My Husband Diagnosed with Stage 4 glioblastoma, aggressive

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My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Mollyny on Sun Mar 04, 2007 12:00 AM

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My husband has been recently diagnosed with Stage 4 glioblastoma, aggressive.  To all who have a spouse with this, or any type of brain cancer, or to those who have it, how much information did you wish to hear about it?  I am trying to be very positive for him, and he has been very strong and positive since hearing the news, which I had to be the one to tell him, not the doctors.  I told him the truth in the most compassionate and kind way I could, without telling him survival statistics, which he does not want to hear, and wants to fight with all he has.  Doctors here have given me no hope, I am the one carrying the negatives.  I do have him enrolled in the program at the Philadelphia Cancer Center of America.  Has anyone here been there?  What are some of the best treatments you have recieved, what types of chemo are any of you recieving?  Does nutrition help?  Please, please help me to understand more what you are dealing with, going through, and I do ask your prayers!!!!!  We do have a strong faith in Jesus Christ our Savior, asking for a miracle, but knowing a miracle could be what HE chooses, not us.  What do those here with some success with this very type of diagnosis/prognosis have for me/him?  Thank God I found this site.  MollyNY

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Mollyny on Sun Mar 04, 2007 12:00 AM

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On 3/4/2007 Mollyny wrote:

My husband has been recently diagnosed with Stage 4 glioblastoma, aggressive.  To all who have a spouse with this, or any type of brain cancer, or to those who have it, how much information did you wish to hear about it?  I am trying to be very positive for him, and he has been very strong and positive since hearing the news, which I had to be the one to tell him, not the doctors.  I told him the truth in the most compassionate and kind way I could, without telling him survival statistics, which he does not want to hear, and wants to fight with all he has.  Doctors here have given me no hope, I am the one carrying the negatives.  I do have him enrolled in the program at the Philadelphia Cancer Center of America.  Has anyone here been there?  What are some of the best treatments you have recieved, what types of chemo are any of you recieving?  Does nutrition help?  Please, please help me to understand more what you are dealing with, going through, and I do ask your prayers!!!!!  We do have a strong faith in Jesus Christ our Savior, asking for a miracle, but knowing a miracle could be what HE chooses, not us.  What do those here with some success with this very type of diagnosis/prognosis have for me/him?  Thank God I found this site.  MollyNY

I should add, we are not at the Philadelphia Cancer Center yet, we live in southwest NY.  At the moment he is in rehab, as he can not walk due to the damage from the mass and edema in his brain, trying to get another part of his brain take over for the damage that has been done. 

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Our3sons on Sun Mar 04, 2007 12:00 AM

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Welcome, Molly.

I wouldn't focus on the prognosis. Prognosis is based on statistics that do not include the most recent treatments. Doctors are human, and only God knows when our time is up here on Earth. As a Christian, our hope is not in our doctors or survivor stories . . . but rather eternal life in Heaven through knowing Christ. He may choose to heal our husbands in Heaven and not here on Earth. We do thank God, though, for the guidance and wisdom he gives our doctors. Your husband's doctor sounds negative, so, if I were you, I would pursue treatment elsewhere by a neuro-oncologist at a brain tumor center.

My husband is eight months out, and he is doing really well. You can read our story at www.eloefamily.com.

I am praying for your courage, strength, and peace as you travel this road.

Blessings,
Bridgett

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Pirenep on Sun Mar 04, 2007 12:00 AM

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Molly,

it seems to me you are farther from Philadelphia than from NY city (whereabouts is SW NY?) As Bridgett said, you might want to explore a brain tumor center close to you.

My father is being treated at the Columbia University Brain Tumor Center (right off GW bridge). He is 76, and he is almost 11 months out, due to start his 10th cycle of 390 mg of Temodar. Since at this point he is on the "golden treatment" for GBM, I can't say much more about his protocol, but I have heard only the best about his Dr. and the center.

Irene.

 

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Jules88 on Sun Mar 04, 2007 12:00 AM

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MollyNY, It is very normal to get hung up on the time frame thing when you first get the diagnosis.  You are where we were 8 months ago.  Gbm is very unpredicatable.  No doctor knows the outcome for any patient.  You will hear stories of patients given only months to live and they are going on years instead!  How old is your husband and where was his tumor located?  Keep searching until you find a doctor who will fight this damn thing.  A good doctor will steer you away from concentrating on the prognosis and will help you fight!!!  This message board has been a Godsend for me.  I check here every day.  Another great message board is yasg.com   Stands for young adults surviving glioblastoma.  There are alot of great people there too.  Feel free to ask anything on these message boards.  Everyone is so willing to help. 

My husband was diagnosed june '06 when he was 43.  His was located on his left frontal lobe and had it totally resected.  He is just going to start his 7th cycle of temodar this week.  He had an MRI last week that is not showing any tumor reccurence!!!  We have learned to just take one day at a time, that's all any of us can do. 

                                                       Julie

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Gaylec on Mon Mar 05, 2007 12:00 AM

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I found this to be helpful when my husband was first diagnosed.

 http://www.virtualtrials.com/faq/

Virtualtrials.com also had some other good information regarding clinical trials, etc.

