Hi all! New to the site - glioblastoma

JeanCTY
JeanCTY Member Posts: 6
edited March 2014 in Brain Cancer #1
Hi all, I'm a 37 yr. old female who was diagnosed with a Glio in February. Due to the location, it was inoperable, but I did the Temodar (did it make anyone else throw up as violently as I did?) along with the radiation (my hair fell out in a nifty "Mohawk" pattern), and overall I was very scared but optimistic that this thing CAN be overcome.

Radiation was over in April, and at the end of May I had an MRI. The docs all said it was "good news" that the tumor shrunk considerably and that there was "no new growth" anywhere else. They can't tell if the tumor is just dead-tumor scarring or not, but it's significantly smaller than the baseball size it was.

My question to you guys is: Is that common after treatment? To have a good MRI? I've heard so many horror stories about the Glio, and so I was surprised that the Docs were't telling me how short my lifespan was sure to be anymore. They told me that as long as my MRIs are good, they won't worry too much about me. I go for my next MRI in August.

If any of you have any info that might prove helpful to me, etc., I would really appreciate it.

Be strong, everyone...

Jean
«1

Comments

  • hrtbroken
    hrtbroken Member Posts: 8
    #2
    Hi Jean, Welcome! I too am fairly new hear myself (couple months).

    I don't know how much help I can be. I'm neither a survivor nor a caregiver. But I'm the sister of a fighter. I can only speak from MY experience. But sometimes listening to other people's experiences, one can learn lots. Just please remember, EVERYONE is different! : )

    Long story short (and I'd be more than happy to share it with you someday if you're interested) my brother (who lives in FL...I live in MA)had many good Mri's since he's been diagnosed with Glioblastoma back in March '03. Back when he was diagnosed, doc's said anywhere from 2 - 10 yrs. (but that all depended on how his body accepted treatment and nothing else went wrong..etc. etc.)

    16 months later, he's now stage 4 and was recently (a week ago) given a 4-6 month span. Lots has happened in-between....

    Not sure if I've helped much. I hope so. If there is anything else I can help you with, please don't hesitate to ask... I check in often.

    My best wishes to you!

    Hrtbroken
    (a.k.a. sharon)

    "LIVE well LAUGH often LOVE much!"
  • TAremote
    TAremote Member Posts: 56 Member
    #3
    Good Morning Jean.
    I'm 53 yrs old and was diagnosed July 2003 with a stage 4 Glio Blastoma Multiform. I had a resection. glio wafers, then 6 wks of radiation along with chemo (temadar). After radiation, you are looking for shrinkage of the tumor. I hav enot been sick due to the Temadar. Only some indigestion, which sometimes was pretty intense. I might suggest, that if you haven't had a second opinion, go get one NOW. When I hear that a tumor is inoperable, my first though is (Second Opinion). Don't focus on the time they tell you that is left. Those are only numbers, averages. I wa told 4 to 11 months back last July. Well, I'm still here. Focus on the journey, and not the destination. I have MRI's every 6 weeks, this is due to the rate of growth this tumor can have.
    I hope this has helped you in someway...

    Stay Strong and Stand Tall
    God Bless
    Tom
  • wrightmsw
    wrightmsw Member Posts: 6
    #4
    hi, my husband has glioblatoma multiforme and when he was on temodar he threw up very violently. One night it was for 4 straight hours and nothing stopped it. That was when he stoped taking it. Then he had a recurrence removed with a x-knife procedure and was put on BCNU, which did not cross the blood brain barrier. Then in May of this year he had his second craineomy to remove another tumor from the original cite and they inplanted gliodel chemo wafers. He is curently on cpt-11 once a week chemo drip for 4 weeks. He has done 3 weeks fo far with one more to go on this cycle. He has a MRI on this Monday and we are hoping for a good one this time. hope you continue to do well. Will include you in my thoughts and prayers come into the chat room and visit melinda a.k.a wrightmsw
  • JeanCTY
    JeanCTY Member Posts: 6
    #5
    TAremote said:

    Good Morning Jean.
    I'm 53 yrs old and was diagnosed July 2003 with a stage 4 Glio Blastoma Multiform. I had a resection. glio wafers, then 6 wks of radiation along with chemo (temadar). After radiation, you are looking for shrinkage of the tumor. I hav enot been sick due to the Temadar. Only some indigestion, which sometimes was pretty intense. I might suggest, that if you haven't had a second opinion, go get one NOW. When I hear that a tumor is inoperable, my first though is (Second Opinion). Don't focus on the time they tell you that is left. Those are only numbers, averages. I wa told 4 to 11 months back last July. Well, I'm still here. Focus on the journey, and not the destination. I have MRI's every 6 weeks, this is due to the rate of growth this tumor can have.
    I hope this has helped you in someway...

