24 y.o. looking for help (GBM)

katie0713
katie0713 Member Posts: 9
edited March 2014 in Brain Cancer #1
I am 24 years old and recently diagnosed with glioblastoma mulitform grade IV. I am currently on Temodar and doing radiation. I would love to talk with anyone in a similar situation

Comments

  • Bigkidtoys
    Bigkidtoys Member Posts: 1
    #2
    Hello Katie... My sister 47 has GBM4. Was diagonsed last May... She was misdiagnosed with a benine mengeioma. The first meeting at the Mayo was very sobering... The Dr. told my sis that she "better get her affairs in order." She actually had 2 surgeries to remove 2 tumors. The Dr. gave her appx 6mo to 2 years to live, this was much better than the what the Dr. gave after the 1st operation.. that was 3 months. She joined a trial for a new chemo treatment after under going a "traditional" radiation treatment. SHe lost most of her hair. She was put into a clinical trial, at first worked... then failed in December with additional tumor growth. Mayo switched to a more traditional chemo treatment, it failed as well, with an addition of 2 more tumor growths... She is now on temodar... the last 3 MRI's showed no additional growth (thank God). She has lost most of her eyesite and sleeps alot. She had a picture perfect life until this all came down. Goal setting and a postive attitude has kept her going to this day... I've read tons of GMB reports and they all seem to think there is a cure on the horizon... I wish the horizon would arrive tomarrow for both you and my sister.

    If you hear of any new treatment methods or find that your temodar treatment seems to be working please let me know. Thanks Scott
    FYI the MAYO is pretty good... wonderful surgeon!

    An odd twist in all this is her son, 16 got a full ride scholarship to Johns Hopkins University... studying neuro surgery.
  • katie0713
    katie0713 Member Posts: 9
    #3
    Bigkidtoys said:

    Hello Katie... My sister 47 has GBM4. Was diagonsed last May... She was misdiagnosed with a benine mengeioma. The first meeting at the Mayo was very sobering... The Dr. told my sis that she "better get her affairs in order." She actually had 2 surgeries to remove 2 tumors. The Dr. gave her appx 6mo to 2 years to live, this was much better than the what the Dr. gave after the 1st operation.. that was 3 months. She joined a trial for a new chemo treatment after under going a "traditional" radiation treatment. SHe lost most of her hair. She was put into a clinical trial, at first worked... then failed in December with additional tumor growth. Mayo switched to a more traditional chemo treatment, it failed as well, with an addition of 2 more tumor growths... She is now on temodar... the last 3 MRI's showed no additional growth (thank God). She has lost most of her eyesite and sleeps alot. She had a picture perfect life until this all came down. Goal setting and a postive attitude has kept her going to this day... I've read tons of GMB reports and they all seem to think there is a cure on the horizon... I wish the horizon would arrive tomarrow for both you and my sister.

    If you hear of any new treatment methods or find that your temodar treatment seems to be working please let me know. Thanks Scott
    FYI the MAYO is pretty good... wonderful surgeon!

    An odd twist in all this is her son, 16 got a full ride scholarship to Johns Hopkins University... studying neuro surgery.

    Thanks Scott! My first diagnosis was anaplastic oligodendroglioma and then Mayo said it was GBM. It is interesting about your nephew. Hopefully he will find the answers for us! Good luck to you and your family.
    Katie
  • JenMcD
    JenMcD Member Posts: 1
    #4
    katie0713 said:

    Thanks Scott! My first diagnosis was anaplastic oligodendroglioma and then Mayo said it was GBM. It is interesting about your nephew. Hopefully he will find the answers for us! Good luck to you and your family.
    Katie

