Glioblastoma grade IV

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Comments

  • summerjones
    summerjones Member Posts: 3
    cjtoth said:

    I Can Relate
    Hi Amy,

    I am in a very similar circumstance as your husband. I was diagnosed with a very large, inoperable oligodendroglioma 8 years ago, at age 44. I was initially placed on corticosteroids (decadron and then prednisone) after my biopsy, gaining over 40 pounds, ballooning from 175 to over 215 pounds. I've lost a lot of the weight and look a lot better since tapering off of the steroids, but it has been very hard to shake some of the excess weight. From what my wife and family tell me, the steroids really did a number on my personality. I'm ashamed to say that I was apparently not a pleasant guy to be around. I can't remember most of the behavior I exhibited and other things they say I did. I thought that I could control myself and there was no way those tiny pills could have such a huge affect on me. I am happy to say that I reverted back to my old self after I slowly tapered off of the medications.

    I was also treated with Temodar. Initially, I was on the same regimen as your husband for 24 months. After an 18 month break, my doctor noticed some new growth, and I did another closely-monitored 12 months. I absolutely hated the stuff, but it was a necessary evil. I am happy to report that my tumor appears to be fairly stable.

    I realize that this has also been hard on my wife and kids (two daughters, currently 17 and 8 years-old.) I try not to complain about the rock in my head, and most days seem fairly normal. It is very frustrating for me however, because I don't think my wife fully understands how the tumor is affecting me. Because there are no outwardly-visible, physical symptoms, I think it's easy to forget I've got this thing. I also suffer from the stupid male-pride thing, not wanting to be a burden on anyone, thinking I can handle this just fine on my own. I keep a lot of my worries and fears from my family. I don't dwell on the fact that I have a brain tumor, but I still have my deeply funky moments - usually at very private times.

    If your husband is anything like me, he's probably incredibly frustrated that he can't be there to provide for his family, in the same way he is accustomed to. I also want to make sure that my family is provide for and taken care of, in case things take a change for the worse.

    Since your kids are in their teens, I can only suggest that you be honest about what is happening to their father. The teen years can be tough on the whole family under the best of circumstances. Unfortunately, they have to face something that most of their peers will never know, and they will be forced to grow-up a little more quickly. When my youngest girl was smaller, I simply told her I had a "brain-owie." Now I can be a little more honest with her. Make sure they understand that this is not his fault, or their fault.

    Your husband probably has a very gentle psyche right now, so don't treat him like a helpless baby. It's important and therapeutic for him to feel like he can still do things and make positive contributions to support the family. I think he also realizes that this is hard on you and the kids, so don't feel like you have to be a martyr. Don't feel like you have to sacrifice everything to take care of him 24/7. He realizes that you need a break every now-and-then, so don't feel guilty that you need to "get away" from time to time. It will probably make him feel better, knowing that you and the kids can feel comfortable relaxing, taking a break every so often.

    I hope all is going well for you and your husband, Amy. Although I have a different tumor than your husband, I think our circumstances are very similar.

    Good thoughts are with you.

    - Charlie

    GBMIV
    Hi Everyone, my wife was diagnosed with a frontal lobe mass in April, after complaining of massive headeaches for a few weeks, confirmed as gbm IV during surgery on May 24th. We were very fortunate to be treated at UCSF in San Francisco and she had a complete and successful surgery which removed about 95 percent of the tumor. She then did six wks of radiation and temodar when the surgery had healed, and is now on her second cycle of temodar 310/5days. Her first cycle was difficult with lots of fatigue during and after the five day cycle. We have changed the anti-nausea meds in hopes of alleviating some of the nausea. Overall, her hair has started to grow back now two months after radiation and all her cognitive and language skills are normal intact. The big game changer hopefully here is a vaccine that was made using a heat shock protein technique using her actual tumor so that she is being given a total of 22 vaccines over the course of a year and a half. Her attitude and approach to live are inspiring and we live in the moment most of the time.
  • 3sweetbabies
    3sweetbabies Member Posts: 1
    It's happening so fast...
    My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

    They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

    We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...
  • Beckymarie
    Beckymarie Member Posts: 357

    It's happening so fast...
    My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

    They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

    We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...

