high grade glioblastoma multiform

ColdReality
ColdReality Member Posts: 1
edited March 2014 in Brain Cancer #1
My husband and I recently got married april 26, 2003. I'm 24 and he's 27. We just gotten home from a week of camping with our friends (late july of 2003). he noticed his speech got slurred and next thing I know, the MRI tech found a mass and he was in the operating room 3 days later. high grade glioblastom multiform is what the final path reports said; contradictory to the prilim surgeron who thought it was benign. I want to get off of this emotional roller coaster. How can our lives be turned upside down in just a week? Becuase of the confusion in his diagnoisis, we've requested another opinion on his lab test and waiting for the results (in two weeks). Until then, he's healing very well from the surgery. He was talking an hour after surgery and was walking around a day later. The doctor has taken at least 95% of it out. My husband is in good health. we're hoping that this new drug temodar he's going to take will buy us more time for more advance drugs in the near future. I guess at this time, i'm thanking God for each day he gives me to spend with my husband. Preparing for the worst but praying for the best.

its all so hard to cope. we were looking forward to starting a family and looking forward to growing old together. He's so young. he's only real symptom was slurring of speech. then the doctor's noticed his left pupil was dialated. no seizures, not vomiting, neusea, etc. I'm so frustrated.

Comments

  • melissa67
    melissa67 Member Posts: 1
    #2
    I am 36 year old female. Iwas just diagnosed with glioblastoma on Aug 4, had surgery on Aug 10, and now am waitinjg to start radiation and chemo and tremedor. I amextremely afraid of the statistics out there but I intend on kicking this cancers butt. I am looking for positive stories that anyone can share with me
  • elizabeths
    elizabeths Member Posts: 3
    #3
    melissa67 said:

    I am 36 year old female. Iwas just diagnosed with glioblastoma on Aug 4, had surgery on Aug 10, and now am waitinjg to start radiation and chemo and tremedor. I amextremely afraid of the statistics out there but I intend on kicking this cancers butt. I am looking for positive stories that anyone can share with me

    I'm a 37 yo female, who's mom was diagnosed May 16th and is currently in week 4 of a 6 week radiation protocol. If you'd like to talk to her, our email is designlab@earthlink.net
    God bless & remember the words of Winston Churchill...If you're going through hell, keep going.
  • MsDenise
    MsDenise Member Posts: 3
    #4
    melissa67 said:

    I am 36 year old female. Iwas just diagnosed with glioblastoma on Aug 4, had surgery on Aug 10, and now am waitinjg to start radiation and chemo and tremedor. I amextremely afraid of the statistics out there but I intend on kicking this cancers butt. I am looking for positive stories that anyone can share with me

    Hi Melissa, well, I have a positive story for you. My mom was diagnosed with GBM4 almost 5 years ago. She had her first craniotomy on 11/98 followed by 6 weeks of radiation. At that time, her doctor gave her approx. 6-18 months. It seemed her cancer went into some sort of remission. I have to admit, my mom's very ornery but also displayed an extremely positive attitude. In late March 2003, she had her 2nd craniotomy, I brought her back to UCSF for another consultation, the doctor's there suggested putting her on Temodar to slow down the progression of this disease. She had an MRI following two months of chemo, it showed a slight improvement in the cancer site. My mom has been living independently on her own during this entire time and has been doing very well. It's been almost 5 years now but I know that she wouldn't have made it this long if it wasn't for her "I'm perfectly fine", "You've got to have faith", "You've got to believe", I'm going to whip this attitude. She truly is a miracle and I have learned so much about life from her. Best of luck to you, keep fighting, you can be a success story too. Denise
  • Dno_ca
    Dno_ca Member Posts: 3
    #5
    Im a 28 year old man with a 24 year old girlfriend. I was sick tuesday night, had two seizures on wednesday, had a CT scan on thursday, was Dx with oligodendroglioma on thursday, and operated on friday. Talk about life changing quickly. You and my gf are angels to stay by oursides at times like this. There was a time when I told my gf that maybe we should not stay together bc my future is so uncertain but like you, she wouldnt have any of it. Just wanted to say thanks for all of us out there who appreciate what you do for us more than we could ever say. On a positive note, I feel that we should all make cancer better our lives. Appreciate the time we do spend together. Dont let the small stuff work us up more than it needs to. Be strong and have fun when you can. Accept that this is a horrible thing that no one should have to go through and it is ok to feel bad sometimes. There are many therapies out there, you just have to keep fighting. It is a hard battle but it can be won!
  • fcheshir
    fcheshir Member Posts: 4
    #6
    Dno_ca said:

    Im a 28 year old man with a 24 year old girlfriend. I was sick tuesday night, had two seizures on wednesday, had a CT scan on thursday, was Dx with oligodendroglioma on thursday, and operated on friday. Talk about life changing quickly. You and my gf are angels to stay by oursides at times like this. There was a time when I told my gf that maybe we should not stay together bc my future is so uncertain but like you, she wouldnt have any of it. Just wanted to say thanks for all of us out there who appreciate what you do for us more than we could ever say. On a positive note, I feel that we should all make cancer better our lives. Appreciate the time we do spend together. Dont let the small stuff work us up more than it needs to. Be strong and have fun when you can. Accept that this is a horrible thing that no one should have to go through and it is ok to feel bad sometimes. There are many therapies out there, you just have to keep fighting. It is a hard battle but it can be won!

    My mother (54 years old) also diagonsed with glioblastoma. From what I have seen there is not much hope... BUT some people have survived this and why not her... anyway. I have been doing a ton of research already her tumor was just removed last thursday.. Oct. 2, 2003 I have found a website that "claims" to have found some sort of a drug or something that caused the overall body voltage to drop 20% and that cancer cells can not live when the bodies electical current drops this low. IE. Kills all of the cancer cells. Here is the site. Please let me know if anyone has heard of this and if so how effective. http://www.holisticcancersolutions.com/braintumorsarticle.htm

    You can email me direct at fcheshir@yahoo.com.

    Thank you!

    Fred
  • TAremote
    TAremote Member Posts: 56 Member
    #7
    Good Afternoon Melissa. I'm a 53 yr old male, and was diagnosed in July with a grade 4 glioblastoma miltiform. They operated on me Aug 21st, and removed 80 % of the tumor. My tumor is located on the occipital lobe (Vision). I have already completed both my radiation and chemo. At this time we are waiting to wave another MRI to see where we stand with this thing. And yes, it can be a very emotional time, not only for those with the tumor, but even more so for our families and friends. We were also very shocked to find that I had a tumor, and my wife and I both sat in the car and cried. When I first became aware of this, I was unable to handle what I was being told. It was only after a couple of weeks did I realize that I could not handle the burden. I finally gave the burden to GOD, and told him that I would stay here and take care of my family. So far, that deal is working FINE. We all have to remember, for everything there is a purpose, and I can tell you that my purpose is to tell people about God, and what he has done for me. Not many people get the chance I get. Time to turn my life around, and to help others. I'm looking at the journey and not my destination. I need the support of my family, but I will not put the burden of them helping me on their shoulders. My wife tells me all the time, that she is suppose to take care of me, but it seems that I'm taking care of her... O told her , the time will come when I will depend on her, and don't worry about who cares for who. The improtant part is that we are there for each other....
    Ok, enough blabbing from me.. Take this thing one day at a time, and be close to each other. Things in the past that seemed important probably don't seem that important anymore. Refocus on the important things. each other, family, friends, and most importantly, your faith and beleif in GOD...
    I will be here if you or your husband want to talk..
    Thanks and God Bless
    Tom

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