Brain Tumor

betty2
betty2 Member Posts: 91
edited March 2014 in Brain Cancer #1
Come on, I need some help with these types of brain tumors, that my son has. Lymphoma and glioblastoma,
betty2
«1

Comments

  • mkjackson
    mkjackson Member Posts: 8
    #2
    Betty2: I have been diagosed with Glio-Astrocytoma and I'm 49.5 yrs old. What can I help you with? There is so much technical info availible - have you tried the abta.org? Very Good starting place. come back soon. Mary
  • jrmccrory
    jrmccrory Member Posts: 2
    #3
    Betty, my name is J. McCrory, I have worked with a neuro-oncologist who specializes in brain tumor patients. what information are you looking for? If you are looking for information, I can get you to the website of the Huntsman Cancer Inst. here in Salt Lake City, Utah or Memorial Sloan-Kettering Cancer Center, New York City. Tell what you would like. J McCrory
  • betty2
    betty2 Member Posts: 91
    #4
    jrmccrory said:

    Betty, my name is J. McCrory, I have worked with a neuro-oncologist who specializes in brain tumor patients. what information are you looking for? If you are looking for information, I can get you to the website of the Huntsman Cancer Inst. here in Salt Lake City, Utah or Memorial Sloan-Kettering Cancer Center, New York City. Tell what you would like. J McCrory

    Thanks , I need all the help I can get, The Dr. just told us yesterday that based on his experience Gary Our son has from 4 to 6 weeks. He has glioblastoma and its very large (golf ball sizes and sorta fans out)its in between the two lobes. I saw it yesterday and I don't know how he is walking around, much less making sense most of the time. I don't know if I have time to sit down and research but when this is all over I certainly will.
    Thanks so much ,Send me the web sights My e mail address is jodnns@aol.com
  • Shellyleigh
    Shellyleigh Member Posts: 3
    #5
    Hey, my name is Raechelle And i just recovered from 2 brain tunors. And i just want to tell you to have faith and hope and believe that he will be ok.
  • betty2
    betty2 Member Posts: 91
    #6
    Shellyleigh said:

    Hey, my name is Raechelle And i just recovered from 2 brain tunors. And i just want to tell you to have faith and hope and believe that he will be ok.

    Thanks Shellyleigh, I'm trying to have hope but the Dr.s don't give us any at all they say he has 4 to 6 weeks with their experience that they have with glioblastoma. Hes doing fairly well right now but we notice little things everyday thats a little different mind wise. The tumor is very inoperable, its inbetween the 2 lobes and down deep in the brain.
    So we are just trying to enjoy him as much as we can everyday.
    Thanks,
    betty2
  • Frankielc
    Frankielc Member Posts: 1
    #7
    betty2 said:

    Thanks Shellyleigh, I'm trying to have hope but the Dr.s don't give us any at all they say he has 4 to 6 weeks with their experience that they have with glioblastoma. Hes doing fairly well right now but we notice little things everyday thats a little different mind wise. The tumor is very inoperable, its inbetween the 2 lobes and down deep in the brain.
    So we are just trying to enjoy him as much as we can everyday.
    Thanks,
    betty2

    Hi, my name is Ryan. I was wondering if the Dr. has suggested any treatment? I am a survivor of a astrocytoma which was on my optic nerve and two gioblastomas within my brain. I under went radiation for all of the above. I was 12 when I had the astrocytoma. I am now on a protocal from Duke, in which I am under going raditation and using Temador. I am also scheduled for a Gammaknife treatment. On the side I am trying a Nutritional diet with a number of supplements. I believe that all are working together and I am getting better. If I can help at all just e-mail me. The best thing that I have noticed is the positive attitude.
  • betty2
    betty2 Member Posts: 91
    #8
    Frankielc said:

    Hi, my name is Ryan. I was wondering if the Dr. has suggested any treatment? I am a survivor of a astrocytoma which was on my optic nerve and two gioblastomas within my brain. I under went radiation for all of the above. I was 12 when I had the astrocytoma. I am now on a protocal from Duke, in which I am under going raditation and using Temador. I am also scheduled for a Gammaknife treatment. On the side I am trying a Nutritional diet with a number of supplements. I believe that all are working together and I am getting better. If I can help at all just e-mail me. The best thing that I have noticed is the positive attitude.

