Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

On 5/9/2009 just le wrote:

Hi!

I's been a year and a half since my surgery and diagnosis, and this is the first time I have been able to contact a support site. My latest MRI shows no new signs of cancer and the only thing left from the initial cancer is radiation scarring. My surgeon also has a patient who is seven years out. Congratulations on your longevity. I intend to be part of this survivors club for a long time. We need T-Shirts!

On 12/23/2002 Karen C. wrote:

I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you

On 5/9/2009 just le wrote:

Hello, In October 2007, I has a tumor the size of a baseball removed that was apparently encapsulated. I had chemo wafers placed in my head, with the resulting scar taking 62 staples to close. Three days after surgery, I was squeezing too hard for the nurses when they tested me, sending the neurology people to get harder questions to test my mental capacity, and frustrating the physical therapist because I id the grapevine step with a traditional bounce. While waiting a week for the pathology report after surgery, my daughter and I had been hoping for a primary cancer. Something metasticizing throughout me sounded much scarier than 'the devil you know', glioblastoma. Thirty-four radiation treatments later, My hair was gone but my spirits were high. Chemotherapy with temodar followed and continues, but I am teaching full time even on chemo days. According to statistics and the median for this disease, I should have cashed out in January of 2009. But I am still here, teaching statistics, being living proof of those data points called outliers. I am all convinced that beating this thing is all about attitude, the support system around you, and having a great team of doctors fighting with you. My surgeon tells me that he has a patient who is seven years out pas surgery with tis cancer. Someone has to beat this thing. I plan to be in that club!

On 12/23/2002 Karen C. wrote:

I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you

Diagnosed in june 2007. Going strong today, feel great, dealing with late stage after effects of treatments

On 7/10/2008 stacyloveslester wrote:

dear judy, you are so right there are many stage 4 gbm survivors, i myself am one of them.i was diagnosed in 2001, 8 years im still cancer free.this disease is enough to scare anyone, but it has been beaten. prayer is what what got me through,because without i would have given up,but every a little glimmer of hope would feel my heart, and give me the strength to go on. my prescious husband was also a very big motivator,along with m7y 2 children.never give up,its not in our hands. stay in faith.god bless you all.    stacy survivor

Stacy,

I live in Arizona and come from a family that has (unfortunately) a significant cancer history.  My Father, Grandfather and several Uncles have all passed away as a result of cancer.

 I am working on a project which I believe could be helpful and offer some “hope” to people who are diagnosed with Stage 4 cancer or whom have been told by their healthcare practitioner(s) that they are terminal. I heard the “terminal” words myself, in 1996, when my Father’s Doctor told me first, that he “looked at my Fathers situation as terminal”……… sobering words to say the least.

 I wondered if I could talk to you, sometime during the next two or three weeks, to discuss my idea with you.   

I look forward to hearing from you.  Thank you.   Office – 480-477-6300     Cell 480-242-8090

Sincerely,  Rick

My sister was diagnosed in February of 2002 with a GBM the size of a small orange.   She had a craniotomy to remove 95-97% of the tumor.  The rest was passing through the brain stem and could not be removed surgically.  She then had 30 Radiation treatments and started chemotherapy with Temodar.  She took the temodar for 3.5 years.  They told her to stop so she would not build an immunity. 

 Just last week, she returned to the hospital because she was having symptoms again and the MRI showed the tumor was back.  This time much smaller than the last but laying on the ventrical.  The tumor was removed as much as possible and then they used the GLIADEL wafers ( the chemo wafers) on what could not be removed.  She is checking out of the hospital tomorrow.  They will be doing radiation treatment again and she still needs to talk to the oncologist about the chemo treatment they will be starting and I hope it is the Temodar again.  She would take Zofran for the nausea before she took the temodar and she had no nausea.

I want to tell everyone that my sister is so far a 7+ years survivor. She has a full life. She drives (prior to this last hospital visit,but I think she will get there again), laughs, sings, hikes, etc.  She was able to raise her kids that were 12, 14 and 17 when first diagnosed.  She even works part time when the availability is there for her (she is with a temp agency for dental assistants.) 

Things you need to do if you are diagnosed with this are:

Get a second opinion when you don't like the prognosis or diagnosis.  My sister was told back in 2002 that she would have 9 months to live.  She went to Cedars Sinai in LA and they said they could do better than that.

PRAY- Whether you believe in a higher power or not, I believe prayer is a big answer to survival.  My sister has a large group of people praying for her continually and I believe studies have been done to say some sort of meditation and prayer have helped people's health.

