husband has gbm

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

I don't even know where to start. Especially after reading many of the posts on this forum...where there are so many brave and courageous people.

This is our 2nd time around with cancer. My husband, who is 43, had stage 3b colon cancer in 2006. he had surgery and chemo... all went well....
Until Dec.2007...he started having headaches and some dizziness every morning. Treated by 3 doctors for a sinus infection.

Finally on Feb. 21 he had a cat scan of his head because the docs finally listened to us about his symptoms of : slow thinking, slow speech and grasping for words. Immediatly after the scan he was admitted to the hospital with a very large brain mass.

Soooooooo he now has 20% of the cancer left in his brain...too close to his speech center to fully resect. He has mid-line shift and the tumor partially compressed his left lateral ventrical (still have to research that)

Rob started radiation...on the 17th of march..my birthday Rolling Eyes

...
we dont quite know about the temodor yet...I had to spend 3 1/2 hours on the phone yesterday fighting with his ins. co. inorder to have them go ahead and pay for it...so we didn't have to come up with $8000 out of pocket. I B***** long enough to get it done. yay

I have NO illusions about this insidious cancer. I am however numb to the core of my being. We have only been married fro 7 years and my Rob is my hero and best friend and the love of my life. If I could I would take this from him in a heartbeat.

Right after surgery he was doing much better, but already i see deficits cropping up.
I am scared and depressed and angry. Lucily i have a ton of support from his family and mine...and friends that are dedicated to helping me care for him....
but I am so glad i have found you all...I hope I can help you all as much as you have already helped me.

love and peace, Eve

laycswms · New User Joined: 15 Mar 2008 Posts: 4

Eve,
I am so so sorry to hear about your husband. The fact that you have already been through a similar process makes you such a strong woman. Kudos to you for fighting the insurance company! YOU GO GIRL! Cool

Be an advocate for your husband! My dad's last session of chemo & radiation was yesterday, and he says he can tell that his words come out a bit stuttered and that he is shuffling as he walks. I however, haven't noticed these. The only advice I can give is that you do your best to distract him from thinking about the mass in his brain (fairly impossible, I know), but if you can get even 20 minutes of true carelessness a day, its been a good day!
I'll be keeping you in my thoughts!
_________________
My Dad is strong enough to beat this!

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

Day 4 of radiation...temoder arrives tomorrow!

So did anyone start out with whole brain rads and then have it trimmed down to a "boost"? This was a surprise to us...the whole brain thing. I know his brain was infiltrated with the fingers of the cancer....i've looked at all his scans and you can see it.

I keep trying to find a case similar to Rob's, so I can get an idea as to where we stand with how much time he has left. Seems his GBM is fairly advanced as he had three connected areas that looked like mickey mouse and one very deep 2cm area that could not be resected. The tumor itself was 7cm.

This treatment is the only one Rob will undertake...the colon cancer chemo last year was awful and I know he will not go through anymore. He also has nodules in his lungs that are probably mets from the colon cancer....but the docs aren't even disscussing that.

Also this morning, while taking a shower, he had an uncontrolable shaking in his right arm, tumor is on the left...could that have been a seizure?

by the way laycswms....thanks for replying...best wishes to you and your dad. Yes I am strong....my 2 boys are in the military ...my youngest, a Marine just left for Iraq not to long ago....my other son is a couple of hours from me and is a rock.

It is my family and friends that are keeping me sane right now.

prayers and love to all, Eve

ksplat · Posted: Thu Mar 20, 2008 2:24 pm Post subject: Re: husband has gbm

Dear Eve

I am so sorry to hear about Rob's diagnosis & wanted to let you know my prayers & thoughts are with you.

Such a young man to have been dealt a 2nd blow by cancer. Life is so unfair & I'm sure you can't quite believe it yourself? It's times like these when you feel like locking yourself away & leaving all your troubles behind. Unfortunately, you must do the opposite & face all of your fears & worries....you have the power, strength & courage to do this, with the support from yr family & friends.