    Stay Strong and Stand Tall
    God Bless
    Tom

    Tom,

    I had a second opinion done through Sloane Kettering in NYC, they agreed with the docs out here in Colorado. My tumor was right up against the corpus collosum (sp) in the midst of my language center, and one wrong move during surgery would have rendere me unable to speak or relearn language. No one recommende surgery at all, and when I saw the location of the tumor, I agree with them. Oh yeah, when the first doc told me to "get my affairs in order" I was really offended and I remember thinking that he had no idea who he was talking to...that I was a fighter by nature and he was mistaken with how well I could do in beating this thing. So far, so good here, and I remain optimistic. I'm glad you're doing well and I hope you continue to be well :)

    Jean
  • JeanCTY
    JeanCTY Member Posts: 6
    #6
    hrtbroken said:

    Hi Jean, Welcome! I too am fairly new hear myself (couple months).

    I don't know how much help I can be. I'm neither a survivor nor a caregiver. But I'm the sister of a fighter. I can only speak from MY experience. But sometimes listening to other people's experiences, one can learn lots. Just please remember, EVERYONE is different! : )

    Long story short (and I'd be more than happy to share it with you someday if you're interested) my brother (who lives in FL...I live in MA)had many good Mri's since he's been diagnosed with Glioblastoma back in March '03. Back when he was diagnosed, doc's said anywhere from 2 - 10 yrs. (but that all depended on how his body accepted treatment and nothing else went wrong..etc. etc.)

    16 months later, he's now stage 4 and was recently (a week ago) given a 4-6 month span. Lots has happened in-between....

    Not sure if I've helped much. I hope so. If there is anything else I can help you with, please don't hesitate to ask... I check in often.

    My best wishes to you!

    Hrtbroken
    (a.k.a. sharon)

    "LIVE well LAUGH often LOVE much!"

    Hi Sharon,

    Thanks for the reply, and I'm sorry your brother was given a poor prognosis. How old is he, if I may ask. I'm glad he's a fighter because you really have to be to deal with this disease. I'd never spent a day in the hospital in my life, so this has been a real eye opener for someone who has never been sick with anything more than the flu!

    I'll keep your brother and your family in my thoughts,

    Jean
  • JeanCTY
    JeanCTY Member Posts: 6
    #7
    wrightmsw said:

    hi, my husband has glioblatoma multiforme and when he was on temodar he threw up very violently. One night it was for 4 straight hours and nothing stopped it. That was when he stoped taking it. Then he had a recurrence removed with a x-knife procedure and was put on BCNU, which did not cross the blood brain barrier. Then in May of this year he had his second craineomy to remove another tumor from the original cite and they inplanted gliodel chemo wafers. He is curently on cpt-11 once a week chemo drip for 4 weeks. He has done 3 weeks fo far with one more to go on this cycle. He has a MRI on this Monday and we are hoping for a good one this time. hope you continue to do well. Will include you in my thoughts and prayers come into the chat room and visit melinda a.k.a wrightmsw

    Hi Melinda,

    Thanks for the reply! Yeah, I can relate to your husband's reaction to the Temodar, I had many 4-hour vomiting sessions and now I have to take 3 different anti-nausea meds during my monthly Temodar sessions. I don't like to take meds, but it's better than being sick all night! I guess your husband is lucky that his tumor is able to be reached through surgery...mine is (was) right in the part of my brain that controls language and learning ability and I was told that I'd run the risk of losing my ability to speak if I had surgery and that as long as I do well, they won't suggest surgery. So far, so good. I've heard great things about the gliadel wafers, sounds like your husband's doctors are on the right track.

