Is This The Beginning Of The End Or Just A Setback???

Husband diagnosed with GBM on August 2007, surgery+temodar, temodar for 4 months (did not help), Avastin+Cp11 for 4 months (after 2 months considerable shrinking, after another 2 months the tumor was regrowing), two weeks ago we started BCNU. A week ago he started having headacks and got more and more confused. MRI showed a stable tumor but growing swelling. He was in the hospital since Thursday getting IV decadron (4mg x 4 times a day) and pain killers when needed. He is getting better as far as the confusion and disorientation but still has the headacks.

I am wondering if this is how the end starts. Since I am working full time and want to take time off to spend with him toward the end, it is important for me to know more or less how much time is lest. I am already spending more quality time with him but I am running out of days off and I want to keep enough to the end. The doctors keep saying that it is hard to tell how things will develop from here. Was anyone in the situation I described and can tell me what happened next? I know each person is different but in average we all going through the same nightmare.

By the way, I expected this swelling to start since we stopped with the avastin. I bagged the doc to combine the BCNU with avastin but he refused since they don’t have this protocol at MSKCC. I have an app at duke after our next MRI (they can’t do anything now since BCNU stays in the body for 6 weeks) but I am not sure how well he’ll function by then. Unfortunately, the less functional the patient is the less options he has as far as clinical trials (that is why we need to be careful when reading results of clinical trials. There is a considerable bias in the selection of patients – but this issue for another posting…)

Thank you all and god bless,

Ariel

Ariel:  Oh my gosh....this is eactly what we dealt with last fall when my dad was taking treatments.  They kept telling us there was no enhancement and that everything looked great, but my dad, who was one tough cookie, was suffering headaches sometimes days at a time, and the only relief he got was with Oxycontin and Oxycodone (yes, they had him taking both at the same time, because the headaches were so bad). 

Then, I read a post on here about someone who was taking Keppra (an anti-seizure medication they often give to GBM patients) and were having headaches and when they stopped the Keppra, the headaches went away.

Well, I went to my Dad's next doctor's appointment and told them my concerns, but they said, "no, that can't be the cause.  Not a side effect of Keppra"....so, for another month, the headaches continued.  Finally, I demanded that my mother tell the doctor that she wanted to go off the Keppra and at least see if the headaches subsided.  Finally, the doctor said we could try it for two days and come back.  In two days, the headaches disappeared.  When we went back, the doctor expressed a fear that dad's seizures would return, at which point in time, we told him that Dad had never had a seizure, and was put on the medication after his brain surgery.  So, they kept Dad off the Keppra, and I swear to you that he did not have another of those bad headaches again.  We lost Dad in January to complications, and the only regret I have about the last year of his life is that we did not get Dad off the Keppra faster, so that the last year of his life was filled with good things instead of feeling like crap all the time because of the headaches.  Maybe some people need Keppra, but if there have been no seizures, and he is taking Keppra, you might try to convince the doctors to take him off for a while and see if the headaches disappear.  Best wishes!!!!!!!!!  brenda

I would be cautious about using up all remaining time off.  I spent January on vacation, then signed up for FMLA and used up 11 out of 12 weeks of FMLA, because they told me he likely would not make it through January.  But he is still about the same as in January.  Now I am vack working and sort of in a bind if things deteriorate, not much time off left.  Be sure to save some time, then go back to work if possible.  I was lucky because they let me go back half time, and  because we have a  great sitter 8 hours a day so I can work.  But I have just about a week vacation left and a week FMLA. 

They don't know how long, no matter what they say.  It boggles my mind that his MRI looked so bad in January but he is still about the same in July.  But it's a good problem to have because I just can't let go of him, and since he isn't in much pain, for now it's OK.  I wanted to slap a hospice nurse the other day who said "have you told him it's OK to go?" I guess I might be selfish, they seem to want him to let go, but we still have some good times; or am I kidding myself?

One caveat--he has a slower growing anaplastic astrocytome (grade 3) which might be why the doc's prognosis estimates are wrong--more patients have a grade IV which progresses faster usually.

Dear Ariel, I am so sorry your husband has this. I will pray for you. My mother just passed away yesterday from GBM. She was diagnosed this past November. I'm upset now and can't write very much right now, but GBM was a terrible rollercoaster ride for my mother and our family. They said numerous times that she only had a few days left and she hung on for months. I am a teacher and they said in May she only had 2-3 days left. I took a leave of absence from work (for the end of the school year) and came up to Jacksonville to be with her and to help take care of her. I've been here the entire summer, and then yesterday, July 21st she went to heaven. She was an award winning author and began blogging her journey in November when she found out. My dad began writing daily when she no longer could. Feel free to look up her site. Just google her name: Kristy Dykes and it's the first site that pops up: Christian Love Stories. I miss her so much. She was an amazing lady. I will pray for you and your husband. My mother's journey was difficult, the brain controls everything, so over time she had problems with her memory and confusion, and then went on to be bedridden for almost three months, but, thank goodness she never had siezures and she died peacefully. Things could have been worse, so I am thankful for that. Take care.

--Julie (from Tampa)

Hi Ariel,

When I lost my Dad things there were two distinct stages.

The first was very fast. One day he was doing well-- then next day headaches and we were in the hospital, a few days later he was unable to walk. The tumor had spread that fast and into his spine.

