new brain cancer diag.

fsopeb
fsopeb Member Posts: 1
edited March 2014 in Brain Cancer #1
I was diagnosed on 9/26/02 with brain cancer that metastasized from the lymph nodes 1st radiation consult tomorrow. Has anyone else had this kind of cancer. I think I just need to reasurrance.pretty scared

Comments

  • mdprice
    mdprice Member Posts: 2
    #2
    I don't the same type of cancer as you but do have grade 3 astrocytoma in the parietal lobe of my brain. I have had brain cancer for 5 years and went through 6weeks of radiation, numerous chemo trials and 2 surgeries, the latest one on 3-15-02. It all happens so fast, it feels as though you are being swept away. It's O.K. to be scared though, that part is normal. What helped me the most was keeping a positive attitude thoughout my journey and knowing that my family and friends were there for me to lean on when things get tough. There are some great doctors, nurses and technicians out there, you just have to believe in them and their ability to heal.
  • eneldo
    eneldo Member Posts: 5
    #3
    mdprice said:

    I don't the same type of cancer as you but do have grade 3 astrocytoma in the parietal lobe of my brain. I have had brain cancer for 5 years and went through 6weeks of radiation, numerous chemo trials and 2 surgeries, the latest one on 3-15-02. It all happens so fast, it feels as though you are being swept away. It's O.K. to be scared though, that part is normal. What helped me the most was keeping a positive attitude thoughout my journey and knowing that my family and friends were there for me to lean on when things get tough. There are some great doctors, nurses and technicians out there, you just have to believe in them and their ability to heal.

    My 16yr old daughter has Grade 4 Glioblastoma Multiforme which 96% was removed on Sept 16, 02, and just started Temodol (a chimo test drug). Did you look at alternative treatments, please email me at eneldo@galleria.ca. Thank-you.
  • lisa777
    lisa777 Member Posts: 13
    #4
    Hey fsopeb, My name is Lisa777 I can understand your fear.
    I am here to reasure you If I can do it, you can do it.
    Six years ago I was diagnosed with 4th stage inoperable
    B cell lymphoma originating in my brain stem and
    metastasized down my spine, 3tumors, contained in my CNS.
    I also suffered severe brain trauma, because tumor blocked my
    spinal fluid from going into my spine. My brain began to swell cuasing
    pressure cuasing all kind of disturbing symptoms. I actually fell into a
    coma the night I went in the emergency room. Doctors said I would have
    died if I was not there not there that night. I would have went to sleep and
    never woken up. I was in a coma for a couple of weeks. A few hours after I
    went in they did an emergency surgery. That is when they realized it was
    completely inoperable. The only alternative was to drain the fluid out of my brain,
    with 4 subsequent brain surgeries. One a week, until I got to the point they felt
    it was safe to treat the cancer. By that time I had developed three more tumors on
    my spinal cord. Becuase lymphoma only originates in the brain stem 2% of the time,
    it being in the 4th stage, and I had already suffered damage from the pressure. They
    had no protocol on how to treat me. Doctors from 7 major brain research hospitals in U.S.
    conferenced and gave up with what they felt was the best treatment. They told me they
    had to treat the cancer as aggresively has it was attacking, to have any chance of killing it.
    My chemo consisted of 8 different medicines, and took 4 days to go through my body.
    wanted to do 6 rounds rounds, but I fell into a coma after the 4th round. Then my entire brain
    and spine were radiated for 3 months. Before they started treatment doctors told us
    that they had no idea how this treatment would effect me. Could not tell us possible side effects
    they simple didn't know. If I survived the treatment I would have a chance. I had a five percent
    survival rate, and that was being generous, becuase they simply didn't know. So be reasurred
    You are loved and I am sending you healing light and will be praying for you. Please email if you
    need anything or just want to talk to someone that has been through it. Love and light Lisa777
  • morrxs
    morrxs Member Posts: 6
    #5
    I do not have your type of brain cancer. I was diagnoised with Grade 4 Glioblastoma Multiforme on 10/07/2002. Even so, I have a web site (http://206.50.22.26/testweb/morris) that you may find helpful. It tells my story so far. Just know you are not alone.
  • Shellyleigh
    Shellyleigh Member Posts: 3
    #6
    Subject: Re: No Subject
    Message: hello my name is Raechelle. I was diagnosed with an astrocytoma on sept.17 of 01. I had 2 brian tumors. I have had 4 surgeries. I had my first one on 9/19/01. right after that i started to hemmoraged and they had to go back in on the 20th. They found another one on 2/5/02. So they watched it and i thought it would be best that they took it out. So on 8/6/02 i had my second tumor removed. the surgeries went great. Then i was setting around one day and my incesion started to bleed and pus started to come out i called my doctor and they said that they would have to go in and do something. They thought that one of my titanium screws was infected. They went in and it was somthing totaly different. my fatty tissue was infected bacteria got in there and started to tear away my fatty tissue. It was right over my bone flap. they said if they didn't get it out sooner they they would have to put a metal plat in there because the bacteria would have ate my bone flap. I have been throught a lot. But i got throught it. It really opened my eyes to new things. I had alot of people who loved me and they where always by my side. I also had my faith and i new that everything would be ok. I would be glad to talk to you. My screen name is Shellyleigh00421@aol.com. I would be happy to talk to you. I would like ot talk to you. no one want to talk to me because they get scared. so please e-mail me and talk to me. Thank you.