    Hi Ryan, thanks for your message, no they didn't exactally sugest any treatment but he is having radiation, The radiologist is his good friend, and he has told him and us tht he is not sure if anything will happen with using radiation but he has scheduled 6 weeks and then a couple of weeks after that he is to have chemo which is something new that you just take every 6 weeks. Its a pill. Where his tumor is is the bad thing. Its in between the lobes and very deep,The surgeon said that he wouldn't try to remove it as its spread out in some places and he would probably tear up more than he can fix. They gave him 3 to 6 weeks. I saw the ct scan and I can't believe how large it is I don't know how hes walking around much less making sense most of the time. He is on huge doses of steriods which is keeping him comfortable now for the most part. We talked to the Dr. about Duke University but he didn't think it would make any difference as Garys tumor is just to big and in a very difficult place with too many little places showing up arounnd the big tumor.
    I do thank you though for answering my message.
    Betty Jones jodnns@aol.com
  • ETurek
    ETurek Member Posts: 1
    #9
    i am a 10 year suvivor of gleoblastoma
  • betty2
    betty2 Member Posts: 91
    #10
    ETurek said:

    i am a 10 year suvivor of gleoblastoma

    Congratulations, where was you tumor located? I'm so glad to hear of a surviver, as they don't give us any hope, where our sons is located and as big as it is. They won't operate because is has so many feelers and The surgeon was afraid he would mess up to much of his brain. I am a two
    time lung cancer surviver but I guess this Glioblastoma is not inherited from what they say.
    we have lots of cancer on my side of the family, but no brain cancer. They have given him due to their passed experience with this kind of cancer 3 to 6 weeeks. Of course no one knows that.
    Thanks for your post and I will be looking forward to hearing from you again.
    betty Jones jodnns@aol.com
  • Amanda_Powell
    Amanda_Powell Member Posts: 1
    #11
    betty2 said:

    Congratulations, where was you tumor located? I'm so glad to hear of a surviver, as they don't give us any hope, where our sons is located and as big as it is. They won't operate because is has so many feelers and The surgeon was afraid he would mess up to much of his brain. I am a two
    time lung cancer surviver but I guess this Glioblastoma is not inherited from what they say.
    we have lots of cancer on my side of the family, but no brain cancer. They have given him due to their passed experience with this kind of cancer 3 to 6 weeeks. Of course no one knows that.
    Thanks for your post and I will be looking forward to hearing from you again.
    betty Jones jodnns@aol.com

    Hello Betty,
    My aunt actually HAD brain cancer. She had 21 tumors spread across her brain. She is being treated at the Cancer Treatment of America in Tulsa. Before she left for Tulsa, the doctors told her to make a Will if she didnt already have one. She had radiation twice a day for three weeks. The brain cancer is gone. We found out about two weeks ago. It was a miracle. Do not always believe what the doctors say. My aunt is taking chemotherapy now to get rid of lung and spinal cancer. Please do not give up hope!
  • mbrine
    mbrine Member Posts: 2
    #12
    betty2 said:

    Hi Ryan, thanks for your message, no they didn't exactally sugest any treatment but he is having radiation, The radiologist is his good friend, and he has told him and us tht he is not sure if anything will happen with using radiation but he has scheduled 6 weeks and then a couple of weeks after that he is to have chemo which is something new that you just take every 6 weeks. Its a pill. Where his tumor is is the bad thing. Its in between the lobes and very deep,The surgeon said that he wouldn't try to remove it as its spread out in some places and he would probably tear up more than he can fix. They gave him 3 to 6 weeks. I saw the ct scan and I can't believe how large it is I don't know how hes walking around much less making sense most of the time. He is on huge doses of steriods which is keeping him comfortable now for the most part. We talked to the Dr. about Duke University but he didn't think it would make any difference as Garys tumor is just to big and in a very difficult place with too many little places showing up arounnd the big tumor.
    I do thank you though for answering my message.
    Betty Jones jodnns@aol.com

