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| Stacey McDaniel - Bio |  |
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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. My website is http://www.babiesonline.com/babies/s/sayler I want to offer encouragement to anybody out there that is diagnosed with this dreadful disease. Stacey McDaniel |
my five children, Kelsey, Logan, |
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| Jill McKown - Bio | |
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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
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| Bart Miller - Bio | |
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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 |
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| Hilary Newton - Bio | |
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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. 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.
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| Sandra Pierce - Bio | |
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" MY SISTER'S FIGHT
FOR LIFE" Surgery, 4-5-02 resection of 85% was removed and 10% to 15% had to be left as it involved her left side and resection would have paralized her.. surgery went well and Sandra had minimal weakness with her left arm and les along with some speech impairment, hopeful that rehab would help her.we were now waiting for the path report. we were all very hopefull that the tumor would be benign. two weeks later with a pre-op dx of glioblastoma multiforme it was true stage 4 and fatal..not once did our faith in god nor our familys love and hope leave us. SANDRA'S SYMPTOMS WERE BEGINING TO WORSEN 2 WEEKS AFTER SURGERY AND RADIATION TREATMENTS WERE NOT TO START FOR ONE MORE WEEK. finally radiation TREATMENTS began and on treatment 5 things were not good she became SEVERly NAUSEated, DEHYDRATED AND couldnt keep anything in her stomach. SANDRA WAS TAKEN BACK TO THE UW er dept. via medic transport where DOCTOR'S GAVE US LITTLE to no hope.and possibly 6 WEEKS left with us.faith is very powerful when you believe combined with an unconditional love from family and friends which brings the hope of another chance, a new day,and the will to live, as we told the doctors how wrong they were she confirmed us all and came home two days later.. the tumor had come back bigger than before her surgery
and once again our faith was tested. the plan now was to increase radiation
to max dose decreasing the weeks from 7 weeks 5 days per week to max dose
at 10 visits.she also received her first of 8 chemo treatments. sandra
was released to go home 5-10-02. she is holding on in hopes that her faith
with alternative medicine and her willto live will endure. withour family's
strong faith in god ,the power of prayer,, and the love and forgivness
of our lord and saviour jesus christ, in a world of terrorism, starvation,
& terminal illness, faith hope and love , gods medicine will over
come all.. A special thank you to all who have taken time out of their lives to create the flyers, contact the sponsers, set up a fund account, and cordinate the car wash and benifit run for the love of sandra. to all sponsers and to every heart that has given or contributed,this is one family that will forever be grateful to you all, as our prayers are being answered. our greatest thanks belongs to god who has been there for us completly...........Amen! To our own very special guardian angle who found an alternative medicine which in two days has helped sissy to eat her first meal after not eating for 6 weeks, god blessed us with you uncle stretch, with all our hearts we love you. All our love , |
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| Kathleen Rhodes- Bio | |
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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
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| David Ritter - Bio | |
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January 5, 2003 Statement If you have come to this page, you are due a pat on the back, for it is difficult to read the stories about lives impacted by Glioblastoma Multiforme. I myself have resisted telling my story in this way, and have only recently felt the impulse to do so. Now, though, I may write until I stop. I was diagnosed with GBM4 after a sudden grand mal seizure in February 2002. I was then a healthy 43-year-old with no prior symptoms save for a headache, and a recent mysterious vision anomaly. I am technically too old to be considered a ‘young adult’, but I feel a definite solidarity with the YASG and those that support it Ironically, when I was a healthy 22 year-old, I never thought I’d live to be 44. Now diagnosed as terminal, I intend to live to be 88, at least. Every situation is unique. I have been blessed with incredible support from my wife, friends, family and employer, each of whom have lived up to their stated values in ways unexpectedly beautiful. Since today I retain some of the faculties to contribute what I’ve learned, (if anything), so far, it is in no small part due to their extreme efforts, and I thank them, but can’t thank them enough. My case is one of a cluster of three, in lives that only intersect at a high school in Quincy, Illinois, in the years 1974-1976. A possible fourth case, an astrocytoma 3, intersects one of the GBM4s, just a little later, as a college sweetheart, years before the GBMs surfaced. I survive. If I were an interested researcher, I would have to think that there was a ‘clue’ in all that, somewhere. (No?). There may be more details, lost to me. Among the manifold challenges of the year, maintaining and developing certain character traits has been important to me this past year. One of the less-frequently noted is a sense of humor, perhaps because humor is so subjective. I must say though, that one must maintain a certain dichotomy of thought to reconcile the diagnosis with an intention of survival.(The word itself implies it’s opposite to me, therefore, I often call myself a GBM Liver).[Liver, like the organ]. For me, a lot has come down to the conventional wisdom offered to most healthy young persons. I would add, “Eat some ice cream”, ride the rollercoaster again, pick up an instrument. I certainly couldn’t see the horizon at all, when I was a healthy 22-year old. Now, I can’t get out of bed without almost tripping on the horizon. Heck, I may be 88 already, but I don’t think so. There is now and now. Nothing is definite. Nothing is indefinite. In fact, that may be the bulk of the wisdom ascribed to great age. I’ll let you know. You be there to hear it.