Our oncologist told us not to focus on time yet, until we are at that point. My husband had surgery on October, had the tumor almost completely resected, and has had stable MRI's so far.  What is left is about 3mm  - a little spot, left.  He is only on Temedor so far (not Avastin, or any vaccines), so explore your options on what course of treatment is available to you.

You will find people on this board who are very helpful, with all sorts of questions.

 God Bless, and may friends, family and other earthy angels help and assist you in your battle against this enemy.

 Gayle

wife of John, diagnoses in October 06 - 53 years old

 

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Marmie on Mon Mar 05, 2007 12:00 AM

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On 3/4/2007 Mollyny wrote:

My husband has been recently diagnosed with Stage 4 glioblastoma, aggressive.  To all who have a spouse with this, or any type of brain cancer, or to those who have it, how much information did you wish to hear about it?  I am trying to be very positive for him, and he has been very strong and positive since hearing the news, which I had to be the one to tell him, not the doctors.  I told him the truth in the most compassionate and kind way I could, without telling him survival statistics, which he does not want to hear, and wants to fight with all he has.  Doctors here have given me no hope, I am the one carrying the negatives.  I do have him enrolled in the program at the Philadelphia Cancer Center of America.  Has anyone here been there?  What are some of the best treatments you have recieved, what types of chemo are any of you recieving?  Does nutrition help?  Please, please help me to understand more what you are dealing with, going through, and I do ask your prayers!!!!!  We do have a strong faith in Jesus Christ our Savior, asking for a miracle, but knowing a miracle could be what HE chooses, not us.  What do those here with some success with this very type of diagnosis/prognosis have for me/him?  Thank God I found this site.  MollyNY

Hi Molly, everyone here knows exactly what you are going through.  But as others have said, don't get hung up on all the negative statistics.  My husband was diagnosed in January of 2005 with GBM IV and his doctors said to go home and get your life in order because you won't  be here in six months.  It was horrific to hear.  Well, damn those statistics.  Here we are over two years later and he has had no recurrence of tumor.  He had surgery, radiation, and 15 months of Temodar.  He discontinued treatment in July of 06 and so far so good.  So my advise is to find a good brain tumor center near you if possible and stay focused and positive about his treatment protocol.  I think my husband's attitude and alot of luck has had much to do with his well being.  Take care and you will find alot of support here. 

 

Fondly,

Patty

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Mollyny on Tue Mar 06, 2007 12:00 AM

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On 3/4/2007 Our3sons wrote:

Welcome, Molly.

I wouldn't focus on the prognosis. Prognosis is based on statistics that do not include the most recent treatments. Doctors are human, and only God knows when our time is up here on Earth. As a Christian, our hope is not in our doctors or survivor stories . . . but rather eternal life in Heaven through knowing Christ. He may choose to heal our husbands in Heaven and not here on Earth. We do thank God, though, for the guidance and wisdom he gives our doctors. Your husband's doctor sounds negative, so, if I were you, I would pursue treatment elsewhere by a neuro-oncologist at a brain tumor center.

My husband is eight months out, and he is doing really well. You can read our story at www.eloefamily.com.

I am praying for your courage, strength, and peace as you travel this road.

Bless you.
I know exactly what you are saying, and I do believe in the Lord Jesus, as does the family, and he is the strength that I feel, holding on to me.  How long have you been in this situation?
I

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Bubba_Ray on Tue Mar 06, 2007 12:00 AM

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On 3/6/2007 Mollyny wrote:

 

On 3/4/2007 Our3sons wrote:

Welcome, Molly.

I wouldn't focus on the prognosis. Prognosis is based on statistics that do not include the most recent treatments. Doctors are human, and only God knows when our time is up here on Earth. As a Christian, our hope is not in our doctors or survivor stories . . . but rather eternal life in Heaven through knowing Christ. He may choose to heal our husbands in Heaven and not here on Earth. We do thank God, though, for the guidance and wisdom he gives our doctors. Your husband's doctor sounds negative, so, if I were you, I would pursue treatment elsewhere by a neuro-oncologist at a brain tumor center.

My husband is eight months out, and he is doing really well. You can read our story at www.eloefamily.com.

I am praying for your courage, strength, and peace as you travel this road.

Bless you.
I know exactly what you are saying, and I do believe in the Lord Jesus, as does the family, and he is the strength that I feel, holding on to me.  How long have you been in this situation?
I

 

Molly,

Let the Lord handle this situation. My wife has GBM stage IV diagnois in March 2005, two surgeries, radiation and now on second cycle of temodar. Live in Alabama and go to Duke every two months. Her cancer has spreaded across her brain. I leave it to the Lord now.  Its okay to look on the internet and get as much information as you can...but open the bible and see the promises of God..... I was just like you..scared, searching every where on this subject. But now I leave it to him. Pray for peace. My wife is only 43 and we have three kids. Since Mar 2005 this has devestated my family. But, like I say give it to God,

Ed 

 

RE: My Husband Diagnosed with Stage 4 glioblastoma, aggressive

by Mollyny on Mon Mar 12, 2007 12:00 AM

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Thank you so much.  We have changed our mind about where he is going, and will be going to Sloane-Kettering in NYC.  Finalizing things in the morning, and have most of his things packed.  They let him come home for a few days before treatment starts out of town.  So glad for the time, but have had so much company and want more time just with him.  I may have to tell people to give us some time alone together.  Will read your story.  Keep us in your prayers, and thank you. 
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