    Coping
    First let me tell you how sorry I am that you are going through this. My husband was diagnosed with a GBMIV and it was very hard on all of us. Have you seen your doctor? I have never been one for medication but have to admit, going on an antidepressant and anti-anxiety meds was extremely helpful. I also started seeing a counselor. She was the one person that I could vent and cry to and not get alot of cliches back. Accept all the help that is offered. A friend setup a website "Lotsa Helping Hands" where you can list things you need help with: meal prep, yard work, babysitting etc. and friends can sign up to take on that task. People want to help. You and your family are in my thoughts.
  • wheezie457
    wheezie457 Member Posts: 1

    It's happening so fast...
    My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

    They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

    We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...

    Coping
    My sister was diagnosed in June and had surgery 5 days after. She has completed 5 weeks of radiation with Temodar and now is on a higher dose of Temodar and is in a clinical trial of Avastin concurrent. I know exactly how you are feeling and I didn't have to also deal with children. I found myself going on line and reading everything I could on Glioblastomas and then I stopped as I was getting depressed. I can see where an anti-depressant might help and definitely talking to a counselor. In the beginning everyone rallies around you but eventually as things are stable, you're on your own. One thing I did do is open a page on caring bridge as I was finding it very difficult to answer all the emails and telephone calls; now I post a message once a week and everyone can go look and check out my sister's progress. It's been a great help. I work in the medical field so have more information at hand than is sometimes wanted; but you need to be an advocate for your husband and make sure he is getting everything he needs and that everyone is communicating with you on the medical side of things. My heart goes out to you and everyone else who is dealing with this dreaded disease. My father died at the age of 55 with the same thing - so it definitely has hereditary traits. My prayers are with you and if I can help in any way - don't hesitate...
  • sfg1017
    sfg1017 Member Posts: 5

    GBMIV
    Hi Everyone, my wife was diagnosed with a frontal lobe mass in April, after complaining of massive headeaches for a few weeks, confirmed as gbm IV during surgery on May 24th. We were very fortunate to be treated at UCSF in San Francisco and she had a complete and successful surgery which removed about 95 percent of the tumor. She then did six wks of radiation and temodar when the surgery had healed, and is now on her second cycle of temodar 310/5days. Her first cycle was difficult with lots of fatigue during and after the five day cycle. We have changed the anti-nausea meds in hopes of alleviating some of the nausea. Overall, her hair has started to grow back now two months after radiation and all her cognitive and language skills are normal intact. The big game changer hopefully here is a vaccine that was made using a heat shock protein technique using her actual tumor so that she is being given a total of 22 vaccines over the course of a year and a half. Her attitude and approach to live are inspiring and we live in the moment most of the time.

    Side effects
    Hi, I am trying to find out about delayed nausea and vomiting related to Temodar. My husband (62) was diagnosed on 9/1/2010 with a GBM. He had it removed on 9/6/2010 and then underwent the 6 1/2 weeks of radiation and Temodar. On 1/7/2011 he started with the 5 days of Temodar with the addition of another chemo agent, topotecan, on days 2-6. A day after he finished he was hit with the nausea even though he continued to take Zofran. Was this the case for your wife? I just hate seeing him feel so bad. The fatigue has been an issue as well. Thanks to anyone reading these posts. I welcome any information you can share. I am trying to stay positive.
  • mishamurphy
    mishamurphy Member Posts: 2

    GBMIV
    Hi Everyone, my wife was diagnosed with a frontal lobe mass in April, after complaining of massive headeaches for a few weeks, confirmed as gbm IV during surgery on May 24th. We were very fortunate to be treated at UCSF in San Francisco and she had a complete and successful surgery which removed about 95 percent of the tumor. She then did six wks of radiation and temodar when the surgery had healed, and is now on her second cycle of temodar 310/5days. Her first cycle was difficult with lots of fatigue during and after the five day cycle. We have changed the anti-nausea meds in hopes of alleviating some of the nausea. Overall, her hair has started to grow back now two months after radiation and all her cognitive and language skills are normal intact. The big game changer hopefully here is a vaccine that was made using a heat shock protein technique using her actual tumor so that she is being given a total of 22 vaccines over the course of a year and a half. Her attitude and approach to live are inspiring and we live in the moment most of the time.