Be positive.  Don't give up.  You can be scared, that's natural, but don't let the fear take over.  There are plenty of support groups out there and you should get in one as soon as you can. 

Blessings to all of you and your families.

On 2/15/2009 lowens wrote:

It is such an inspiration to hear your story.  My family has been through so much in the past few months. My dad is self employeed so no insurance, and in the last of October my mom started having chest pains. Well on November 4th my mom was scheduled for open heart surgery. They had her prepped and ready to go and my dad leaned over her to tell her everything would be ok and had a stroke right there, so needless to say they had to reschedule my moms surgery.  We finally got to go home with dad after the stroke, but something was not right.  He was having seizures 10-15 times a day.  All the seizure medication they had prescribed for him he was allergic to.  So in and out of emergency rooms for bad allergic reactions, we finally found valproic acid, which is bad on the liver, but controlled the seizures.  So with dad doing pretty good we had to schedule moms open heart surgery.  The day of moms surgery dad had over thirty seizures but we made it through.  Instead of dad being able to take care of mom she had to take care of him.  As mom got better it seemed dad got worse.  They had put him on Plavix for a blood clot that was found on the left side of the brain.  Immediately the seizures stopped completely, but very dizzy kinda out of it and alot of stomach pain.  The next day he was passing blood so another trip to the ER.  The Plavix had caused a GI bleed so he came off the Plavix for a while to get his stomach better.  About two weeks later went back on Plavix again, but this time he just started doing crazy things like asking for a glass of tea and then trying to pour it in a water bottle spilling it everywhere.  The dizziness was back so back to the ER.  They air lifted him to another hospital because of blood on his brain. The Plavix almost killed him but i am so grateful because we would have never found out what was really going on.  So we are off to a hospital an hour away from home thinking they we're going to do emergency surgery as soon as he came in.  That  was not the case.  After doing MRIs and CT scans they found a mass.  So four days of scans and two doctors trying to figure out what this was, they finally called in the family and told us there was a tumor on his brain and the doctors said it was HUGE about the size of a grapefruit, we have to do surgery but we have to wait on the Plavix to get out of his system.  So four days later brain surgery, which is insane you never imagine things like this.  The surgery went good they got as much of the tumor as they could without paralyzing his left side.  Now we just pray that the results come back benign, but it will be about 4 days.  So 4 days later dad is doing great he is alert and knows everything, but has alot of fluid all over his body, still in icu still has not had food, but he is in good spirits.  The doctors call us back in to tell us its malignant and he has been diagnosed with stage 4 glioblastoma this was 2/3/09. Its so hard to keep your spirit through this, and its hard to look at him and see his pain.  He is 57 years old, has 3 grandkids, the youngest is 2.  I want my daughter, the one that is 2, to remember her pawpaw.  We are going to beat this.  We go back wednesday to get his staples out and start chemo and radiation.  I have tried to do research on this cancer but i have a hard time the prognosis at every webpage is like 14 months and thats not what a want to hear.  It is so inspiring to hear 10 years, God please let my dad get that.  The situation with no insurance seems to make everything worse.  My parents went from living a good life to not knowing if they could pay there power bill or water bill.  Like i said i am not very knowledgable about all this but if there is anything anyone knows of to help take care of hospital bills please let me know, and if there is anything anyone could give me wisdom about please let me know.  Thanks again for your story we will keep your family in our prayers and please keep our family in your prayers.  This has took a toll on everyone and our health my brother and i are both now on blood pressure and anxiety meds.  I am 26 years old too young for health problems and too young to lose my dad.  I know God is the only one to help us through and if we put it all in His hands He will take care and provide for our family.  Please keep me updated i like to hear good news it gives all of us hope.  Thank you so much.

My husband is a 3 year surviior of GBM 4.  Also inoperable.  He was first treated with radiation and temador.   No reaccurence for 14 months.  Then new leasions off the main tumor showed up.  3 of them, he the went back on temador and had Gamma Knife radiation at he University of Md.  This is pin point accuracy radiation, direct to the the tumors.  He is on 3 seizure meds.  Everytime he has a seizure it takes a few weeks for him to bounce back.  The do take alot out of him and make him weak. 

We pray every day and we give the glory to God for him being here this long.  They said he only had 6 months to 1 year.  They really don't know do they. The hope I can offer is give it to God.  Take one day litterally at a time.  Praise him and thank him for your love one still being with you.  There are alot of scarey things with this disease.  But ask for strength and when you think you can't go on as a care giver.  Take a deep breath dig deep down and ask God for his guidance.

Prayfully one day no one else will have to go through this .