As has been stated you have been down a similar path just recently (you must be reeling with this 2nd cancer diagnosis) & this serious illness at such a young age & with your beloved Husband is a bitter pill to swallow!! I won't even talk about outcomes from this cancer, but I know everyone's story is totally different for each individual. As you will discover there are several different treatments available for brain tumours & Rob's medical team will be making these decisions.

I can't imagine the obstacles you Americans have to face in regards to health insurance? We are so blessed here in Aust with our Federal Health System. All power to you Eve in overcoming your insurance obstacles!!

I agree with you on the shaking that Rob had in his R arm, this most definitely would have been a seizure (my Bro has experienced very similar symptoms but on his L side from R frontal lobe tumour) & you should address this with Rob's Dr. If Rob isn't already taking an anti-seizure med then this should be followed up.

GBM's are nasty tumours that can spread out & cross to other parts of the brain. I have read about WBR (whole brain radiation) but can't actually recall whether it was here or on another website? I do hope someone on this forum can answer this question for you?

Welcome to our forum, this site has been a great resource of comfort, support, information & love since finding out about my Bro - Mark's - GBMIV just over 1 yr ago. I'm certain your experiences & strengths will be a valuable asset to this forum. Please keep in touch.

Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Fri Mar 21, 2008 4:01 am Post subject: Re: husband has gbm

Oh Eve

my heart goes out to you and your husband. Do you realize how rare it is for one person to have two major primary cancers? Not unheard of but very rare. I am so sorry that your husband has to be one of those who have to face cancer twice.

If you read my story (links in my signature block), you will see that I am not a stranger to brain cancer. I had a glioma grade II in 1992 that recurred in 2005 as a grade III. My mother died in 1998 two months after being diagnosed with a GBMIV.

Is your husband taking anything for seizures? Seizures (mild) where the first sign I had of my glioma.

Eve, you and Rob and in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

Hi Angie and Jim,
Yes Rob is taking Keppra...twice a day. He thinks he took a double dose of tylenol...he doesn't remember....so i told him to stay away from the pills....I'll give them to him. Rolling Eyes

Today he feels a lot better.

His Temodor(sp?) arrives today...so we will get started on that. fun stuff!

We are fortunate to be in central florida where we have really great doctors and state of the art treatments. But as i said Rob won't be operated on again or do anymore chemo. He doesnt want to be a test subject and feel ill all the time...he just wants some time to enjoy his life even if it is only for a few months. Or (sigh) weeks.

Anyhow, you all have a great day.
hugs, Eve
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

I have been holding off on posting this..but the more I think about the more confused I get.
Bear with me...K?

02/21/08 pre-op MRI: 7.0cm x 3.3cm with multiple cystic components left temporal lobe)

02/22/08 80% resection (I am not so sure about that..maybe 80% of one tumor)

02/27/08 DX GBMIV

03/17/08 start rads
03/24/08 start temodar (had to fight with ins co)so we started one week late

04/18/08 emergency MRI..found out temodar dosage was wrong on bottles

05/19/08 1st MRI post rads and temodar
neuro-onc says tumor is stable. just read off of report. he hadn't viewed the scans yet. Report says mostly stable(?) mostly?

05/27/08 meet with radiologist...he sees scans and report. Says Rob's hair will grow back soon...then sits down and says "Rob will NEVER have a good MRI" also says "If Dr. Nick(neuro-onc) told you the tumor is stable, then I GUESS he knows best" Then basically see ya, good luck.

Here is what i dont get. The imaging center was supposed to compare the latest MRI with Rob's post-op MRI. Instead they compared it to the emergency one done just one month previous to the latest one.

ALSO...the measurements pre-op were 7cm x 3.5cm....the latest MRI shows the measurement to be 7.3cm X 3.1cm.
So if you do the math...if 80% was resected...hasn't the gosh darn thing GROWN!!!???

I realize you all cant give me any answers..and perhaps I should remain blissfully (sarcasm) ignorant. The whole series of events from treating a sinus infection for 2 months , GBM, wrong dosage of temodar and now, not comparing the MRI's correctly. ARRRRGGGGGG!

any how thanks for listening, I just needed to get it down in writing.
hugs, Eve
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

brainman · Posted: Mon Jun 02, 2008 11:29 am Post subject: Re: husband has gbm

Eve, it is very confusing Sad

. My only advice it for you to talk with his medical team and state your questions be them.