    So similar!
    Hi summerjones,

    My mom, who's 52 years old, was diagnosed with Stage IV Glioblastoma in her frontal lobe on the right side in January 2011. She had a very successful surgery soon after at a hospital near home. Then she was lucky to have Chemo and Radiation done a UCSF as well. Both of which have just finished their 6 week courses.
    I don't really know what to expect from here. What did you experience with your wife?
  • tammymccracken
    tammymccracken Member Posts: 4
    amy020891 said:

    Hi
    Cathy,

    Thank you for the thoughts and prayers. We are all doing ok. He had an MRI on March 9, 2009. He was put in the hospital that same afternoon because they did another test and found blood clots in his legs. He had a surgical pocedure to put a filter in so the clots could not go to his heart or lungs. They can not put him on blood thinners for fear of hemmoraging in the brain. His MRI showed no growth and also no shrinkage.

    His joints and back are hurting him pretty bad. I am assuming that the cause is from the steroids.

    We are pretty much at a stand still. He has temodar 300 mg. for 5 days and off 23. The doctor tells us when he sees progression of the tumor he will put him on avastin....until then we just kind of keep things the same.

    Amy

    Identical stories...
    Amy,

    I am reading your posts and its as if I was writing them... my husband is 46, inoperable, personality changes, decadron... right down to the blood clots. (They have my husband on Coumadin right now to try to clear those...)

    Where do you live? I'm new and not too savvy at this but would like to exchange information with you.. I live just south of Atlanta, GA.

    Hope to hear from you soon...

    Tammy
    tammymccracken@bellsouth.net
  • hope4GBM
    hope4GBM Member Posts: 7

    It's happening so fast...
    My husband, John, who has been an athlete and coach his whole life, had a headache and a little nausea on October 17th. The headache never really went away, which was odd since he truly never gets headaches. He went to the doctor on Wednesday the 20th, was sent to have an MRI, and we discovered he had a 4 cm mass on his brain. Friday morning, we went to see Dr. Aulisi at Washington Center Hospital in D.C. who immediately admitted John. The tumor, he told us, was close to putting pressure on his brain stem, and they needed to operate as soon as possible. He told us it was likely a high grade.

    They operated Monday, October 25th and were able to get the entire thing out, plus a clear margin. Three days later, they confirmed it was a grade 4 tumor. With John healing so well we were able to go home later that day, just three days after surgery. That was Thursday.

    We have a 4 year old son, a 2 year old daughter, and an 8 week old baby boy. With the help of a wonderful friend, tonight we were able to all go trick or treating. I don't know how I am going to hold together-- I fluctuate from pretending nothing is wrong and making jokes, to snapping at the kids, to hiding so that I can cry. I have fibromyalgia and an anxiety disorder and am still feeling the affects from the third c-section. A wonderful community has swarmed around us and wrapped us in positivity and love, but I still feel lost and alone, angry scared bitter afraid lost...I don't know how to do this! I thought I'd look for a place like this to air some of this mixed up conglomeration of emotion, and appreciate any advice, insights, etc from those going through similar situations. Blessings from the universe/god to all of you and those you love...

    GBM - surgery 10/29/10
    My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
    This site has helped- I just read where one man has had GBM for 8 years.
    I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
    My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
    He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
    His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
    He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

    I'm here if you need to vent!
    Think of you often-

    Hope
  • DistancerunnerXC
    DistancerunnerXC Member Posts: 44
    hope4GBM said:

    GBM - surgery 10/29/10
    My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
    This site has helped- I just read where one man has had GBM for 8 years.
    I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
    My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
    He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
    His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
    He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

    I'm here if you need to vent!
    Think of you often-

    Hope

    I hear ya on the personality changes
    Our doc had me take my wife to a psychiatrist.
    The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
    She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
    Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
    All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
    21 months.
    See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
    What can you do?
    I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
    In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
    there, there i go again.
  • hope4GBM
    hope4GBM Member Posts: 7

    I hear ya on the personality changes
    Our doc had me take my wife to a psychiatrist.
    The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
    She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
    Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
    All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
    21 months.
    See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
    What can you do?
    I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
    In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
    there, there i go again.

