Gbm

Firstly i'm so sorry that all of you along with me have to go through such trauma, to see someone we love suffer so much.  My partner of 13 months was diagnosed with gbm grade 4 on the 1st of feb 08.  The symptoms began with headaches and visual trouble in the left eye because the tumor is located on the right side of the brain near the thalamus thus being imoperable.  My partner is 31 and 3 days after the biopsy she began to have seizures which scared her so much that she refused to go to the bathroom because thats where seizures seemed to occur.  She simply refused to walk for a month or so.  She received radio therapy while staying in hospital and a lot of this time i almost had to force feed her and for a while she lost her sense of direction and memory.   During the radio treatment she also received oral chemo.

She has since come home and for a while she was doing well, baking cakes etc to fill in her days but now she has little to no interest in anything.  She fills her day by watching tv but not caring what it is.  The past 2 weeks she has been very very tired sleeping up to 17 hours a day. I've never endured such trauma of seeing someone in so much mental pain, its like they are living with a death sentance and nobody can do a single thing about it.

I have stopped believing what the doctors tell me bc i believe they often dont tell you everything and sometimes they are not 100 percent honest.As much as i want my partner to live i dont want her to suffer, its such a catch 22 situation.  Id really like to hear peoples thoughts or suggestions no matter how blunt they are as i have found this to be the best place to learn more about this awful condition.

Peter  

Peter,

I am so sorry your partner is dealing with this disease at such a young age. I understand the pain you are enduring for watching her go through it. My dad was diagnosed at age 64 and he survived 1 year. It was the most heart breaking thing to watch...and simply be helpless. However he did quite well in the beginning of it. I am wondering if your partner is on steroids? Sometimes the fatigue can be something simple as a medication change...and also the seizures can be controlled by meds. My dad had to endure 3 very bad seizures before they finally had the right medication to control them. He was taking Dilantin alone when the seizures occured..it wasn't until they added Keppra that he was able to get that part in control. I have heard many people talk about Decadron doses and either increasing it or decreasing it when a patient is showing odd symptoms. Sleeping 17 hours a day doesn't sound right to me unless her tumor is growing back already?

I'm sure this must be so hard for you to handle, sounds like your relationship was pretty brand new. Hang in there. This message board can supply alot of support for you in the future.

Take Care,

Jill

Peter,

I can sympathize with you as my significant other has "withdrawn" in the same manner...20+ hours of sleeping and/or on and off TV.     I bring up the subject of depression quite often.   He has refused anti-depressants because of the remote chance of seizures.

I would like to think that spending what time he has left with our 22 mo daughter would push him to try harder to re-engage in life...but he interaction is limited there as well as he wears down so easily.

His tumor is in the left thalamus and inoperable too.   This is also so very discouraging...  Cancer sucks but brain tumors suck even more if that is possible.   

Hang in there.

Jill

Hi Peter,

First I want to say I'm sorry about your wifes diagnosis. My mother in law too was diagnosed in February. She had a rough start but is doing great right now. I agree with Jill about the swelling, it sounds like she may need steroids or if shes' on them may need them upped. Part of what she's feeling is most likely depression. If she talks to her family doc they may be able to give her something for it.

In the meantime, just try your best to keep her hopes high. It's very easy when diagnosed with this monster, to just lay down and give up. And as caregivers it just tears our hearts out to see their bad times but don't forget that there ARE good times (cherish them! )

But never give up. There is only ONE who decides when it's her time and He will watch over her for now....

God bless you and her on your journey and I wish you the best~ 

On 6/14/2008 Peter78 wrote:

Firstly i'm so sorry that all of you along with me have to go through such trauma, to see someone we love suffer so much.  My partner of 13 months was diagnosed with gbm grade 4 on the 1st of feb 08.  The symptoms began with headaches and visual trouble in the left eye because the tumor is located on the right side of the brain near the thalamus thus being imoperable.  My partner is 31 and 3 days after the biopsy she began to have seizures which scared her so much that she refused to go to the bathroom because thats where seizures seemed to occur.  She simply refused to walk for a month or so.  She received radio therapy while staying in hospital and a lot of this time i almost had to force feed her and for a while she lost her sense of direction and memory.   During the radio treatment she also received oral chemo.