    You know, I've tried to get into the chat room and my Java program seems to be malfunctioning because I can't get in. I'll get ther eone of these days after I solve my computer woes :)

    Take care, and I'll keep your husband in my thoughts as well,

    Jean
  • myall
    myall Member Posts: 3
    #8
    Hi everyone, I'm a 27 year old female who was diagnoosed with an Anaplastic Astrocytoma last May, not quite as aggressive as a Glio. Actually the pathologist graded it between a grade III and IV. My doctor made the final call so we treated it as aggressively as a Glio. I too was told my tumor was inoperable but after seeking a second opinion had the tumor removed. I followed up with 6 weeks of radiation and chemo (Temodar) at the same time. The Temodar only made me slightly sick. I was able to control it with the nasaua medicine. I'm sorry it made you so sick. On Sept. 3, after 4 weeks of rest I had my first MRI and it looked good. I then continued on Chemo till June of this year with periodic MRI's which have all looked good. I know my diagnosis is not the same as yours but apparently we are making strides in beating this. I hope you take Tom's advice and get a second opinion about the surgery. Keep up the faith.
  • hrtbroken
    hrtbroken Member Posts: 8
    #9
    JeanCTY said:

    Hi Sharon,

    Thanks for the reply, and I'm sorry your brother was given a poor prognosis. How old is he, if I may ask. I'm glad he's a fighter because you really have to be to deal with this disease. I'd never spent a day in the hospital in my life, so this has been a real eye opener for someone who has never been sick with anything more than the flu!

    I'll keep your brother and your family in my thoughts,

    Jean

    Thank you Jean,

    My thoughts and well wishes are with you and yours as well.

    To answer your question....my brother is only 42.

    Sharon
    (hrtbroken)
    "LIVE well LAUGH often LOVE much"
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #10
    am a 44yr working on my 2rd tumer. had the 1st tumer removed but it is a agresave 6 month later it came back, this is after 37 radiation session at the Leo Jections in greenvile. had a couple of MRI but had to wait fot the rads to clear out. this last time i got the glialer wafers put in. the neurinon say they there would be no opetation, sits to close to the brain area for speak and such. will try temader again and go from then... let me know of yo went to talk, i check my maik 1-2 days. also the best so far for BT is braintumor.org go the the site and chech the meshage bound.
  • StNick
    StNick Member Posts: 1
    #11
    Hi, I am new to this site so am learning how to use it. Encouraging to know that your GBM shrank with Radiation and Temodar. My sis-in-law, who is 36 was just diagnosed this month with a grade 4. She has already had a partial resection. I was wondering if anyone out there has had success with stem cell protocol. We are simply interested in knowing what complementary treatments exist besides the radiation/chemo. (am I even posting this in the right place?)
    thanks
  • whrsthecure
    whrsthecure Member Posts: 1
    #12
    Hi...So glad to find this site. Your stories are a true comfort. My husband, 26 yrs. old, was diagnosed in Jan. 04 with anaplastic astrocytoma. He was doing great with 6 cycles of Temodar, until last week's MRI showed significant growth. Almost half the size of first tumor. Flew down to MD Anderson for 2nd opinion. Their pathologist is calling it a grade 4-glioblastoma. I've read alot on these, that news was devastating. We fly back down Wed. to have 2nd surgery. That will confirm diagnosis. Will prob start radiation 2 weeks after surgery. The dr. said the tumor is behaving well considering it's been 7 mos. since surgery if it is a glio. Cleveland Clinic did the first resection/craniotomy. They wanted to do 2nd surgery with gliadel wafers, but MD Anderson said the wafers may close other doors down the road if other treatment is needed.

    Has anyone done treatment at the Burzynski Clinic in Texas?? I've heard several success stories. Please let me know...Thanks so much for your own stories, it helps me more than you'll ever know. My heart has been torn apart since all of this has happened. We want kids so badly and are afraid this will prevent that from happening. I will pray for all of you and hope you'll do the same for my husband, Todd. Thank you again!!

    Sherry
  • lovemyfather
    lovemyfather Member Posts: 8
    #13
    TAremote said:

    Good Morning Jean.
    I'm 53 yrs old and was diagnosed July 2003 with a stage 4 Glio Blastoma Multiform. I had a resection. glio wafers, then 6 wks of radiation along with chemo (temadar). After radiation, you are looking for shrinkage of the tumor. I hav enot been sick due to the Temadar. Only some indigestion, which sometimes was pretty intense. I might suggest, that if you haven't had a second opinion, go get one NOW. When I hear that a tumor is inoperable, my first though is (Second Opinion). Don't focus on the time they tell you that is left. Those are only numbers, averages. I wa told 4 to 11 months back last July. Well, I'm still here. Focus on the journey, and not the destination. I have MRI's every 6 weeks, this is due to the rate of growth this tumor can have.
    I hope this has helped you in someway...