    personality change
    WoW! Sounds like you are struggling and very angery. Luckily my husband and I have a wonderful open door of communication and he is - other than a worry wart and having short term memory loss - very much the same person he was before GBM. He is exercising, cooking some, driving now, and trying to adjust to not having much energy. One thing very bothering is that we realize he probably wont be going back to work, but we 'll have to adjust to that. We have faith that he is going to be the Poster Guy for GBM survival.
    Take care- be positive- good luck!
    Hope
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248

    I hear ya on the personality changes
    Our doc had me take my wife to a psychiatrist.
    The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
    She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
    Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
    All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
    21 months.
    See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
    What can you do?
    I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
    In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
    there, there i go again.

    house cleaning
    Dont be to hard on your self. I am a nurse a long with my sister having GBM. When I discharge patients from the hospital sometimes I tell the husbands that there wife cant do dishes, housekeeping etc for a couple of weeks they always get a good giggle out of it.
    (the wife that is). Believe me I know what you are going through. I have put my life on hold. Things that were important to me arent anymore. Its really hard for me to work and take care of others. Some how lately Im getting all cancer patients. My sister is in the hospital right now. The stress is over the top....
  • MAJW
    MAJW Member Posts: 2,510 Member

    I hear ya on the personality changes
    Our doc had me take my wife to a psychiatrist.
    The necrosis had been managed excpept for the cognitive problems but there are severe personality changes..
    She told the psychiatrist right up front that she did not want to do housework anymore and when asked who does it, said "he does it",,,and when asked whether she thought she should help since I work all day and all that..laughed and said "no"...
    Man, that made me mad. (and of course it should not have) and when her mom laughed about it and dismissed it, I hit the roof! (of course I shouldn't have)
    All she wants to do she admitted was sit in front of the TV with her Charlie Brown security blanket and stare into the tube (she dosen't actually watch the tv)
    21 months.
    See, you gotta recognize these feelings as a caregiver and do something to handle them..I handled them wrong this morning when I flew off the handle about it..
    What can you do?
    I'm looking into occupational therapy but I am quickly coming to the conclusion that A:LL therapies are useless and it's just plain up to the poor victim of this disease whether or not they come out of this fog.
    In the meantime, you have to understand that what you have is NOT a sspouse anymore..it's a time bomb or a kid..or a mill stone around the neck?
    there, there i go again.

    I hope...
    Your wife never knows you consider her a "milestone around your neck". My best friend just passed away 2 months ago from a Glioblastoma Multiforme Stage IV.....we all watched as we slowly lost the "person she was"...she fought this for 2 1/2 years....her personality changed, her memory was shot, she was had paralysis in her arm and leg....she was 52.....this can't be helped....this is considered a brain injury that can't be fixed....it's not a fog, something that she can "snap out of"! Don't you think she'd want to do ALL the things she did before illness struck her, if she could...I'd bet she be happy to trade off her illness for house hold chores....
    Do you have friends or family members that could help with household things, meals etc.? Ask them...the worse that can happen is they say no...people really do want to help...and since they can't help the patient, this is their way of helping ! We set up a meal plan for my friend and her family...people signed up for certain dates...usually every other day, as there is usually enough for left overs....
    Also find out about CLEANING FOR A REASON". They will clean once per month for four months for women under going cancer treatment...Then perhaps friends could fill in in-between...

    Thankfully my friend had the most amazing husband...as do I as I have battled cancer myself....You should get into a support group yourself or therapy as a caregiver...you might find the help you need....I know it's a terrible struggle to be a caregiver....
  • Beckymarie
    Beckymarie Member Posts: 357
    MAJW said:

    I hope...
    Your wife never knows you consider her a "milestone around your neck". My best friend just passed away 2 months ago from a Glioblastoma Multiforme Stage IV.....we all watched as we slowly lost the "person she was"...she fought this for 2 1/2 years....her personality changed, her memory was shot, she was had paralysis in her arm and leg....she was 52.....this can't be helped....this is considered a brain injury that can't be fixed....it's not a fog, something that she can "snap out of"! Don't you think she'd want to do ALL the things she did before illness struck her, if she could...I'd bet she be happy to trade off her illness for house hold chores....
    Do you have friends or family members that could help with household things, meals etc.? Ask them...the worse that can happen is they say no...people really do want to help...and since they can't help the patient, this is their way of helping ! We set up a meal plan for my friend and her family...people signed up for certain dates...usually every other day, as there is usually enough for left overs....
    Also find out about CLEANING FOR A REASON". They will clean once per month for four months for women under going cancer treatment...Then perhaps friends could fill in in-between...

