glioblastoma-new diagnosis

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  • micgrace
    micgrace Member Posts: 131
    #22
    4theloveofmysis said:

    mri
    oH my gosh you have had 4 MRI's in 6 months and they just told you what it was.What did they think it was? I dont know what to say. I hope that you have a good support system. I only know the overwelming pain of being the sister of someone with GBM. It has been such a nightmare, I keep saying to my self wake ,come on wake up, this isnt happening...
    I can say that when we started the treatment I felt a sence of relief, that we were starting to do something about this. The waiting to get started was the hardest.
    Your appt next week is that with a general oncologist? Have you met with a radiation oncologist yet? We started radiation with in a few days of the oncology appt.
    My sisters tumor is deep with in the white matter of the brain they said that if the tried to operate she wouldnt be able to care for her self any more and not be able to move the left side of her body. She didnt want that.

    deep gbm
    Hi My wifes' GBM was very deep as well. Except she had already lost the movement on the RHS and some loss of speech as well. In her case surgery to remove the bulk was the best option as she wasn't going to lose the functionality as it was already lost.

    She is stable now and each physio session develops the limited range of movement she has left a bit more. It was very definitely touch and go, but with 99% + removed the chemo and radiation should work well and even achieve a cure (dare I hope for that??). Whatever way one looks at it a diagnosis of GBM is perhaps the nastiest dx one could get. Its a real nightmare I hope I can wake up from it. Not forgetting what it must be like for my wife and others who actually have this dreadful disease.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #23
    micgrace said:

    deep gbm
    Hi My wifes' GBM was very deep as well. Except she had already lost the movement on the RHS and some loss of speech as well. In her case surgery to remove the bulk was the best option as she wasn't going to lose the functionality as it was already lost.

    She is stable now and each physio session develops the limited range of movement she has left a bit more. It was very definitely touch and go, but with 99% + removed the chemo and radiation should work well and even achieve a cure (dare I hope for that??). Whatever way one looks at it a diagnosis of GBM is perhaps the nastiest dx one could get. Its a real nightmare I hope I can wake up from it. Not forgetting what it must be like for my wife and others who actually have this dreadful disease.

    mcgrace
    do you mind me asking where was the GMB ? How big was it ?
  • micgrace
    micgrace Member Posts: 131
    #24
    4theloveofmysis said:

    mcgrace
    do you mind me asking where was the GMB ? How big was it ?

    location GBM
    Hi The GBM was pressing into the left ventricle from the left parietal lobe, approximately tennis ball size. I would have thought the symptoms would have showed well before that size but they didn't.
  • SanDiegoPaul
    SanDiegoPaul Member Posts: 25
    #25
    itsme1 said:

    Chinese herbal tea
    May I ask, what is the name of the herbal tea? Or where do you get it from?

    I know you are going through a lot right now, but our family is too and we would appreciate anything that may help.

    This was prescribed for me by a Grand Master
    Grand Master Fu is certified level four in emei Qi Gong healing. The prescription has about 100 Herbs, and it was filled by a Chinese medicine market right here in town. Look to find a Qi Gong healer in your area... Mine also does acupuncture, which helps me a lot
  • SanDiegoPaul
    SanDiegoPaul Member Posts: 25
    #26
    4theloveofmysis said:

    how was the appt
    Paul did you have your appt? how did it go?

    not well
    the neuro-oncologist has prescribed six weeks chemo and radiation... With no prognosis for a cure, just that they may extend life for a few weeks to months. My goal is to accept both Eastern medicine practices and the Western medicine at the same time. this one of those situations that you can never practice or rehearse for.. Wife and I are kind of numb right now understandably.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #27
    SanDiegoPaul said:

    not well
    the neuro-oncologist has prescribed six weeks chemo and radiation... With no prognosis for a cure, just that they may extend life for a few weeks to months. My goal is to accept both Eastern medicine practices and the Western medicine at the same time. this one of those situations that you can never practice or rehearse for.. Wife and I are kind of numb right now understandably.

    Paul
    Im very sorry...We are in the same boat. Those numbers are just numbers. They have no way of knowing how your tumor is going to react to the radiation and chemo. What about avastin ? Did they offer you that? When will you start? I know its scary, but when the radiation and chemo start it was a good feeling for me anyway. I felt like we were doing something about it.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #28
    SanDiegoPaul said:

    not well
    the neuro-oncologist has prescribed six weeks chemo and radiation... With no prognosis for a cure, just that they may extend life for a few weeks to months. My goal is to accept both Eastern medicine practices and the Western medicine at the same time. this one of those situations that you can never practice or rehearse for.. Wife and I are kind of numb right now understandably.

    prognosis
    Hi, Paul.

    I read your post and my heart breaks for you and for your wife and family. I know what the doctor's predictions do to you. We went through this with our son David. I found this website that really encouraged me. I hope it helps you regain some measure of hope. Please check it out:

    http://livingwithbraincancer.com/default.aspx

    I believe that when doctors give a prognosis, they are basing it on statistics but they are really making what I consider a guess, going by what they have seen statistically. The statistics do not take into consideration the individual. The doctors do not know anything for an absolute fact. And there are people who beat GBM.

    I think you are making a wise choice to utilize both Eastern and Western medicines. Most of all, please keep a fighting attitude and do everything in your power to hang on to hope. I know that it is almost impossibly hard to do so, but it's so important to have some hope. We have been told that David's mental attitude affects his physical health, and I believe it. It angers me that the doctors say that, but then they strip away hope with their predictions. They just do not know...they are men trying their hardest...but they do not know....

