Fiance diagnosed GBM stage IV on July 9th

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Fiance diagnosed GBM stage IV on July 9th

by Pangie on Wed Aug 22, 2007 12:00 AM

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Hi,

 My Fiance was diagnosed with GBM stage IV on July 9th.  Well, he had surgery on the 9th, then biopsy results 10 days later with the GBM IV.

 We had just purchased a house on July 1st, and are planning to get married in November.

 As of today, he is on his 16th Radiation treatment and on Temodar for 1 month at 150 mg.  He is also taking 300 mg of decadron 3x a day. I am praying that this horrible tumor goes away.  The neurosurgeon couldn't remove very much of the tumor... just enough for a biopsy.

 My Fiance refused to think something was wrong with him, after I had been telling him for a week that something was different about him.  I couldn't put my finger on it, but something about him was odd.  He just didn't seem focused.  After having a CT scan the docs told us that he had a large brain tumor.  Then after having multiple ct scans... they told us it was probably a meningioma.  My fiance can't have MRI's because of a pacemaker.  Then... after going under for what we thought was easy brain surgery... we are told that it is cancer.  The docs thought it was metastatic, but was eventually ruled out.  Now we know it's primary, and it's a Glioblastoma MultiForme stage IV.

 Now, here I am, researching all I can, to find out what we are faced with.  The people at his Radiation Oncology are very sweet and kind and are always positive.  But, I think that is their job.

 My Sweetie lost his hair this past weekend.  He acted like he didn't care, but I know it was scary.  I cried (inside) as I used the clippers to take off whatever hair was left.  How sad.  My sweetie is 56 years old and faced with this.

 We are hoping to get married during his break from radiation... around thanksgiving.

RE: Fiance diagnosed GBM stage IV on July 9th

by Dttmusic on Wed Aug 22, 2007 12:00 AM

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Believe me, I do know how hard this is for the both of you. My husband is 56 and had his tumor removed 3/12/07. We have been married 3 years. He had seizures one night and that is how we discovered the tumor. One month after total removal of the tumor they found two more spots, but after radiation all he has at this point is treatment damage and no new tumor. His was in the left frontal lobe.

After the shock wore off we have been able to take things day by day and we have been able to find a balance between hope and reality. Please know that you are not alone and if you have any questions please don't hesitate to ask.

He is on an experimental drug plus 5 days of Temador then 23 days off.He only lost his hair right where the radiation hit but other than that he's fine.

Take care and God Bless

Diane

husband dx 3/12/07 left frontal lobe

RE: Fiance diagnosed GBM stage IV on July 9th

by Brandoncg on Wed Aug 22, 2007 12:00 AM

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I can certainly relate to your story and I am very sorry about your fiancé's diagnosis and all that you both are now going through. My wife was diagnosed with a large mass in her brain this past February. We had only been married 6 months and are in our early 30's. Life changing is the best way to describe what the past 7 months have been like. We had surgery, then radiation with temodar. Now we are facing a lot of complications from fluid build-up and additional surgeries to drain the fluid and to correct un-healing surgical wounds. It's turned into more of an emotional nightmare than could be imagined at times. Still we are very positive about the future. You have to be at times like this. And I think when your undergoing so much change (i.e. buying houses, moving, getting married, etc...) on top of a serious health crisis like this, it all gets so magnified. Please know that others have you in their thoughts and you are not alone. And the best advice I can give is to seek counseling for yourself. Its so hard to digest all your emotions with out an ear to bend, someone with an objective opinion to help steer you in the right direction.

RE: Fiance diagnosed GBM stage IV on July 9th

by VA_Husband on Wed Aug 22, 2007 12:00 AM

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On 8/22/2007 Pangie wrote:

Hi,

 My Fiance was diagnosed with GBM stage IV on July 9th.  Well, he had surgery on the 9th, then biopsy results 10 days later with the GBM IV.

 We had just purchased a house on July 1st, and are planning to get married in November.