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| Kevin Roberts - Bio | |
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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. |
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| Tom Rolland - Bio | |
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| Hi Here is our story - On February 10th 2002 I brought my husband to the Emergency room with a splitting headache and projectile vomiting. We thought it was a bad migraine but later found out that it was a brain tumor. On February 12th he had surgery and the surgeon told us and the lab work later confirmed that he had a Glioblastoma Multiforme IV. It is the most deadly and fast moving brain tumor you can have. The surgeon removed all of the tumor he could see. The doctor told our family that Tom had about 26 weeks to live if he didn?t take any radiation and if he did take radiation it might give him a year. My husband was 37 years old at the time he was diagnosed. We were not sure what to do so we took the doctor's referral and went to radiation about a week after he got out of the hospital. Tom only took five days of radiation and it made him feel terrible, and sapped all of his energy. We are Christians and knew that we needed to seek the Lord's guidance in this crisis. So we went to our Church and had Tom anointed with oil and hands laid on in prayer by the elders of the Church (James 5:14). After that some friends came forward and told us of some alternative ways people were fighting and winning the battle against cancer. Since the doctors did not hold out any hope we decided to throw our lot in with the holistic treatments and did not take anymore radiation. We started the holistic regimen in March. Tom's three month MRI looked good, his brain was clean and the hole where they removed the tumor was empty except for a tiny line around a portion of the inside of the hole. The doctor said that it could be scar tissue, a benign bit of tumor or a regrowth of the Glioblastoma. At the six month MRI his brain was completely clean. There was no cancer at all. The doctor said that it was a miracle. In 14 years of practice he had not seen anything like it. This is what we did:
For the first three months I also rubbed Frankincense on his head because it is supposed to have anti-tumor properties. I searched on the Internet to see if there were other people having success with the flaxseed oil and cottage cheese. Go to www.beckwithfamily.com for some good testimonies and links. If you go to www.yahoo.com and go to groups there are a couple of groups, FLAXSEEDOIL and FLAXSEEDOIL2, and there is a good exchange of information there. I found other sites like www.curezone.com where people were having success beating their cancer through holistic means. Another good sight is www.shirleys-wellness-cafe.com After doing more research and talking to more people we added some things to our regimen after the first three-month MRI.
He started using an extract of a Brazilian fruit plant called Graviola (5 drops three times a day). We also added the AIM Garden Trio twice a day to build up Tom's health. Our whole family tries to take at least one AIM Garden Trio a day now. Tom did not go vegetarian, but we did cut back on meat and sugar. We follow the biblical eating laws and do not eat any pork or unclean fish. It makes it harder for your body to fight cancer if you put unclean and artificial things into it. We think artificial sweetener caused Tom's cancer. He used to drink at least 2 liters a day of diet soda. Go to www.dorway.com for more info. Please feel free to call Tom or I if you have any questions at all. Tom and Kelly Rolland 985-223-1328 or Email kellyrolland@hotmail.com or Kelly@flaxoflife.com Tcrolland@hotmail.com We just got Tom's 9 month MRI info at the beginning of December 2002. He is all clear no sign of cancer. He is back to work and back to normal. Praise the Lord Jesus! Here is the info if you need to order any of the things that I've mentioned in my note. Swanson Health Products 1-800-437-4148 or go to swansonvitamins.com I order the flaxseed oil, shark cartilage, CoQ10 and Borage Oil from them because they have the best prices I've found. You can find these things at a health food store too. I ordered my Frankincense from Young Living essential oils, they are therapeutic grade oils, not perfume. Call 1-800-371-2928 and use customer #535072 to become a member Aim Products Garden Trio I get my Graviola from M7 or you can do a search for graviola on the Internet and you can buy it in capsule form. Two Good Books: |
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| Liz Scicluna - Bio | |