    Stay Strong and Stand Tall
    God Bless
    Tom

    Hello my father was diagnosed with GBM 4 today. He had a biopsy on tuesday that was quite successful in removing much of this evil tumor. The tumor is located in the back right side of his brain directly after the cranium which allowed for a smooth surgery. His left peripheral vision is lost. He is 66 years old and quite A fighter.
    Ladies and gentlemen I am a young man who is ready to put up the fight of my life for my father. How highly would you all recommend treatment with Themador? What other options are there? ANy names of top notch doctors in this field you know of? I live next to UCLA medical center in Westwood and a nice lady from the Brain Tumor Society told me a doctor is one of the best.
    I pray for as many responses (be they good or bad) that you may have to help me. I am so profoundly proud that there exists sites like these with people as strong as all of you that help one another.
    I think in some ways its tougher on the family then on the patient, but we are all in it together!
  • mah29
    mah29 Member Posts: 1
    #14
    lovemyfather said:

    Hello my father was diagnosed with GBM 4 today. He had a biopsy on tuesday that was quite successful in removing much of this evil tumor. The tumor is located in the back right side of his brain directly after the cranium which allowed for a smooth surgery. His left peripheral vision is lost. He is 66 years old and quite A fighter.
    Ladies and gentlemen I am a young man who is ready to put up the fight of my life for my father. How highly would you all recommend treatment with Themador? What other options are there? ANy names of top notch doctors in this field you know of? I live next to UCLA medical center in Westwood and a nice lady from the Brain Tumor Society told me a doctor is one of the best.
    I pray for as many responses (be they good or bad) that you may have to help me. I am so profoundly proud that there exists sites like these with people as strong as all of you that help one another.
    I think in some ways its tougher on the family then on the patient, but we are all in it together!

    Hello, I hope I am doing this correctly. Anyhow, I can sympathize with you and what you and your family are going through right now. In January, my father, who is 54, was diagnosed with a GBM. It was devestating to our whole family. One day, life was normal, then the next it wasn't. He had a seizure, which put him into the emergency room. There, they did a CAT scan and found something on the brain; however, he spent many days in the hospital because they did'nt think it was a tumor. Finally a biopsy was done and confirmed that it was a tumor-a GBM stage 4. We took Daddy to a hospital out of our home town for the surgery. He had 90% removed. He then started the Temodor and radiation; however, it caused him to go into kidney failure. Of course this is our story in a nutshell. At this point, treatment has been stopped in order to give him quality of life. He had another MRI done yesterday, and it still showed no new abnormalities. He has been off of all treatments for five months. I know this is so hard, and I am willing to help anyone, including you, through this. Likewise, this would also help me. I too love my father very much. He still has so much life left to live, so many more things to experience. Best of luck to you and your Daddy!
  • vgarrett
    vgarrett Member Posts: 2
    #15
    myall said:

    Hi everyone, I'm a 27 year old female who was diagnoosed with an Anaplastic Astrocytoma last May, not quite as aggressive as a Glio. Actually the pathologist graded it between a grade III and IV. My doctor made the final call so we treated it as aggressively as a Glio. I too was told my tumor was inoperable but after seeking a second opinion had the tumor removed. I followed up with 6 weeks of radiation and chemo (Temodar) at the same time. The Temodar only made me slightly sick. I was able to control it with the nasaua medicine. I'm sorry it made you so sick. On Sept. 3, after 4 weeks of rest I had my first MRI and it looked good. I then continued on Chemo till June of this year with periodic MRI's which have all looked good. I know my diagnosis is not the same as yours but apparently we are making strides in beating this. I hope you take Tom's advice and get a second opinion about the surgery. Keep up the faith.

    may i ask where yours was located?

    thanks
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #16
    vgarrett said:

    may i ask where yours was located?

    thanks

    Hello,

    Due to how long ago the posting was that you are responding to, you may want to contact this person through the internal CSN email system regarding your question. You can do this by clicking on the envelope icon next to their question. Alternatively, you can click on the Help link on the left hand side of the page to learn more about the CSN internal email system.