    Hi! I am 29 y.o. and recently diagnosed with a GBM and I am also on Temodar and completed radiation about 3 months ago. Today is actually 6 months to the day that I had my surgery. I also have a 8 month old. Apparently, the headaches that you normally get when you are pregnant weren't pregnancy headaches but the tumor showing it's ugly face. My son, Jack, was 8 weeks old when I had surgery. My fight is for him and his smiling face. I hope you are feeling as well as you can. BE STRONG!! We can do it!!!
  • TAremote
    TAremote Member Posts: 56 Member
    #5
    Katie, I have a stage 4 GBM, diagnosed last July 2003. Had a resection in Aug, went through 6 wks of radiation, and at the same time had temadar. Since then my last two MRI's Jan and Feb, have shown no new growth of the tumor. I continue to take temadar (400 mg) 5 days on and 23 days off. No side effects to mention from the chemo. they removed 80% of the tumor during the operation, and my tumor is located on the occipitial lobe (vision). I have lost some of my eye sight, short term memory, and cognitive thinking has been a problem. But that is due to the operation and the tumor. I know this can be a very hard time in your life. But you must stay positive, and dont swell on what the Dr's have told you about any kind of prognoses. They told me I had 4 months without reatment to 11 months with treatment. Well, I'm still here, and don't plan on leaving anytime soon. You didn't say in your post if you have had a resection or not, or where your tumor is located.
    Staying positive is a major part of our job in getting well. Don't focus on the destination, but on the journey. Look at every day as a stepping stone to over coming this cancer. And who you can help by what you've been through.
    Stay Strong and Stand Tall
    God Bless
    Tom
  • Poggy
    Poggy Member Posts: 1
    #6
    Hi my name is Kaydee. My husband Ron was diagnosed in 2000 with GBM. He passed away in 2002. I needed answers! No one told me anything about the survivors rates and such. I was desperate for answers. Where to go. Etc. I would be glad to answer any questions you have. There are no books that tell much about brain cancer. We went all over the state of california looking for help. He lived longer than they said he would. We tired serveral things. I also know of two people who made it past 5 years who are still here. If I can help email me. I am 60 years old and know how scared you much be. Kaydee
  • jabojones
    jabojones Member Posts: 4
    #7
    Hey I am 28 and was recently diagnosed with a GBM, also on Temodar and radiation.
  • TAremote
    TAremote Member Posts: 56 Member
    #8
    Katie, how are you doing on the Rads and Temadar? I had an easy time duing that treatment phase. The Rads did cause a little tenderness to the scalp, and I have not had any problems with the Temadar...

    Tom
  • saladdays
    saladdays Member Posts: 1
    #9
    Poggy said:

    Hi my name is Kaydee. My husband Ron was diagnosed in 2000 with GBM. He passed away in 2002. I needed answers! No one told me anything about the survivors rates and such. I was desperate for answers. Where to go. Etc. I would be glad to answer any questions you have. There are no books that tell much about brain cancer. We went all over the state of california looking for help. He lived longer than they said he would. We tired serveral things. I also know of two people who made it past 5 years who are still here. If I can help email me. I am 60 years old and know how scared you much be. Kaydee

    My father has GBM IV. He was diagnosed in Januaury and told he had a month. It's now been almost 3. In the second month we tried radiation but it didn't work. He went through three sessions and then slept for 2 days straight. He then opted to stop treatment.
    You must understand my father's condition us fairly rare...atleast to my family and I. Because of the location of the tumors he cannot speak, eat, walk, or do any other small or gross motor functions. He is restricted to his hospital bed and barely stays awake. My question is life expectancy. How much longer will he have to endure his situation? If you have any info or know where I should look..please don't hesitate.
  • katie0713
    katie0713 Member Posts: 9
    #10
    TAremote said:

    Katie, how are you doing on the Rads and Temadar? I had an easy time duing that treatment phase. The Rads did cause a little tenderness to the scalp, and I have not had any problems with the Temadar...

    Tom

    I am ok. Starting my 4th week of Temodar and radiation. I am a little tired, but still up to my daily routine. Thanks for asking!
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #11
    Hi Katie...

    I can't know that if what you have is the same of which my mother had, (stage IV Lung with Brain Matatasees being 9 leisons on her brain) however I want you to know that me being 30 and u of 24 have faith that you will prevale.) Unfortunately, my mother did not make it, we lost her last June that being myself, 2 siblings with spouses, and 2 new nephews. I'm confident that you will be around to see your grandkids :) I would luv to talk at any given time. I myself am trying to prepare myself for good therapy :). Best of "Continued" luck and wishes to you and your family.

