a "silent" area of the brain), surgery was scheduled for 11/15/01. The growth was successfully removed (radiological GTR), and I began rehabbing about a month later. The pathology showed that it was an Oligoastrocytoma grade 2 (mixed glioma) that did not have a lot of markers that would point to future aggressive activity.
I stayed on Dilantin through June, 2002, simultaneously engaging in a rigorous exercise campaign (I went into the hospital at around 280-- knowing that these tumors recur, I vowed to myself that if I had to go in again some day, I'd be in shape). I lost 50 pounds through exercising and sensible eating. I suffered another seizure on 2/22/03, ironically again in the presence of my daughter. I was sitting in a cheap plastic chair poolside at a Comfort Inn reading Emily Dickinson when I pitched forward and broke my fall with my face (I broke my nose, ruined my septum, left orbital bone, suffered a concussion, bruised my shoulder, and needed sutures in three different areas on my face-- I guess weighing around 230 was still too much for my face to take!) I awoke in an ambulance headed to the Casper Medical Center where a Cat Scan did not reveal any gross changes in my neuro anatomy.
A week later I scheduled an MRI with my neurosurgeon in Denver. The MRI revealed an enhancing lesion that looked, radiologically, like an anaplastic recurrence of my mixed glioma. We scheduled surgery for two weeks later. I had my surgery last Tuesday (3/18/03), where the doc removed the new tumor, plenty of margin (re: brain), and left gliadel wafers in what was once my right frontal lobe. The pathology revealed that the tumor had progressed from an OA 2 to a GBM4. Oddly, I'm feeling lucky. There have been no cognitive or physical deficits. Anything that has grown in my brain has been excisable. I have a great support group starting with my wife and child and moving through my family to my friends and co-workers. I'm aware that my sanguine feeling can change in a moment, which is scary. But we're all facing the fear of the immediate future with this beastie.
My name is Tammy Freeman
and I am the daughter of Marilyn Martinets who is 49 and will be 50 on
Aug 30. This is how her story goes. On Christmas eve of 03 my mother was
in the kitchen and had her left arm pretty much go crazy on her. Then
it happened again on the 26th of December. That day she went to Round
Rock emergency room where they did a MRI and diagnosed her with having
seizures due to a brain tumor or stroke. They sent her home saying this
was an expensive babysitter.
Three days later she had another MRI where they said there was still a
mass and that it hadn't changed and they would do another MRI in 3 months.
She saw Dr. Kemper a neurologist who said I don't even think that this
is a tumor if anything at all because it was so small.
After 4 different seizure meds she kept telling her Dr. Kreal I really
think there is something wrong with me and it was in my head. She didn't
think it had anything to do with her meds. Well the last medication they
gave her she had a really bad reaction and was not feeling well and losing
the ability to walk. Mind you through this month she went back to work,
working overtime and traveling. On Sat Jan 31st I took my mother to the
ER because she just was not feeling well. He said I can't keep you because
I have no reason, she said pls call my doctore because I have something
in my head they don't know what it is. Dr. Mills then called Dr. Kreal
and Dr. Kreal proceded to tell him it is a benign mass and not the reason
she is not feeling well. Hence the current meds she began to take. They
sent her home saying nothing was wrong. On Tuesday Feb 3rd my mother called
the dr and said I am feeling really week I don't want to take the meds
it is making me feel bad, he said take another one you don't have enough
in your system, she waited for my grandmother to get there before she
took another one and the reaction was even worse. She couldn't even walk
to go to the car to get the the emergency room so called 911. The took
her to ER where once again they blamed it on the meds.. but took a blood
test and said oh you have Mono.. So kept her overnight, then on the 5th
at 3:30 am my mother had a grand mal seizure that made her lose the ability
to mover her left leg, then another one that afternoon and lost total
movement of her arm and leg. Then they said well your MRI shows you have
a very large tumor 4cm in your brain and it is a Glioblastoma and this
is very bad. Our surgeon is on vacation so we will have to transport you
to Brak. I asked him if she would make it overnight and he replied oh
this won't kill her overnight but she only has less then a year. With
2 daughters and 4 grand children still very young I lost my mind. She
was then transported to Brak into ICU where we met who I believe is an
angle and his name is Dr. Hummel. He explained so many things and they
did the surgery on Feb 9th, she came through the surgery well, he removed
all the tumor that he could see but told us this is a High Grade Glioma,
GBM and I went in aggressively because it was an aggressive tumor.
Feb 12th she was transfered to rehab, where she began working on her rehabilitation
of moving her body. They didn't think she would feel, her face would droop
and they for sure didn't expect her to walk anytime soon. I am here to
say that Georgetown Hospital in Texas is WONDERFUL!!!!. They wanted her
to be able to move in a wheelchair when she was released, well...... mom
said screw the wheelchair I am going to walk out of here.
ON March 4th my mother was wheeled out of the rehab center but walked
into her house where she now lives at my grandmothers. She is walking
she is talking she is doing things on her own. She is not at 100% but
well on her way. She has been doing radiation since Feb 19th, she has
a total of 33 doses and also taking 160mg of timidar. She is taking very
well to the treatment, feeling good and has only lost her hair where they
are treating her. She is almost done with radiatin and chemo will eventually
turn into only 5 days and then rest for 23. I hope and pray that I will
have a story like you all. My mother is strong and very positive.
My mother is currently being taken care of by her parents Reva Nell and
Douglas and is getting lots of assistance from my sister who luckily lives
across the street. She is being very well taken care of by my family.
I get to see her about once a week so I am happy to have such a wonderful
family. Don't really know what I would do without them. My sister has
alot on her plate with being a stay at home mother and having a new baby.
But she is very strong and doing a great job. My grandmother takes my
mom to her radiation treatments and doctors appointment. Thank God for
good families. I have one of the best. I am so blessed. God is by our
sides, I know and feel it. No matter what happens it happens for a reason.
I now know this even though I don't understand and might not ever understand
it happens. Thanks once again for the support from this website. Everyone
is awesome...
Love you mom....
Marilyn Martinets
D.O.B 8/30/54
Liberty Hill Texas
I am Tammy Freeman my email is
tfreeman002002@yahoo.com
hers is marilynm23@hotmail.com
Feb 8th day before surgery in the hospital with all of us is; My mother [Marilyn], me on the right with short brown hair, my son, sister and her 3 kids
March 12 at DPS with her friends and co-workers,
4 weeks of radiation and temodar
page 2 Bios
bios | treatments | updates | introduction | links
Guestbook
|
Live
Chat Room
|