GBMIV do grow very rapidly. However, that second measurement may have just been measuring the "hole" and not new tumor growth.

As always, you and your husband are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

momaton · Regular Joined: 18 Mar 2008 Posts: 14 Location: central fl

Thanks all...for the replies.

Brainman...The Mri said it was solid:( oh! who the heck knows? We don't see the neuro-onc for another 4 weeks...so I guess I'll have to wait for answers.

Rob is on his 3rd day of 5/23 temodar. Today is rather difficult. a little nausea, despite the pills...and he is extremely tired...sleeping for 15 hours a day. Other than that ...all is well.

I always have more questions than answers...

I dont even know if this is possible or if there is some place i can look, please let me know.

I'd like to see some statistics concerning the various aspects of GBM

IE;

Prognosis concerning total resection vs partial resection

location of tumor in relation to prognosis

tumor size at dx vs tumor size after resection and life expecptancy after resection

life expectancy after partial resection, location of tumor and radiation with concurrent temodar.

Then all of the above.. prognosis with 5/23 temodar.

I am sure someone has compiled this information somewhere....any ideas where to look or whom to ask?

My husband is currently doing fairly well on his first go round with 5/23 temodar. he is sleeping 15 hours a day...but we have also reduced his steroid to 2mgs a day. not sure at this point what is going on with the fatigue.

he said he feels really bad today Sad

he went through heavy duty infusion chemo for colon cancer last year and never felt this exhausted.

Cognitivley he is very, very slowly going down hill. (slowly, but evident)

I am trying to keep things as stable as possible around here.....I just dont have a clue as to what is happening...and I have a hard time letting go of the details i need some answers too.

thanks,Eve

As some of you may have seen i post my same questions to another website...need all the input i can get
_________________
"Human beings are always trying to fix things. Our hardest lesson is seeing perfection in the imperfect world."

from a little Zen book that I own.

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Eve,
I've been away for a awhile, so first, I am sorry to hear about your husband. You are in my prayers. July marks 3 years since my dad was diagnosed with GBM, and he has been gone since Nov 2005, but I still come on hear to see how everyone is still doing. I do recommend this website: http://www.brainhospice.com/
I didn't find this until after my dad passed away but it was still very comforting to know that we did what we could and that the steps were as described here. This site kind of walks you through the stages and what to expect in each.

My prayers are with you,
Michele
_________________
Michele

ksplat · Posted: Wed Jun 11, 2008 4:54 pm Post subject: Re: husband has gbm

Dear Eve,

Just wanted to let you know you continue to be in my prayers & thoughts.

Questions are good as long as you can get answers...I do hope you can find a resource that can answer these difficult questions for you. As you know everyone is different with a diagnosis of GBM so if you read something ,don't take it as gospel because your Husband won't necessarily have the same outcome.

I read a very good article the other day about FATIGUE on the Americal Brain Tumour Association website. You can download or read these articles online. They are very informative & easy to read/understand, even some suggestions to cope with FATIGUE! If you haven't checked it out then you should. I was reading about it for my Bro-Mark. He battles FATIGUE on a daily basis & has for many months now. It can't be easy for our Men to feel like this, everyday!

Mark has been on Temodal since diagnosis in Feb 07. Firstly, he was on a daily dose up until his 2nd craniotomy in May 07 (tumour only debulked). He had a period of about 6wks with no visible growth (after debulking) & no chemo. Then in Sept 07 started on the cycle of 5days on 23 off. Up until Feb 08 when max amount of Gliadel (chemo) wafers were placed in tumour bed. Then 2mths off Temodal until beginning of May. MRI showed some tumour growth & a cyst surrounding tumour. Mark has been prescribed 2 x mthly cycles of Temodal & then next MRI beginning of Jul.

You're love & dedication & advocacy for yr Husband is inspiring to say the least. Keep up the good work & fight the good fight against this BEAST!

God Bless
Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

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