Tough Day

It is getting so hard to keep hoping things will get better.  Since my husband started avastin/cpt-11 he has developed horrendous headaches although the MRI came out clear.  We went to a new neurologist who thinks he has developed migraines & if that is the case, he's had a non-stop and ever increasing migraine since early June.  Also, his balance has gotten worse.  I just started back to work on Friday after taking 6 months off to be with him.  Today I found out that he has fallen every day that I have been at work.  The only reason I found this out is when he fell today, he fell head first into a large stone wall by our house and knocked out his front teeth.  Now he is in the hospital.  I finally headed home after midnight.  They were pumping him full of morphine when I left because the head pain has escalated dramatically.  I left because I thought maybe it would help him fall asleep.  I desperately want him to continue with treatment because I want him here with me.  He's only 46 years old.  At the same time, I feel selfish asking him to do it because he hurts so badly.  We just don't seem to be getting anywhere.

Jackiekay

On 8/27/2008 jackiekay wrote:

It is getting so hard to keep hoping things will get better.  Since my husband started avastin/cpt-11 he has developed horrendous headaches although the MRI came out clear.  We went to a new neurologist who thinks he has developed migraines & if that is the case, he's had a non-stop and ever increasing migraine since early June.  Also, his balance has gotten worse.  I just started back to work on Friday after taking 6 months off to be with him.  Today I found out that he has fallen every day that I have been at work.  The only reason I found this out is when he fell today, he fell head first into a large stone wall by our house and knocked out his front teeth.  Now he is in the hospital.  I finally headed home after midnight.  They were pumping him full of morphine when I left because the head pain has escalated dramatically.  I left because I thought maybe it would help him fall asleep.  I desperately want him to continue with treatment because I want him here with me.  He's only 46 years old.  At the same time, I feel selfish asking him to do it because he hurts so badly.  We just don't seem to be getting anywhere.

Jackiekay

Hi Jackiekay, I'm sorry for what you're going through. My mom who is 76 has GBM IV. Not sure what your husband has, but I know it's tough. I've been her caregiver for a year. Your husband should probably has the last say so, but explain things to him. Don't feel awful... you love him and you're obviously doing everything you can. My mom was just like your husband with balance and coordination so they put her on decadron today. I hope it helps. Has he been on decadron? A few hours after she took it for the first time, she seemed much... better. Your husband is young, hang in there. Best wishes, Maria

Dear JackieKay,

As you know I have been pulling and praying for you both.  I am so very sorry to hear of this latest news.   It is just so very scary to hear that your husband is falling and now hurting himself.  What are the doctors saying about this?  Has your husband had another MRI to see what is going on recently?   This sounds like a more serious problem than just migraines. 

You have every right to want to fight as hard as you can for your husband,and of course follow what ever wishes Scott may have for himself.  Please keep me posted as I am praying very hard for you now.

Donna

Jackiekay, My sister was having the same problems with migraines and was taking avastin. She was bed ridden and was in so much pain it hurt just to look at her. The avastin did after a while shrink the tumor a bit and she regained some of her balance and did not have as bad of migraines.

She finally was able to have it removed and she is now dealing with a tumor on her liver. It was a terrible experience with the Brain surgery. I feel ashamed that I knew my sister could see the horror in my face when I saw what they did to her afterwords. But she is much better and she even went for a trip to a cottage last weekend which is just amazing. I don't want to give you false hope as it is different for everybody but my thought are with you.

Derek.   

Thank you all.  The people closest to us care, but do not really understand like you all do.  He is still feeling badly today.  They want to keep in the hospital and move him to the PT floor.  He is fighting that plan.  I'm just at a point where I no longer have any idea what to do.  Last night he asked the ER nurse to give him 1,000 mg of morphine and to walk out of the room and let it do its thing.  I spoke to her and said I want social work or psych to do an eval.  He moved to a regular floor & I told them the same thing.  I talked to the nurse this morning, she said it wasn't even noted in the nurse notes, but she would communicate that.  Nobody from either dept has been up.  I feel like I need to go in the hall and start shrieking to get some attention, but then they'd probably just give me a psych eval which might not be a bad idea either.

Jackiekay

Derek,

I am happy to hear your sister is doing better.  How long was she on avastin?  He's had 5 infusions and wants to stop already.

Jackiekay

Jackie, I'm so sorry to hear that Scott has been suffering with such terrible headaches and that he took such a bad fall. I know this is difficult for you.I too think thiis is more serious than a migraine.

I have seen your posts to others and I know your strong and will be able to do what is best for Scott.

I'm praying for you and Scott.

Laura

JackieKay,

I am still thinking about you & Scott today and I am praying you have gotten some answers or help as of now.  Maybe you should pull a fit like Shirley MacLaine did in the movie Terms Of Endearment, that ought to get their attention.  Does your hospital have a floor just for oncology or neurology problems?  When my husband was in the hospital he spent time on both of these floors with doctors & nurses who understood the feelings and problems you are facing now.  The ER is what it is and they make you wait for an eternity for answers that seem somewhat questionable until the right doctors get involved on the right floor. We out here understand how overwhelmed you are right now.

Donna

JackieKay:

 Is there a chance he is taking Keppra???  My dad was put on Keppra following his brain surgery, and he did quite well with it initially, but as time passed, he started having more and more headaches.  We got the whole "migraine" talk and they added even more medicine for that, but the headaches continued to worsen over the next several months to the point that Dad was taking Oxycontin & Oxycodone continuously, which left him strung out.  His MRI's all kept coming back good.

Finally, I just insisted that they take him off the Keppra and see what happened (he had never really had any seizures, so we had no way of knowing if her really needed the Keppra after the surgery, but it is common practice after brain surgery).  After finally ahving to get very harsh with the doctor, they decided to wean him off.  The first day of weaning, there was a signigicant difference.  By day 3 when he went off it completely, the headaches were gone, and they never returned.  Dad ended up passing away from complications unassociated to the headaches, but the good news is that he got rid of those horrible, debilitating headaches.

If he is on Keppra, insist that they take him off and see if the headaches go away.  I wish we would have thought to check it out months earlier, for Dad's sake and for ours.

best of luck...brenda (daugher of Leo Thompson, Gliosarcoma -10/02/38 - 01/30/2008)

Thanks for sending me a private message to read this.  You were correct.  I had not seen it.  We will start weaning him off keppra in the near future.  This was already in the works, but not because they think it is the cause of the headaches.  They are replacing it with topamax which is used to treat both migraines and seizures.  I hope this change helps him.  He had an MRI today at my insistence & hopefully we will know more by Tuesday.

Jackiekay