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Liz Sciclunas life has been great, always healthy, full of adventures, friendships, travels and most importantly a supportive, loving family. She is 29 years old and has a wonderful boyfriend who she has known for almost two years now. She worked at Vonís supermarket as a checker and has made countless friends and appreciates each and every one of them. On February 10, 1999, Liz experienced a seizure and was diagnosed the next day with a brain tumor. Her craniotomy (brain surgery) was done at Downey Community Hospital on February 12 and revealed a Stage IV Glioblastoma Multiforme. Needless to say this has definitely changed her life around 360 degrees. She has received six weeks of radiation at Downey Community Hospital, followed by two weeks of boost radiation at UCLA. Her regular medications were tegretol, decadron, tamoxifen and accutane. She took other medicines for headaches, pain etc., in addition to her multivitamin and mineral therapy. She also has received physical therapy to improve her walking skills at Downey Community Hospital which is closer to her home. She continued her MRI's every six weeks at UCLA. Her surgical lesion did not heal well and on September 13, 1999 she went for a second craniotomy (UCLA) to remove an abscess that had developed. She began physical therapy three times a week and occupational therapy twice a week. Her lesion was still not healing after taking antibiotic therapy and receiving frequent wound care. She then received eighteen hyperbaric treatments which finally healed her lesion. Then on September 23rd MRI she found out the tumor was growing again so she discontinued her tamoxifen and accutane therapy and began a CPT-11 chemotherapy program at UCLA. After the first round of CPT-11 the tumor continued to grow. As a result, she discontinued the CPT-11 and began and oral chemo called Temodar. Her first round of this therapy showed that her tumor had not grown in size! She has just finished her second round of Temodar and feels good on this chemotherapy so far. She continues her regular medications as well but now is on neurontin in addition to tegretol to help prevent seizures. She is on Oxyear for pain and headaches. Liz has always been a very strong, positive person. She feels that this chemotherapy is preventing blood flow to the tumor and it will eventually shrink and kill the tumor. Her numerous family members all over the world, as well as her friends and family here have been very supportive of her and continually keep up their daily prayers for her progress. This is really helping her remain positive and hopeful that things will turn out well for her. composed by Liz's sister Miriam Matulich
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Liz (center) with her neices |
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| Ariane E Scott-Pallend- Bio | |
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| I have been visiting this site without posting for about 6 months now. Now my story is so stale, I will attempt to make it brief. Before I do, I will thank you for giving people this outlet and this hope. My husband and I were in terrible disstress when we recieved my diagnosis almost a year ago.
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| Mark Schackman - Bio | |
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My surgery was February 25/00. The tumor was discovered a couple of months of moving from Las Vegas. I had the new job. I had the new car for my job. During the coarse of operation , my eyes took a hit. I lost my left peripheral vision in both eyes. Driving is difficult. But, Im fighting. Im winning. The chemo nearly left a blank on my MRI Soon I will begin my hobbies. Fishing, motorcycles, big artwork . Im 31 years old so I know I have the power
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| Tim Smith - Bio | |
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My name is Tim Smith you would know me as the tool man! I have been in a fight with my GBM grade 4 since September 10th 2004! When I was diagnosed the tumor was about the size of a golf ball and in a spot that was unremovable! At least this is what my local doctors told me. They even went as far as to say why get it removed it will only buy you a few months at the best. Well after hearing the % of survival I started to do my homework and sent my MRI’s to Duke Hospital where I heard the Michael Jordon of Brain surgery was! Dr. Al Freidman returned my call right away and after my radiation and temador was finished we made an appointment for a resection. On December 29th04 I traveled to Duke and had it done and it was a success. I have been in the care of Duke ever since. After a trail study of chemo a small 5mm spot turned up on a MRI and my chemo was changed right away. Recurring tumors is not uncommon along with your cancer becoming immune to the chemo regimen you might be on. I have faith in both my God and my doctors that I will not become a statistic not a negative one at least. One thing I have noticed there is a community among cancer patients that will help you in anyway you may need. If anyone Needs more info email me at tool1@localnet.com
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| Rich Stiles - Bio | |