    I hope this information has been helpful.

    Take care and be well,

    Dana
    CSN Dana
  • eventually
    eventually Member Posts: 1
    #17
    whrsthecure said:

    Hi...So glad to find this site. Your stories are a true comfort. My husband, 26 yrs. old, was diagnosed in Jan. 04 with anaplastic astrocytoma. He was doing great with 6 cycles of Temodar, until last week's MRI showed significant growth. Almost half the size of first tumor. Flew down to MD Anderson for 2nd opinion. Their pathologist is calling it a grade 4-glioblastoma. I've read alot on these, that news was devastating. We fly back down Wed. to have 2nd surgery. That will confirm diagnosis. Will prob start radiation 2 weeks after surgery. The dr. said the tumor is behaving well considering it's been 7 mos. since surgery if it is a glio. Cleveland Clinic did the first resection/craniotomy. They wanted to do 2nd surgery with gliadel wafers, but MD Anderson said the wafers may close other doors down the road if other treatment is needed.

    Has anyone done treatment at the Burzynski Clinic in Texas?? I've heard several success stories. Please let me know...Thanks so much for your own stories, it helps me more than you'll ever know. My heart has been torn apart since all of this has happened. We want kids so badly and are afraid this will prevent that from happening. I will pray for all of you and hope you'll do the same for my husband, Todd. Thank you again!!

    Sherry

    Dear Sherry:

    Bets of luck to you and your husband. My son who is 18 was diagnosed with an astro.anaplastic in Jan. 2005 he has had radiation and chemo and is now being followed by Dr henry Friedman at Duke University. As far as the Dr B from texas..I checked with a number of specialists and they directed me to quackwatch.com..you can read about him there.

    blessings...annie
  • Jake.Alive
    Jake.Alive Member Posts: 4
    #18
    eventually said:

    Dear Sherry:

    Bets of luck to you and your husband. My son who is 18 was diagnosed with an astro.anaplastic in Jan. 2005 he has had radiation and chemo and is now being followed by Dr henry Friedman at Duke University. As far as the Dr B from texas..I checked with a number of specialists and they directed me to quackwatch.com..you can read about him there.

    blessings...annie

    Quackwatch
    Is it possible that Quackwatch is itself written by 'Quacks' with vest interests elsewhere ?? Me thinks so.
  • BabsOregon
    BabsOregon Member Posts: 30
    #19
    Happy to hear your story!
    My 46 year old husband was diagnosed with an inoperable GBM on May 31st. The tumor is in his motor strip. We had a second opinion from UCSF which confirmed that the tumor was inoperable. He has had some interruptions to his radiation and chemo (temodar and Avastin)because his biopsy site did not heal properly but he is expected to resume in a week. I have been searching for positive news from a GBM survivor with an inoperable tumor and there haven't been many. I am very glad to hear that you are doing well after the first round of treatment.
    I am sorry that the temodar has been so difficult for you. My husband had no nausea, which we were very happy about. I don't think 4 hour vomiting sessions would add much to the overall picture.
    Take care and please keep posting.
  • Radhika Divecha
    Radhika Divecha Member Posts: 2
    #20
    GBM grade IV
    HI jean,

    Great news and hope your MRI scans stay clean forever! My 10 year old daughter has GBM too and is in the second stage of her treatment. Her tumor was non operable and she underwent radiation and chemo and still is on a 5 day chemo cycle. Has been so for the last year now. I'm keeping my fingers crossed the devil has gone away for ever and blessed her with a new life.
    Regards
    Radhika
  • P53 Ram
    P53 Ram Member Posts: 1
    #21
    Hey Jean,

    Hey Jean,

    I can relate very well. GBM is scary as hell and Tamador is not exactly a walk in the park. I was told that I have 6 months after diagnosis 14 years ago :). Following surgery and radiation at Henry Ford Hospital in Detroit, I took Tamador for 18 months. As my name suggests, I have P 53 gene mutation and so far survived 5 different cancers. Guess I am stubborn and not that easy. Have hope, trust n yourself and never ever give up. I did and still do one brain MRI every year and current oncologist thinks I can start doing it every alternate year.

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