    My wife has glioblastoma, has undergone surgery, radiation&chemo. Doctors are now proposing another round of temodar without much guarantee of success. We are trying to look into alternative treatments such as squalamine or one of the trials if she can get strong enough.
  • betty2
    betty2 Member Posts: 91
    #13
    Amanda_Powell said:

    Hello Betty,
    My aunt actually HAD brain cancer. She had 21 tumors spread across her brain. She is being treated at the Cancer Treatment of America in Tulsa. Before she left for Tulsa, the doctors told her to make a Will if she didnt already have one. She had radiation twice a day for three weeks. The brain cancer is gone. We found out about two weeks ago. It was a miracle. Do not always believe what the doctors say. My aunt is taking chemotherapy now to get rid of lung and spinal cancer. Please do not give up hope!

    Thanks for your post, and not to worry, I will never give up hope.We have so many people all over the world praying for him, that some where along the way something good will come of this. I strongly believe in prayer, I'm proof that it works, as you read I have survived lung cancer 2 times, different kinds too. I pray that your Aunt continues to improve and gets rid of that nasty cancer.
    Thanks for your post and please say a little prayer for our son Gary.
    Betty
  • lfrey911
    lfrey911 Member Posts: 6
    #14
    Hello Betty, My name is Larry and was diagnost with an astrocitoma and glioblastoma in 1991. I has surgery and radiation treament. At the time it was also the size of a golf ball. In June of 2001 it re-occurred and I had surgery again and then it re-occurred in Oct of 2002 so a third surgery was done. I am in recovery now (lost my job because of it) but my faith and support of my family is keeping me alive, as well as the wonderful physicians at Wake Forest Baptist Hospital. All I can say is to never give up hope. the Lord will bless you.
  • betty2
    betty2 Member Posts: 91
    #15
    lfrey911 said:

    Hello Betty, My name is Larry and was diagnost with an astrocitoma and glioblastoma in 1991. I has surgery and radiation treament. At the time it was also the size of a golf ball. In June of 2001 it re-occurred and I had surgery again and then it re-occurred in Oct of 2002 so a third surgery was done. I am in recovery now (lost my job because of it) but my faith and support of my family is keeping me alive, as well as the wonderful physicians at Wake Forest Baptist Hospital. All I can say is to never give up hope. the Lord will bless you.

    Hi Larry, You can believe, I will never give up, but what We need is a miracle, His was too large and too entangled in other parts of his brain to do surgery on. Just keep us in your prayers and I will say a prayer for you too.
    Betty
  • mom27liveson
    mom27liveson Member Posts: 5
    #16
    betty2 said:

    Thanks Shellyleigh, I'm trying to have hope but the Dr.s don't give us any at all they say he has 4 to 6 weeks with their experience that they have with glioblastoma. Hes doing fairly well right now but we notice little things everyday thats a little different mind wise. The tumor is very inoperable, its inbetween the 2 lobes and down deep in the brain.
    So we are just trying to enjoy him as much as we can everyday.
    Thanks,
    betty2

    Hey Betty. My name is Jennifer and I have been diagnosed and treated for Anaplastic Astrocytoma(brain tumor). I was 23 when it was found and it was the size of a baseball. I received chemo, 2 different types of radiation, and resection surgery where they placed chemotherapy wafers at the tumor site. I am doing so much better and the docs expect me to have a great recovery. I'm 27.5 years old now. I live close to Nashville, Tennessee, and value my docs very much. My oncologist is with Tennessee Oncology. You can access their website at: www.tennesseeoncology.com
  • BERTHET
    BERTHET Member Posts: 1
    #17
    betty2 said:

    Thanks , I need all the help I can get, The Dr. just told us yesterday that based on his experience Gary Our son has from 4 to 6 weeks. He has glioblastoma and its very large (golf ball sizes and sorta fans out)its in between the two lobes. I saw it yesterday and I don't know how he is walking around, much less making sense most of the time. I don't know if I have time to sit down and research but when this is all over I certainly will.
    Thanks so much ,Send me the web sights My e mail address is jodnns@aol.com