 As of today, he is on his 16th Radiation treatment and on Temodar for 1 month at 150 mg.  He is also taking 300 mg of decadron 3x a day. I am praying that this horrible tumor goes away.  The neurosurgeon couldn't remove very much of the tumor... just enough for a biopsy.

 My Fiance refused to think something was wrong with him, after I had been telling him for a week that something was different about him.  I couldn't put my finger on it, but something about him was odd.  He just didn't seem focused.  After having a CT scan the docs told us that he had a large brain tumor.  Then after having multiple ct scans... they told us it was probably a meningioma.  My fiance can't have MRI's because of a pacemaker.  Then... after going under for what we thought was easy brain surgery... we are told that it is cancer.  The docs thought it was metastatic, but was eventually ruled out.  Now we know it's primary, and it's a Glioblastoma MultiForme stage IV.

 Now, here I am, researching all I can, to find out what we are faced with.  The people at his Radiation Oncology are very sweet and kind and are always positive.  But, I think that is their job.

 My Sweetie lost his hair this past weekend.  He acted like he didn't care, but I know it was scary.  I cried (inside) as I used the clippers to take off whatever hair was left.  How sad.  My sweetie is 56 years old and faced with this.

 We are hoping to get married during his break from radiation... around thanksgiving.


My heart goes out to you and your fiance. We are about the same age (50) and my wife was diagnosed on June 2. Just like you I wore out the internet and every friend I know in the medical profession. Everyone responds differently to the treatments, but we were lucky in that my wife experienced minimal side effects. The Decadron dose you noted seems very high (my wife was on 4 mgs x 3 per day) and they work wonders except you should watch how he tolerates them. There can be some side effects.

 You have the most important ingredient of the treatments, which is the love you have. I will be thinking of you. My wife has completed the radiation and Temodar and has a couple of weeks before going on the maintenance chemo; so if I can answer any questions for you, do not hesitate to ask.

 

C

 

RE: Fiance diagnosed GBM stage IV on July 9th

by Wreed on Wed Aug 22, 2007 12:00 AM

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Hello,

 I too am very sorry to hear about your fiance.  My father is 59 and was diagnosed in June 2007.  He has good days and bad.  The worst side effect that he has experienced is blood clots in his leg.  I sometimes worry more about those than his tumor.  He is almost finished with radiation, and he is about to start temodar, which I am very skeptical about.  I want to believe it works, but hear much better things about Avastin and CPT-11.  I would just look at all of your options.  Make sure you do not believe everything you are told, and seek out a doctor that you and your fiance are comfortable.  I have read so many wonderful success stories on this website and others.  There are people out there beating this everyday.  You are not alone.  You can have many more years to spend with your future husband.  You just have to keep a positive attitude and faith.   I am getting married in Nov as well, and I am excited for my dad to be there to walk me down the aisle.  You will get a lot of support on this website.  I will keep you in my prayers. 

 Wendy

RE: Fiance diagnosed GBM stage IV on July 9th

by Pangie on Mon Aug 27, 2007 12:00 AM

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Hi all,

 

Ok, I was wrong about the Decadron dosage.  For some reason I thought he took 300 mg 3 x daily.  That was wrong.  sorry.  My sweetie takes 4 mg 3 times a day.

 Today is my Fiance's 20th radiation treatment.  We found out that he will have about 6 more weeks of treatments (5 days a week).  He will also take 150 mgTemodar every day until this entire course is done (about 6 more weeks).

 I have noticed that my Fiance is very edgy.  He is quick to anger and snap at people, sometimes he even snaps at me.  He also has very big mood swings.  Sometimes he is so happy his entire face lights up, and then other times I find him just crying. The decadron sure does mess a person up.

 Does a person with this GBM have to take steriods forever?

 Thank God for this site.  I read it non-stop.  I don't feel so alone anymore.

We were supposed to be married June 2008.  I think we are moving up the date a little bit, to this coming November.

 My Fiance is 56 and I am 42... we don't have any reason to wait.  I am angry that we didn't get married last summer.  We decided to wait another year, so we could buy a house.  Now we have a house, and he has this darn GBM.

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