    It's hard to find things in some of these posts, but I have read in previous threads about people who had a similar prognosis as yours and they are doing good and living beyond their doctors' expectations. I went back to page two on these posts and found a thread titled "glioblastoma multiforme grade IV" by mgreggsmith. He said that was told he had 1 to 18 months, with 12 months likely. He was at 53 months on March 14th, 2011, and still having clear MRIs and doing fine. I've read more reports like his too. Here's another link to check out:

    http://www.virtualtrials.com/survive.cfm

    My motto that I try to live by is "pray hard, fight hard, and hang on to hope." I will be praying for you and for your wife.

    Peace and blessings to you,
    Cindy in Salem, OR
  • micgrace
    micgrace Member Posts: 131
    #29
    4theloveofmysis said:

    Paul
    Im very sorry...We are in the same boat. Those numbers are just numbers. They have no way of knowing how your tumor is going to react to the radiation and chemo. What about avastin ? Did they offer you that? When will you start? I know its scary, but when the radiation and chemo start it was a good feeling for me anyway. I felt like we were doing something about it.

    4thelove of my wife (and others)
    Same here prognosis terminal, 6 - 12 months. But I don't believe that. I feel much the same way, that much better something is being done when radiation and chemo start. We have a meeting planned tomorrow for them to discuss what they plan on doing. Without the in-laws to cause all sorts of issues. Just myself, my wife and my son. My daughter is at boarding school and only comes home weekends. She doesn't like her mother there but is kept busy which is a good thing I suppose. It is her final year of school prior to university.

    A fellow GBM patient who has cognitive function put it this way, its like being made of crystal and suddenly running into a brick wall. All plans and aspirations have been smashed to pieces. Rather too apt. Well we are a tough breed in OZ and have a sardonic sense of humor in the face of the worst possible dx one can get.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #30
    micgrace said:

    4thelove of my wife (and others)
    Same here prognosis terminal, 6 - 12 months. But I don't believe that. I feel much the same way, that much better something is being done when radiation and chemo start. We have a meeting planned tomorrow for them to discuss what they plan on doing. Without the in-laws to cause all sorts of issues. Just myself, my wife and my son. My daughter is at boarding school and only comes home weekends. She doesn't like her mother there but is kept busy which is a good thing I suppose. It is her final year of school prior to university.

    A fellow GBM patient who has cognitive function put it this way, its like being made of crystal and suddenly running into a brick wall. All plans and aspirations have been smashed to pieces. Rather too apt. Well we are a tough breed in OZ and have a sardonic sense of humor in the face of the worst possible dx one can get.

    micgrace
    Hoping your meeting goes well. I dont want to believe the prognosis either. How can it be out of all the cancers out there why did we have to end up with this one...When we got the news of what we were really dealing with I told my sister. Well we knew that we were fighting a battle but now we are fighting a war...I will be there every step of the way. Not the plan I had in mind.I always though I became a nurse to help others, now Im wondering if God had it in mind for my sister...Its so hard to know what I know and do this, sometimes is a blessing and others times I wish I was in the dark.
    Our first round of 5 day temador is now delayed a week. Im so scared, there have been so many delays in this thing. Do they even care that its growing...They are waiting for better numbers first. This is just a process for them. Its a hour glass with the sand running way to fast for me...I want my sister that I had before this back. This GMB4 slipped in in the middle of the night and ripped our hearts out...Turned our lifes upside down. God please bless us all with miracles...Help please...
  • micgrace
    micgrace Member Posts: 131
    #31
    4theloveofmysis said:

    micgrace
    Hoping your meeting goes well. I dont want to believe the prognosis either. How can it be out of all the cancers out there why did we have to end up with this one...When we got the news of what we were really dealing with I told my sister. Well we knew that we were fighting a battle but now we are fighting a war...I will be there every step of the way. Not the plan I had in mind.I always though I became a nurse to help others, now Im wondering if God had it in mind for my sister...Its so hard to know what I know and do this, sometimes is a blessing and others times I wish I was in the dark.
    Our first round of 5 day temador is now delayed a week. Im so scared, there have been so many delays in this thing. Do they even care that its growing...They are waiting for better numbers first. This is just a process for them. Its a hour glass with the sand running way to fast for me...I want my sister that I had before this back. This GMB4 slipped in in the middle of the night and ripped our hearts out...Turned our lifes upside down. God please bless us all with miracles...Help please...

    the GBM in bed 10
    I really do think they tend to treat us in hospital as just a diagnosis in a bed. The chief doctor said its a real pity, what a shame your wife has a GBM. The sands of time are definitely running but as usual here too they are waiting for scores to improve. If I don't go in and it is quite a task for me to get there, no-one really seems to do much other than making sure she is comfortable. The worst part is knowing that all treatments for this disease are taken as being pallative in nature with the disease itself being listed as incurable. There must be a reason to this nightmare. Perhaps it is spur me to develop something to overcome it for others. Yes, I do have that type of ability and the location to perform it. Surely some good has to come out of this rather than yet another life cut short for no point.
  • BabsOregon
    BabsOregon Member Posts: 30
    #32
    SanDiegoPaul said:

    This was prescribed for me by a Grand Master
    Grand Master Fu is certified level four in emei Qi Gong healing. The prescription has about 100 Herbs, and it was filled by a Chinese medicine market right here in town. Look to find a Qi Gong healer in your area... Mine also does acupuncture, which helps me a lot

    BabsOregon
    Paul,

    My husband was just diagnosed with GBM last week and, like you, we are in shock. His is also in the motor strip and inoperable. We have tons of support but it is really hard to find real information about what other people have experienced and are hearing from their doctors. My husband (Pat)is starting radiation and chemo next week. He will also start the Avastin, which the ongologist thought would reduce his motor weakness.

    Thank you for your posts. Best wishes.

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