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I'm a 39 month Glioblastoma Multiforme survivor, 50 years old now but 47 when the GBM surfaced. Allison and I have three kids ages 15 (high school), 18 (college), 21 (college). I work as a computer programmer for UPS. Here's a brief chronology of my war against brain cancer, with some feelings and thoughts mixed in. October 19, 1999: I felt fine, never had any symptoms. While setting up the sound system in our church in a stressful situation (feedback, that terrible screeching noise), a blood vessel burst in my head. Felt like someone shoved an ice pick up the back of my head. I went home with a headache. The headache got worse, caused convulsive vomiting. This is when I started not saving memories, memories of the next few days are minimal. October 20, 1999: Visited the family doctor who now says I was acting really bizzare, he sent me for a CAT scan, which revealed a brain hemmorhage. Allison took me to the local hospital's emergency room, they sent me by ambulance to University of Maryland General Hospital in Baltimore. October 22, 1999: Dr. Lawrence Chin, Chief of Neuro-Oncology, opened the side of my head and scooped out the blood clot. Dr. Chin reported finding an abnormal growth in my brain. Angiogenisis triggered by the growing tumor had triggered a blood vessel to grow, that blood vessel had burst. At this point, the possibility of brain cancer never entered our heads. A week later, the pathology lab reported GBM. The prognosis was "don't expect to reach the normal lifespan, 72 years". Compared to other prognoses, this one seems positive. This near death experience had a strong spiritual facet. I lay in bed in the dark, and thought "Jesus let the lame man walk, Jesus gave the blind men sight, Jesus brought Lazarus back from death, Jesus offers me eternal spiritual life. I have no excuse for fear." Sometimes when I'm down I repeat this in my mind. More spritual stuff just after surgery. This thought came to me, I didn't make it up. "The hospital is God's healing hand, the doctors and nurses are his ministers, they are His healing hand." All of the hospital staff treated me with love and thoughtfulness. October 28, 1999: Another brain surgery, this one to remove the tumor. Dr. Chin reported he may have left some tumor in my head, to avoid removing good brain tissue. A doctor, not associated with the hospital, said "Mr Stiles, in my experience this cancer always kills." Allison and I were down for a few days before realizing we should ignore his words. We always have thoughts and words in our heads, I banish the bad words, replacing them with strong words. Here are my favorite words, paraphrasing Winston Churchill - "We will fight cancer. We will fight with surgery, with radiation therapy, and with chemotherapy. We will fight with our family and friends and their endless prayers. We will fight with God's healing power! We will never give up, never surrender, never give in." Who do you suppose is stronger, cancer or the Lord God Almighty, creator of heaven and earth? Late November 1999 to early February 2000: Radiation therapy. I lost 16 pounds, but subsequently gained 35 pounds. Started working again fulltime in February - but with capacity diminished by fatigue and poor memory. Radiation was worse than chemotherapy. Hair on one side of my head is permanently fried off. The skin turned black with a radiation burn. Late February 2000 to September 2000: Chemotherapy by IV. Every six weeks, I stayed in the hospital for four days, with two IVs in my arm for two chemo drugs: BCNU and Topotecan. Some of the room-mates and all the nurses had good attitudes and gave me strength. To quote Don, my first room-mate: "This chemo really works. I had tumors the size of baseballs on my liver, they just disappeared!" September 2000 to September 2001: Temodar chemotherapy, pills taken at home, 5 days in a row, 4 weeks off. I was able to live a normal life through this period. June 2000: Stopped taking Dilantin, an anti-seizure medicine. Had a seizure a month later, woke up in the emergency room, started taking Dilantin again. No seizures since then. January 2003: Brain MRI shows nothing! That is, no change from the last MRI, no tumor growth. Now I believe I'm cured, life has returned to normal. Sometimes we sing my favorite song in church: "I'm trading my sickness, I'm trading my pain, I'm laying them down for the joy in the Lord...". Rich Stiles
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| Jeff Swarlis- Bio | |
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Hello. I am writing
on behalf of my husband Jeff. It was three weeks ago today that he was
diagnosed with a brain tumor. Let me start from the beginning. On New
Year's Eve 2004, Jeff was experiencing numbness in his left leg. He was
also doctoring blurred vision in his left eye. We saw the family doctor
who thought his leg problem was a pinched nerve in his back. He then started
to visit a chiropractor for that. Three weeks ago, he was working at Lowe's
putting doors away when he suddenly felt a hard tapping in his head. He
felt as though he might pass out, so he sat down, called me at home and
then called our family doctor. They suggested that he go to the emergency
room right away. There they did an MRI showing a 4 cm tumor at the top
of his right side of his brain. The doctors and surgeon all felt very
confident that it was not cancer. Well, he had surgery the following Wednesday,
which went very well, but the doctor came to me in the waiting room and
told me that it was in fact cancer. After the tumor was studied we found
out that it was a class 4 GBM. Jeff will be starting treatment within
the next few weeks. He will have radiation treatment 5 days a week for
6 weeks while taking Temozolomide. After this his temozolomide will be
increased and he will take that 5 days out of the month along with receiving
irinotecan by IV twice a month for the next year. We believe strongly
