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stage IV GBM

bugs_mommy
Posts: 24
Joined: Dec 2012

my husband was diagnosed in april 2011 with GBM IV and since then had 2 operations, 8 plus seizures without waking in between, he has done radiatio, and the cyber knife, along with temadal, and his mri from dec 28th showed its growing fast and its large, so here we are in the hospital, they are giving him 12mg of decadron instead of his regular 4 mg, plus on anti convultants and on temadal every night, they said they r trying to get the swelling down then they will discuss our options. he is only 29, we have two beautiful daughters, is it worth having another operation and risk even more damage, like his walking and speech and memory again, its already bad and it could make it worse..if anyone has advice plkease don't be shy :)

mighty6
Posts: 47
Joined: Sep 2011

bugs_mommy,

 

Sorry to hear your husband's condition. My heart aches when I heard that you have two young children. since you encourage people not to be shy of giving suggestion, i will give my two cents if in the same boat:

. a sucesseful  surgery is known to add precious time (in hope for a cure or better options later). I believe this is true for any type of braint tumor patient.

. any other tretment options (Including Temodar) can only be effective on small percenage of the patients.

. that being said, daily low dosage Temodar does work for my husband. He is 17 months post-surgery and still doing good. Minimum side effect. Quite a few trials came out supporting this schedule for patients failed the standard 5/23 Temodar schedule.

 

Is  your husband in relatively "ok" health status (except the tumor)? is your surgeon's very skillful in brain tumor surgeries? Is the tumor location good for another operation? Is yes for all, I will tend to vote yes for another surgery. I might keep the daily Temodar too.  He is so young. keep fighting!

 

Wish you and your family all the best!

 

--Jane

 

bugs_mommy
Posts: 24
Joined: Dec 2012

thnak u for being honest, my husband was very active, played hockey, baseball, and the normal daddy stuff, the  Doctor came in .. Its not good , either leave it grow and he will b a vegg or operate and live another 4 months or so. Without the operation its only a matter of time before he becomes paralized because its growing to the other side and with the operation its a 20 % chance of becoming paralized.

The doctor is very good, the best their is around here, he has done his last 2. 

mighty6
Posts: 47
Joined: Sep 2011

When there is option, there is still hope. I will pray for the best outcome for you!

bugs_mommy
Posts: 24
Joined: Dec 2012

we just told the neurosugion that we r going with the operation, now to just wait for the date and just hope its a good out come and we will have another couple months as a family :) just so greatful we got to have christmas and new years :)

wanye
Posts: 11
Joined: Nov 2012

 

Dear Bugs_mummy

 

My sister has had two operations and is on a break from Temodar. It truly is a difficult and heart breaking journey for us all.I agree with mighty6 any fighting chance is worth taking. And who knows you might receive a miracle and have him around for another Christsmas and another new year. I'll be praying for you and your family. I believe in miracles may God be merciful to give you one even as I ask him for one for my sister.

bugs_mommy
Posts: 24
Joined: Dec 2012

they took my husband in at 10 30 this morning and finnaly came out at 4 15 so about 5 hour operation, the doctor came out and told uood chunk out ts they they were able to get a good chunk of the tumor out, that way theres lots of room for it to grow without too much pain. i went in to see him and he looks so good :) i am so proud of my husband, he has overcome so much for only 2 years old. anywyas the doctor also said when the looked at his ct scan after the operation there was a bit of bleeding of the opposite side from where they operated said they dont know what its from and nothing they can do but keep a close eye on him, i also noticed they had a little tube in the incesion draining blood, now would that be the blood they r talking about ? or is that just the blood from what they did , and if the blood dont go away what does that mean? becaus ei know thats not good .

mighty6
Posts: 47
Joined: Sep 2011

bugs_mommy.

 

This is a good news that you husband came out surgery all right! You really shoudl be proud of him!

"A bit of bleeding" sounds like a concern. but from what i heard from other patients's experience, minor bleed could resolve itself, I will stay alert on anything abnormal before that, but not panic yet. I think the little tube should be just to drain the blood from the surgery  cut. Of course your surgeon knows better. I always write doen all my questions and ask the doctors whenver get a chance. I am sure you are doing thsi already.

Stay hopeful! let' us all continue to fight!

 

-- Jane

bugs_mommy
Posts: 24
Joined: Dec 2012

The doctor said the same thing u did jane :) thank u for making me at ease.

We are out of PACU and now into NACU , 33 hours after surgery his face is swollen on the left side from the surgery, he can not open the left eye. He still has trouble talking, but says random things sometimes that does not make sense, he still vomits but its more like a mucus, he seems so uncomfortable, all he does is move around and try to pull out the tubes, so he is tied down :( 

Now guess we wait for his CT scan tomorrow to show us the bleeding :( I really hope it goes away

-janelle

bugs_mommy
Posts: 24
Joined: Dec 2012

update on my husband is not good news, the surgeon said that if in a couple days he gets better then the blood clot went away on its own and then its about 4 months until the tumor grows back and takes over, and if he does not get better in a couple of days then the blood clot did not resolve and only a matter of time.

bugs_mommy
Posts: 24
Joined: Dec 2012

my husband is now moved to the hospice care, for the last week he hasnt been talking much, once in a while he will nod yes or no but just stares at u most the time, food and drinks dont go down so easy him.

astrange610
Posts: 2
Joined: Apr 2013

I know what you are going through. It's not my husband, but my dad. He was diagnosed in Nov. 2012 and was the idle patient, recovered from surgery and chemo/radiation was a breeze. He did everything right. He started getting really sick beginning Feb. 2013 and MRI showed the tumor was completely back and bigger with a new tumor on the opposite side. It was down hill from there. 

The doctor was honest that surgery will not fix anything and be more damaging then helpful. My dad doesn't want experiemental chemo and after he got severly dehyrdated from too much vomiting the hospital confirmed the new tumor was growing rapidly. He too was put on hospice care, and went from a man that built his own home to wearing diapers. He can't hold a conversation, very emotional, talks to angels, and thinks that he is cured. He "cures" everyone around him and recently has become sensitive to noise. He doesn't want anyone talking. His blood pressure has dropped, won't eat or drink. 

I truly understand your pain. I have yet to cry in public over this as I feel I need to stay strong for him and mostly family. I am a cancer survivor from childhood cancer and they all look to me to see my reaction. They know I will be openly honest and I show no emotion to allow them to interpret information in their own thinking. 

Just to see someone you love unconditionally go through this and know there is nothing you can do.. It literally aches my heart. I researched and found natural medicines that he took.. I'm just at a loss at this point. Its learning to accept the things you cannot change. I just feel like I should be able to change this if I could just find something that works. There are hundreds of people on here that found something that worked for their loved one and they are still around.. It's just so irritating! 

I'm sorry I'm rambling.. Ultimately my intention was to let you know if you every need to talk I am here for you because although this is your husband.. I still think about the wedding my dad won't be there for, or the birthdays of my son he will miss, future children.. Daily talks.. My email is ashley.strange@ymail.com. Sorry for all the rambling!! 

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