    Sincerley,
    Tiffany
  • joc
    joc Member Posts: 3
    #12
    I am assuming Temodar is chemo. Is it toxic? non-toxic? Any info you can supply would be great.
  • katie0713
    katie0713 Member Posts: 9
    #13
    AuthorUnknown said:

    Hi Katie...

    I can't know that if what you have is the same of which my mother had, (stage IV Lung with Brain Matatasees being 9 leisons on her brain) however I want you to know that me being 30 and u of 24 have faith that you will prevale.) Unfortunately, my mother did not make it, we lost her last June that being myself, 2 siblings with spouses, and 2 new nephews. I'm confident that you will be around to see your grandkids :) I would luv to talk at any given time. I myself am trying to prepare myself for good therapy :). Best of "Continued" luck and wishes to you and your family.

    Sincerley,
    Tiffany

    Please don't share stories of loss to someone who is fighting cancer. It is not uplifting.
  • HopeOne
    HopeOne Member Posts: 9
    #14
    TAremote said:

    Katie, I have a stage 4 GBM, diagnosed last July 2003. Had a resection in Aug, went through 6 wks of radiation, and at the same time had temadar. Since then my last two MRI's Jan and Feb, have shown no new growth of the tumor. I continue to take temadar (400 mg) 5 days on and 23 days off. No side effects to mention from the chemo. they removed 80% of the tumor during the operation, and my tumor is located on the occipitial lobe (vision). I have lost some of my eye sight, short term memory, and cognitive thinking has been a problem. But that is due to the operation and the tumor. I know this can be a very hard time in your life. But you must stay positive, and dont swell on what the Dr's have told you about any kind of prognoses. They told me I had 4 months without reatment to 11 months with treatment. Well, I'm still here, and don't plan on leaving anytime soon. You didn't say in your post if you have had a resection or not, or where your tumor is located.
    Staying positive is a major part of our job in getting well. Don't focus on the destination, but on the journey. Look at every day as a stepping stone to over coming this cancer. And who you can help by what you've been through.
    Stay Strong and Stand Tall
    God Bless
    Tom

    You are truly a person of courage and have a great attitude. I am out on the discussion page because I have a sister in law with the illness and am looking for information and success stories of individuals beating this illness back for long periods of time
  • snoble
    snoble Member Posts: 2
    #15
    katie0713 said:

    Please don't share stories of loss to someone who is fighting cancer. It is not uplifting.

    Hi Katie. I'm a 23-yr old female diagnosed over one year ago with a mixed oligo-astrocytoma grade II/IV. Or at least that's the dx I'm going with these days - I've gotten three different ones. I did radiation for six weeks last year, now I'm getting ready to do my 11th round of Temodar. It's going ok, I find the worst side effects of it to be complete lack of appetite and just getting really tired. If you ever want to talk further, let me know, it sounds like our situations have quite a few similarities. Also, I've been lucky to meet several brain tumor survivors - an 8 yr, 15 yr, and 20 yr-survivor. Thinking of them is always inspiring for me.
  • RamonaF
    RamonaF Member Posts: 3
    #16
    Poggy said:

    Hi my name is Kaydee. My husband Ron was diagnosed in 2000 with GBM. He passed away in 2002. I needed answers! No one told me anything about the survivors rates and such. I was desperate for answers. Where to go. Etc. I would be glad to answer any questions you have. There are no books that tell much about brain cancer. We went all over the state of california looking for help. He lived longer than they said he would. We tired serveral things. I also know of two people who made it past 5 years who are still here. If I can help email me. I am 60 years old and know how scared you much be. Kaydee

    Hi Kaydee, I am looking for any and all answers to brain cancer. Full Diagnosis will be tomorrow at 11 am. I believe in God's will for my life, and those of my family, but I feel I am still useful to him on this earth... Thank you, Ramona

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