home free

My husband has had clear MRIs for 29 months and counting.  He is not the guy he was before, he is always mad and and hurtful to everyone, but we brush it off because we still have him.  

We have MRI every 90 days and I use to hold my breath but now there is never any changes before we go so I feel he will be a long time survivor thank God.

Has anyone been clean that long and a new tumor showed up?  The first few times I would think that his manor meant there was something there and then we would go to doctor and he reasured me everything was fine.  Am I the only caregiver that has this tumoil?

Thanks for all of you on this sight it is a great support!

 

 

 

 

Hi Peggy,

I am so glad for your husband's clear MRI's but also sorry to hear about his unhappy feelings... which seem to be taken out on loved ones. I know I've read about brain injury and disease affecting mood and emotion and affect of a person. I think I would ask the doctor to consider evaluating him for possible meds that might help. Even if your husband says quite adamantly that he is NOT depressed or NOT anxious, a good doctor can explain that it's really just chemical... not something he should feel bad about... it's not his fault, it's just a side effect of the tumor. Nobody expects him to just snap out of it or cheer up. We all want to be alive but it's even better to be alive and at peace with the world.

Sarah

mom of Andy 26 dx GBM/PNET 1/09

 

If you are reluctant to mention the situation to the doctor in front of your husband, then call the doctor privately when your husband isn't around.  A lot of doctors don't want to deal with emotions.  If it doesn't come in a test tube, they want nothing to do with it.  So, if your doctor is not perceptive enough to pick up on the problem, you may have to hit him/her over the head with it to get through to them.  You should not have to live with the added problem of ill-temper and neither should your husband.  I know it is not something he can help by willing himself to act differently, but maybe the doctor can help.  I cannot imagine NOT being depressed with all your husband has been through.  You must be a kind-hearted soul to take it all in stride, but really, don't you want your husband to have as much happiness as possible?  I'm sure you do & I'm sure he would want the same for you.

Jackiekay

To answer your questions, yes it can be gone that long and come back.  Example:  David Bailey, the singer, songwriter, composer.  He was (GBM) tumorfree for 10 years when he had a reoccurence just a few months ago.  There is so much we don't know about GBM.  That's one reason you will seldom hear physicians use the word cure when talking about this disease. 

My husband made it 27 months before he showed recurrance.  He is presently trying to become part of a phase three trial at Methodist here in Houston.  He is changed, but he is here and for that I will be forever grateful.  I keep telling myself that all we have to do is this day and we try not to look ahead.  Wishing you all the best.  Keep fighting.