    Thankfully my friend had the most amazing husband...as do I as I have battled cancer myself....You should get into a support group yourself or therapy as a caregiver...you might find the help you need....I know it's a terrible struggle to be a caregiver....

    Lotsa Helping Hands
    When my husband was in the hospice phase of his cancer, a friend setup a site for us on Lotsa Helping Hands. This was extremely helpful. It gives friends and family a place to sign up for tasks to help a family going through a challenging time. We had two meals a week delivered to our home. It was a trememdous help. You can list any type of task: cooking, cleaning, yard work etc. Members of your community can sign up online for a task. People want to help but don't know what to do...this gives them an opportunity to help and relieves some of the stress you are dealing with as a caregiver.
  • madisonmuzz
    madisonmuzz Member Posts: 13

    house cleaning
    Dont be to hard on your self. I am a nurse a long with my sister having GBM. When I discharge patients from the hospital sometimes I tell the husbands that there wife cant do dishes, housekeeping etc for a couple of weeks they always get a good giggle out of it.
    (the wife that is). Believe me I know what you are going through. I have put my life on hold. Things that were important to me arent anymore. Its really hard for me to work and take care of others. Some how lately Im getting all cancer patients. My sister is in the hospital right now. The stress is over the top....

    keep up the good work
    I enjoy reading your posts. You seem to be a very positive person. That is what I need right now. I am also a healthcare worker, Nuclear Medicine. It is so hard trying to give care to all your patients and then return home to do more healthcare. I would not change either part of my life, but if I could I would get rid of my husbands GBM in a heartbeat. I wish I would wake up and have it a very bad dream.

    I agree with your statement, "things that were important to me aren't anymore" and live one day at a time.

    Hope to hear your sister is doing better. I will keep you both in my thoughts and prayers. Sometimes it is harder on the caregiver than the actual patient. Take care of yourself too.....
  • sailaja
    sailaja Member Posts: 2
    hope4GBM said:

    GBM - surgery 10/29/10
    My husband age 56 also has GBM. I cant imagine what you are going through with 3 little ones. My heart and prayers go out to you. My girls are grown (30 and 28) and its been pretty hard on them. Maybe being so young is a blessing since they won't remember this rough time.
    This site has helped- I just read where one man has had GBM for 8 years.
    I also need support - I'm still in shock! We are going to Dana Farber in Boston and they are wonderful.
    My husband has had 2 good MRI's with no new cell growth. He has his next one in June.
    He is doing the standard treatment and is also on the trial drug- Zachiam every other day. He will finish his temodar phase in Dec and then just be on the trial drug as long as there is no change.
    His was in his right tempral lobe. and they got all that was visible and got a clear margin around it taking an area of about the size of a lemon. The Doctors thought that he had only had the cancer for about 7-8 weeks and he was also very fit( ran and lifted weights). We are 7 months out and doing well.
    He has personality change- worry is the biggest change that i see and he is extremely tired and never very happy. I'm hoping this changes ?

    I'm here if you need to vent!
    Think of you often-

    Hope

    Help
    CSN helped me a lot in understanding my dad's situation.

    My dad(70 years) has been diagnosed with left temporal GBM 4 on June7, 2011. He had undergone Craniotomy and excision of tumor on June 15, 2011 in India. He is soon to start radiation and chemo.

    I would be very happy if any one could email me some information on the Kosovo's Doctor to my email ID getsaila@gmail.com.

    Thanks
    Sailaja
  • micgrace
    micgrace Member Posts: 131
    I am very sorry
    I am mourning the loss of my wife to this dreadful disease. I know one does feel a sense of relief when it is finally over, but the torture during the diseases progression was horrific. I was hospitalised myself twice due to extreme anxiety.