    ~~Raechelle~~
  • mbrine
    mbrine Member Posts: 2
    #7
    morrxs said:

    I do not have your type of brain cancer. I was diagnoised with Grade 4 Glioblastoma Multiforme on 10/07/2002. Even so, I have a web site (http://206.50.22.26/testweb/morris) that you may find helpful. It tells my story so far. Just know you are not alone.

    Morris
    My wife was diagnosed with glioblastoma multiforme stage 4 about 1 week later on oct 18. She has been thru surgery, radiation and chemo. Doctors are now proposing another round of temodar with small chance of success. We are trying to look at alternative treatments, but haven't found anything concrete. I will check your website to see how you are doing, hope it is good. cfbpep@msn.com
  • betty2
    betty2 Member Posts: 91
    #8
    mbrine said:

    Morris
    My wife was diagnosed with glioblastoma multiforme stage 4 about 1 week later on oct 18. She has been thru surgery, radiation and chemo. Doctors are now proposing another round of temodar with small chance of success. We are trying to look at alternative treatments, but haven't found anything concrete. I will check your website to see how you are doing, hope it is good. cfbpep@msn.com

    Hi Morris, My name is Betty and My son Gary was diagonosed with Glioblastoma I don't know what stage but His Dr.s have given him 3 to 6 weeks to live. He is doing radiation and will start chemo on the 24th of March, the chemo as I understand it is going to be 2 pills and then in 3 weeks he will have an I.V. He has survived so far a month tomorrow. He has lost his short term memory for the most part and does some strange things, for him. His tumor is in between the 2 lobes and is sorta fanned out like a butterfly and real deep.
    Tell me is your wifes anything like this. Looking forward to hearing from you.
    Betty email jodnns@aol.com
  • betty2
    betty2 Member Posts: 91
    #9
    mbrine said:

    Morris
    My wife was diagnosed with glioblastoma multiforme stage 4 about 1 week later on oct 18. She has been thru surgery, radiation and chemo. Doctors are now proposing another round of temodar with small chance of success. We are trying to look at alternative treatments, but haven't found anything concrete. I will check your website to see how you are doing, hope it is good. cfbpep@msn.com

    This is Betty again, I forgot to tell you that my son Gary is 48 yrs old and has a wife and 3 teenagers.
  • perryland
    perryland Member Posts: 2
    #10
    eneldo said:

    My 16yr old daughter has Grade 4 Glioblastoma Multiforme which 96% was removed on Sept 16, 02, and just started Temodol (a chimo test drug). Did you look at alternative treatments, please email me at eneldo@galleria.ca. Thank-you.

    Hello,My husband has the same as your daughter.He is doing radiation&temodar.We just started a week ago.He had maligement cells that came after the tumor was removed.So we are still in shock,I'll be praying for your daughter.I don't believe they offered anything else.
  • HOIBC
    HOIBC Member Posts: 3
    #11
    betty2 said:

    This is Betty again, I forgot to tell you that my son Gary is 48 yrs old and has a wife and 3 teenagers.

    Grade 4 GBM

    Hello. I was told in May 2012 that I have Gr IV GBM after mild symptoms I thought were maybe early signs of a stroke. I've had  surgery 6 weeks of radiation with Temodar and am just about done 6 cycles of Temodar. Last MRI found signs of recurrence where the original 2 inch tumor was in mytemporal/parietal lobes. Plan now is for metronomic Temodar which means daily in a lower dose than I had with the cyclic treatment. I'm hopeful this will help. get it back under control. I was originally told I might have 3 months to live,maybe a year with treatment but not likely. I had no serious deficits before or after surgery. I continue to ride horses and cross country ski. I take meds for very mild seizures (no-one would know I have them if I didn't tell them.)Because of this I'm not allowed to drive which is inconvenient as we live on a ranch in the country. Thanks to a supportive husband and friends I'm living a fairly normal life. I'm 60 and until last May workd almost full ime as a registered nurse at the local hospital. It's been a life-changing experience for all of us. (I also have a daughter 25, who just started college Altough the survival odds fo this disease are awful I plan to fight it as long and hard as I can. There are new drugs and treatments in the works and lots of ongoing research. Never give up hope! People are not statistics

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