    BETTY,IAM 37YR OLD FATHER OF THREE CHILDREN.I DISCOVERED I HAD GLIOBLASTOMA DEC 10TH 2002.THE TUMOR WAS REMOVED FROM THE RIGHT PARENTAL AREA OF MY BRAIN ON DEC.14,2002.I COMPLETED SEVEN WEEKS OF RADIATION MARCH 17,2003.I RECENTLY HAD AN MRI ON APRIL 10 2003.THERE IS NO SIGN OF CANCER AT THIS TIME....PSALMS 118:17 I SHALL NOT DIE BUT LIVE AND DECLAIRE THE WORKS OF THE LORD!! I PRAY FOR EVERYONE TOUCHED BY THIS DREADFUL ILLNESS.LOVE ALEX EMAIL...BERTHET3@AOL.COM
  • Loriserao
    Loriserao Member Posts: 1
    #18
    Amanda_Powell said:

    Hello Betty,
    My aunt actually HAD brain cancer. She had 21 tumors spread across her brain. She is being treated at the Cancer Treatment of America in Tulsa. Before she left for Tulsa, the doctors told her to make a Will if she didnt already have one. She had radiation twice a day for three weeks. The brain cancer is gone. We found out about two weeks ago. It was a miracle. Do not always believe what the doctors say. My aunt is taking chemotherapy now to get rid of lung and spinal cancer. Please do not give up hope!

    Hi Amanda. I contacted the CTA about programs for brain cancer. They said they did not have any. Do you know who I might contact in Tulsa?
    Thanks - Very anxious!
  • lbarduren
    lbarduren Member Posts: 1
    #19
    jrmccrory said:

    Betty, my name is J. McCrory, I have worked with a neuro-oncologist who specializes in brain tumor patients. what information are you looking for? If you are looking for information, I can get you to the website of the Huntsman Cancer Inst. here in Salt Lake City, Utah or Memorial Sloan-Kettering Cancer Center, New York City. Tell what you would like. J McCrory

    i need information about macroadnoma pitutary tumors
  • smellen
    smellen Member Posts: 2
    #20
    mom27liveson said:

    Hey Betty. My name is Jennifer and I have been diagnosed and treated for Anaplastic Astrocytoma(brain tumor). I was 23 when it was found and it was the size of a baseball. I received chemo, 2 different types of radiation, and resection surgery where they placed chemotherapy wafers at the tumor site. I am doing so much better and the docs expect me to have a great recovery. I'm 27.5 years old now. I live close to Nashville, Tennessee, and value my docs very much. My oncologist is with Tennessee Oncology. You can access their website at: www.tennesseeoncology.com

    Hello. My name is Ellen and my brother was just diagnosed with anaplastic astrocytoma III and I am just now starting to learn about this terrible disease. He is only 35 and has 4 small children. I am right now in complete denial and in constant search of survival stories to keep me afloat. Anyone who has anything hopeful to say please email me...
  • bolliel
    bolliel Member Posts: 1
    #21
    smellen said:

    Hello. My name is Ellen and my brother was just diagnosed with anaplastic astrocytoma III and I am just now starting to learn about this terrible disease. He is only 35 and has 4 small children. I am right now in complete denial and in constant search of survival stories to keep me afloat. Anyone who has anything hopeful to say please email me...

    Ellen, www.virtualtrials.com is a very useful site. It has survivor stories, noteworthy treatments, a mailing list to subscribe to, really a lot to help you understand anaplastic astrocytoma. A first start for cancer patients, cut out the sugar!! Sugar feeds a tumor. My brother underwent an awake craniotomy for his tumor, is now undergoing radiation and temodar (chemo) and is really doing excellent (working every day).

    Good luck. You are welcome to e-mail me: bolliel@hotmail.com (below is my brother's info)

    Linda, sister of Edwin (28 years old)
    diagnosed with GBM, second opinion: Anaplastic Astrocytoma
    Stereotactic Biopsy March 7
    Awake Craniotomy April 17; all visible tumor removed
    Started Radiation (36 x 1.8 Gy, totals 6480 rads) concurrent with Temodar (150 mg daily) May 20

    Medications: 4 mg Dexamethason daily
    25 mg melatonin daily
    Taking various supplements

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