    However, I did spend one night, alone with my wife and that was very memorable although she was in a coma and very briefly opened her eyes and recognised me.

    I am truly and deeply sorry, however you will find much support on this site and can PM me if needed.
  • micgrace
    micgrace Member Posts: 131
    I am very sorry
    I am mourning the loss of my wife to this dreadful disease. I know one does feel a sense of relief when it is finally over, but the torture during the diseases progression was horrific. I was hospitalised myself twice due to extreme anxiety.

    However, I did spend one night, alone with my wife and that was very memorable although she was in a coma and very briefly opened her eyes and recognised me.

    I am truly and deeply sorry, however you will find much support on this site and can PM me if needed.
  • johngiustino
    johngiustino Member Posts: 26
    husband's perspective
    Amy,

    While I consider myself as lucky as I can be with my GBM diagnosis (here is my background: I was diagnosed with GBM last October, had a 99+% resection, had standard radiation/Temador, and just finished my 6th round of 5/23 Temador and had a clean MRI last month.) I can tell you that I am but a fraction of the person I was before and a seizure a few weeks ago has made things worse. I can no longer drive or swim, I am more tired than before. It saddens me deeply that I cannot spend as much time with my active 5 and 7 year old sons because I am constantly fatigued and often nauseous from chemo. My wife and I spend a lot of time now trying to plan for various scenarios that may happen in the future and it is stressful. I hate the burden it has put on my immediate and extended family. I am only 43 and never expected to get hit with cancer. I have my positive days and my not so good days. There is a period of shock that takes some time to adjust to (the seizure just re-shocked us). I appreciate whatever time I can spend with the kids, even if it is just watching TV while I am half-asleep. Sometimes my wife has forced me out of my shell by visiting friends and in the end I am glad she did. It is important to make the best of your new normal. Medically, with your doctor's consultation, I would try to get him off the decadron, if possible, or lower the dosage. Weaning myself off of that drug made the biggest difference in how I felt. While on it, my joints also ached, and I put on a lot of weight.

    I wish you the best,
    JG
  • EDClarke
    EDClarke Member Posts: 5
    hope4GBM said:

    personality change
    WoW! Sounds like you are struggling and very angery. Luckily my husband and I have a wonderful open door of communication and he is - other than a worry wart and having short term memory loss - very much the same person he was before GBM. He is exercising, cooking some, driving now, and trying to adjust to not having much energy. One thing very bothering is that we realize he probably wont be going back to work, but we 'll have to adjust to that. We have faith that he is going to be the Poster Guy for GBM survival.
    Take care- be positive- good luck!
    Hope

    I love your optimism! You
    I love your optimism! You and your husband are an inspiration to me and mine. My huisband is 26 and we have a 1 year old daughter together. He just received his GBM diagnosis and is starting treatment next week. We are determined to fight this together and put in all that we have! If you have any words of inspiration to share about your experiences, please feel free to email me directly at KAC_Warrior@yahoo.com.
  • alexyj23
    alexyj23 Member Posts: 6
    My dad who is 54 was

    My dad who is 54 was diagnosed in April 2012 with GBM stage 4 in his left temporal lobe.  Because it is so deep in the tissue they are not able to remove it.  For the first few months after he found out he wouldn't move from his chair, then he got a burst of energy and had been doing great up until about a month ago.  We noticed he couldn't remember words on occasion and then about 2 weeks ago he got worse.  Now he can't remember a thought or get it out in words.  He had what looked like a stroke, but the doctors don't know what happened.  The left side of his face went paralyzed for 20 minutes and he had to go to the hospital.  He had 33 mini mal seizures on day at the hospital.  I hate seeing him go through this becuase it hurts so bad.  Not being able to have a conversation with your dad is gut wrenching!  I am also 39 weeks pregnant and am going through the worst emotional rollercoaster of my life!  I pray that my dad will be here to see his first grandson and that he will be coherent to understand what is going on.  He and my mom's 30th wedding anniversary is May 13th so I pray to God that he will stay strong and make it for my mom and his grandson and be able to talk and not be so confused.  I am so sorry for anyone going through this.  It hurts your heart.