 

She has since come home and for a while she was doing well, baking cakes etc to fill in her days but now she has little to no interest in anything.  She fills her day by watching tv but not caring what it is.  The past 2 weeks she has been very very tired sleeping up to 17 hours a day. I've never endured such trauma of seeing someone in so much mental pain, its like they are living with a death sentance and nobody can do a single thing about it.

I have stopped believing what the doctors tell me bc i believe they often dont tell you everything and sometimes they are not 100 percent honest.As much as i want my partner to live i dont want her to suffer, its such a catch 22 situation.  Id really like to hear peoples thoughts or suggestions no matter how blunt they are as i have found this to be the best place to learn more about this awful condition.

Peter  

The Doctors don't know all.... you can feel it.  The mental pain is so incredible with this type of cancer that I can not get a grip on it.  My brother has suffered beyond what any human should have had to endure.  First Viet Nam and now this - he doesn't deserve to end his life in such a horrific way.  He knows he is going to die and leave one 10 year old son and one newly married 35 year old son.  He'll never get to be "grandpa" How sad is that?

Thanks for posting that message.  I was not able to articulate it as well as you did.  Thanks again.     This brain tumor thing is beyond crap.  I agree with the following statement and feel it should be made into a bumper sticker: 

"Cancer sucks but brain tumors suck even more if that is possible"

mikesister

Hi Jill

Thank you so much for your message, it was very helpful.  Anne endured a lot of seizures to begin with and they have stopped now but one was so bad that she actually stopped breathing, she is on a wide variety of drugs from keppra to decadron and pain killers.  She is so mentally exhausted and it all happens so fast.  Nobody has given us a time frame  but i know her tumor is a grade 4, from what i've read anywhere up to a year is a reasonably accurate guess. 

Thank you so much once again

Pete 

Hi Jill,

i sit here thinking how bad all of this is for me and i think it could not be worse then i get some mail from you that gives me a reality check, I'm finding it so hard to cope with just my partner and I but you have a 22 month old which probably makes it even harder. You must be a very strong person and my heart goes out to you, yes cancer does suck but could anything be worse than a brain tumor? - i dont think id wish such a thing on my worst enemy, nobody deserves to endure such pain and heartache.  If ever you wish you to email me or ask a question please feel free

hang in there jill and try to keep smiling

peter 

Another thing to be aware of is the possible need for a shunt. I encoutered this with my father. We totally thought there was tumour progression so I pushed for an MRI to see what was going on. No progression but something called hydrocephalus (i found out the technical name on my own haha) for us normal people it's basically a blockage of the venticals that is preventing the CSF (cerebraspinal fluid) from draining properly thus causing alot of the same symptoms that tumour progression would present as it is causing pressure in the brain. Apparantly it can happen quite frequently with brain tumour patients. After my dad had his surgery after about 2 weeks he was back to how he was before all these changes started happening. All this came about about 4 1/2 months after his original diagnosis and initial surgery.

 I'm not saying this is what is going on with your partner but it is something to be aware of.

Renee

My Mom is dealing with her second bout of GBM.  At the age of 70 she was diagnosed and through surgery, chemo and radiation she was cancer free for 7 years.  The tumor is back now and it's inoperable.  She was diagnosed last December.   I agree with the posters who suggested checking the seizure meds.  My Mom was on dilantin first and it was awful for her.  They changed it to Keppra which seems to work very well.  She is also on decadron to reduce the swelling in the brain and it seems to be working for her.  She is sleeping a lot and seemed to lose interest in getting out of bed and would just stare at the TV.  She's in a nursing home now and didn't want to get out of bed and go to any activities.  I talked to her nurse/doctor about an antidepressant and they started her on one a little over 2 weeks ago. When I went to see her Saturday, she was in the activity room watching a movie.  I'm not sure if the antidepressant is the reason, but I'm hoping so.  Sunday she seemed to have lapsed back into staying in her bed, but maybe she was tired from the "outing" on Saturday.  Anyway, something to look into.

I wish you good luck.  It's been very hard watching my Mom go through this.  I can understand the paradox of what to pray/wish for for them.  My Mom is not in pain and I pray that she stays that way.  But I know it must be awful for her to be in her condition.  She was always so independent and took care of everyone else.