that God will take care of him, but I don't think I've ever been so scared
in my entire life. Jeff has a very positive outlook on this. He's 37 years
old and otherwise very healthy. We have twin daughters Sara and Heather
who will be 6 in May. Your web site has given me so much hope. Thank you
for letting me share our story. |
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| Laura Ullman- Bio | |
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Hi, Last Nov. I awoke with an intense headache. It was relieved with Ibuprofen. That night (actually 4 am the next morning) it was back with a vengence-like someone drilling my head with a drill. More Ibuprofen. After that the headache retreated to a dull throb. I managed it for two weeks before I went to see my internist. I have been a nurse for 23 years and my husband is a physician- we are the BEST at ignoring symptoms, and treating ourselves! Long story short- I had a GBM. It was resected on November 25th. I had an incredible surgeon ( who also is our good friend ), who did a top notch job, removing 100% of the physical tumor. He implanted BCNU chips into the tumor bed, which delivered up to 100 times the chemotherapeutic dose of BCNU that I would have received if I had the chemo delivered IV. After 6 weeks and 6,000 rads of radiation, plus taking Temodar, by mouth, I am doing great. Right now I am just finishing up 4 weeks of no meds then I will start the monthly Temodar protocol. My last MRI was clear and choline levels in the brain, done by spectroscopy, were within normal limits. All of you GBM survivors out there- don't forget to ask for spectroscopy when you have your MRIs done! I am blessed that my tumor was not in a vital area, I have no deficits. I have acupuncture treatments twice a week, do Reiki twice a week and take handfuls of supplements I also visualize a lot! I believe the most powerful weapon I have against this tumor is prayer and faith. I have a website that my husband set up for me. Through it I have literally thousands of people praying for me and my family. The website is caringbridge.org/me/lauraullman My husband, Joe, has posted all of my MRIs on there plus pictures of us. It has been a life saver because Joe frequently updates the news on it, keeping people current of my status.There is a message board there for friends and family to post encouraging messages. It has been a G-dsend. I have read all of your stories and feel so heartened by you all, your gracious courage, your strength and will. Keep up the good work.Feel free to email me.
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| Andy Watson - Bio | |
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My name is Andy Watson. I am 49. I live in Auburn, Maine. Sept. 28, 2005 while at work I suffered a gran mal seizure. I was rushed to the Maine Medical Ctr. in Portland and had a golf size tumor removed from the left side of the brain, 5 hours later, I was in the recovery room. My symptoms were massive headaches and memory loss. Before the seizure I was confused and could not speak in complete sentences. On Oct. 20th I have an appointment to get a mri and then have my neurosurgeon to give me the what the treatment should be. While I am waiting, I am taking the homeopathic approach re: Ruta 6c and Cal Phos 3x. Dr. Prasanta Banerji from India claims he has treated thousands of brain tumors over a 30 year period with about 75% success!! A fellow at my support meeting is having success with it. I was the most anti-homeopathic guy around, but seeing believing and nothing to lose, I am here. Will give progress soon. A report on the herbs by looking up on Google ruta+banerji+pdf. I also expect to get the chemo, radiation and Temodar . So I am the "old" kid on the block. Any helpful hints, good jokes, prayers, questions or plain old chattin...just holla. God Bless you. My email is andywatson88@hotmail.com. Lets beat the beast together! :)
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| Ryan Weidman - Bio | |
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In the summer of 1997, life was good. My wife, Krista, and I both had good paying jobs. We had graduated from the University of Wisconsin, Stevens Point in May of 1995 and were married in September of that year. We were ready to tackle the world and believed everything in our lives was in order. In July, I began to have recurring headaches that didn’t feel like a "normal" headache. Krista insisted that I make a doctor’s appointment. I scheduled an appointment with our family physician. Dr. Almonte scheduled an MRI that revealed a tumor the size of a tangerine within the left temporal lobe of my brain. I was immediately referred to the neurology department of the Marshfield Clinic, about 40 miles from where we live. The following day involved complete physical and mental tests to determine which functions could be affected during the surgery, which was scheduled early the following day. The evening before my surgery, my entire family was present to show their support. On Friday, August 6th, 1997 both Krista’s and my family drove to the Marshfield Hospital where my surgery was scheduled for 8:00 a.m. There was a delay since an emergency patient had to be taken care of first. After the surgery, I was informed the entire tumor could not be removed without causing permanent and extensive damage. While I was in recovery, Dr. Neal, the surgeon met with my family. They were very frightened, but still hoping that it was non-malignant. He told them that a biopsy would be performed on the tumor and that I would need their complete support. On Monday, Dr. Choucair, the neuro-oncologist that tended to me, came into my room and told me that my tumor was diagnosed as glioblastoma multiforme and that I had a 3% chance of living 5 years. I couldn’t stop thinking of how it could be possible for a young, healthy person, like myself, could have such a horrible life-ending experience. My entire family was devastated. Next came standard radiation for six weeks. To me radiation was not all that bad and did no more than make me lose my hair and make me very tired. So a long nap every day helped. At that time I was taking a steroid to decrease inflammation within my brain. This made me gain weight because it caused my body to retain water. At first I was taking 16 pills a day. After a few weeks I was to gradually reducing the amount I was taking. I had no problem reducing the dosage until I went from went from 2 pills to 1 pill a day. I had the worst pain I had ever experienced. My legs throbbed so bad that I wanted to go to the emergency room to stop the pain. My doctor informed me the next day that I should reduce at a slower pace: from 2 pills a day to 1-3/4 pills and so on. That made a difference. After radiation came chemotherapy. My doctor gave me an opportunity to take an experimental drug called DFMO, so my wife and I decided to go with my doctor’s advise and signed into the trial. The drug was added to the chemo plan containing Procarbazine, CCNU and Vinchristine. While taking these drugs my diet was regulated. I wasn’t allowed to eat cheese (tough for a Wisconsinite) and MSG, which seemed to be in everything I wanted to eat. Things were going well, until one night in October, while I was watching TV and my wife was at work, I had my first and only grand mal seizure. When Krista came home, I told her what had happened. The next morning we made a doctor’s appointment. Dr. Chocair prescribed the first of four prescriptions to prevent seizures. The first three drugs caused intolerable reactions, including rashes, itchy eyes and excess saliva. The fourth was more manageable. My body never liked taking these drugs, so it took awhile to find one that my body would accept. Within that time I experienced three or four seizures. These were no more than a loss of speech for about five minutes. I found a prescription and a lower dosage that my body accepted. Since then, nearly five years ago, I haven’t experienced a seizure. A few days after the grand mal seizure, Krista noticed some redness and swelling on my forehead and temple area. We pointed this out at a regular checkup we had scheduled on the following day. Immediately a CAT SCAN was ordered only to find that I had an infection on the exterior of my skull. I was sent to surgery immediately to remove about one-third of the scull on the left side of my head. This made life more difficult in that no more than the skin on my head protected my brain for the next year and a half. I was not able to go back to work because I had to carry an antibiotic IV for eight weeks until the infection was completely healed. When I was able to go back to work, I still had four sessions of chemo to go through. I had to be more careful around home and work and had to wear a hard hat until I had a plate installed in March of 1999 to duplicate the removed skull. I am happy to say that my wife and I were able to have two beautiful children, a daughter now 2-1/2 years and a son one year old. The greatest problems that I live with are damage to my short-term memory, a loss of a quarter of my eyesight, and reduction in my reading ability. As of my last MRI in December 2002, the tumor has not grown since my first operation 5-1/2 years ago. With a positive attitude and the support of my family and friends, I believe I have won!
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| Danny Yorke - Bio | |
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Hello to all My name is Danny Yorke I have a glb brain tumor and would like to talk to other people my age and see how they are going. I am 35 years old and i have had my tumor for nearly 18 months, in that time i have had 3 operations, 2 lots of radiotherapy and are now on my 2nd lot of chemo drugs. my last o.p was on my throught which was extremly rare as glb are not suppose to spread from your brain down only the other way sometimes. So i have a lump and a vean taken out on my left side which leaves me with a big scar and a dent or impression. I still have tumor on my brain as they could not get all of it, i just have to wait to see how quickly it grows. My latest chemo drug is temozolomide which i have just started (4 days) so i dont know how it will go but i live in hope i have heard alot of talk about glevac/ glivac a new drug which is working well on lueciama patients. It was being trialed on brain tumors last time i looked into it but if any one knows something new please forward. Anyway hope to talk to someone soon as us ausies might have some tricks or secrets were hiding. Regards Danny Yorke
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