 Second stage was much slower. He was never able to walk again after that-- and he continued to withdraw. They tried increasing drugs, and giving him stuff to treat a "depression" as they called it-- but from my standpoint it was just the tumor taking over my Dad. I didn't want him pumped full of drugs and asked that he just stay on what he needed to be on to manage the symptoms. From there on he remain in Paliative Care for four months.

My Dad was a fighter-- but I noticed major changes when I thought the tumor started taking over rapidly-- he was no longer the Dad I knew.

I would say as long as your husband has the "fight" in him-- I'd keep charging on-- and don't give up-- I've seen lots of other miracles since losing my Dad.

On 7/22/2008 cozymel wrote:

I would be cautious about using up all remaining time off.  I spent January on vacation, then signed up for FMLA and used up 11 out of 12 weeks of FMLA, because they told me he likely would not make it through January.  But he is still about the same as in January.  Now I am vack working and sort of in a bind if things deteriorate, not much time off left.  Be sure to save some time, then go back to work if possible.  I was lucky because they let me go back half time, and  because we have a  great sitter 8 hours a day so I can work.  But I have just about a week vacation left and a week FMLA. 

They don't know how long, no matter what they say.  It boggles my mind that his MRI looked so bad in January but he is still about the same in July.  But it's a good problem to have because I just can't let go of him, and since he isn't in much pain, for now it's OK.  I wanted to slap a hospice nurse the other day who said "have you told him it's OK to go?" I guess I might be selfish, they seem to want him to let go, but we still have some good times; or am I kidding myself?

One caveat--he has a slower growing anaplastic astrocytome (grade 3) which might be why the doc's prognosis estimates are wrong--more patients have a grade IV which progresses faster usually.

Cozymel,

 Like you I've heard many people say we should be sure to let our loved one know it's okay to go.  My husband knows that I won't give up fighting for him and I think he gets strength from that because I can see the lines in his face ease when we talk about the future and other possible treatments.  But he also knows that when it's time for him to go I intend to be by his side easing his mind.  I know that he worries if I'll be okay without him and to be honest I know it'll be hell - he's all I know - and I don't look forward to being alone and without him.  But I will be here and I will be without him and when he's gone I won't be able to see or touch him anymore and he won't be coming back. 

I say enjoy your time together...keep each other strong...keep communication open...and he'll know when he's ready to go.

On 7/24/2008 tgthr27 wrote:

 

On 7/22/2008 cozymel wrote:

I would be cautious about using up all remaining time off.  I spent January on vacation, then signed up for FMLA and used up 11 out of 12 weeks of FMLA, because they told me he likely would not make it through January.  But he is still about the same as in January.  Now I am vack working and sort of in a bind if things deteriorate, not much time off left.  Be sure to save some time, then go back to work if possible.  I was lucky because they let me go back half time, and  because we have a  great sitter 8 hours a day so I can work.  But I have just about a week vacation left and a week FMLA. 

They don't know how long, no matter what they say.  It boggles my mind that his MRI looked so bad in January but he is still about the same in July.  But it's a good problem to have because I just can't let go of him, and since he isn't in much pain, for now it's OK.  I wanted to slap a hospice nurse the other day who said "have you told him it's OK to go?" I guess I might be selfish, they seem to want him to let go, but we still have some good times; or am I kidding myself?

One caveat--he has a slower growing anaplastic astrocytome (grade 3) which might be why the doc's prognosis estimates are wrong--more patients have a grade IV which progresses faster usually.

Cozymel,

 Like you I've heard many people say we should be sure to let our loved one know it's okay to go.  My husband knows that I won't give up fighting for him and I think he gets strength from that because I can see the lines in his face ease when we talk about the future and other possible treatments.  But he also knows that when it's time for him to go I intend to be by his side easing his mind.  I know that he worries if I'll be okay without him and to be honest I know it'll be hell - he's all I know - and I don't look forward to being alone and without him.  But I will be here and I will be without him and when he's gone I won't be able to see or touch him anymore and he won't be coming back. 

 

I say enjoy your time together...keep each other strong...keep communication open...and he'll know when he's ready to go.

Amen I just love what you are saying about keeping lines open and assuring him you haven't given up looking at other treatments but he also knows when the time comes you will be with him then too.  I feel the same way.  Praying for you, Gob Bless you

On 7/24/2008 grannie2 wrote:

 

On 7/24/2008 tgthr27 wrote:

 

On 7/22/2008 cozymel wrote:

I would be cautious about using up all remaining time off.  I spent January on vacation, then signed up for FMLA and used up 11 out of 12 weeks of FMLA, because they told me he likely would not make it through January.  But he is still about the same as in January.  Now I am vack working and sort of in a bind if things deteriorate, not much time off left.  Be sure to save some time, then go back to work if possible.  I was lucky because they let me go back half time, and  because we have a  great sitter 8 hours a day so I can work.  But I have just about a week vacation left and a week FMLA. 

They don't know how long, no matter what they say.  It boggles my mind that his MRI looked so bad in January but he is still about the same in July.  But it's a good problem to have because I just can't let go of him, and since he isn't in much pain, for now it's OK.  I wanted to slap a hospice nurse the other day who said "have you told him it's OK to go?" I guess I might be selfish, they seem to want him to let go, but we still have some good times; or am I kidding myself?

One caveat--he has a slower growing anaplastic astrocytome (grade 3) which might be why the doc's prognosis estimates are wrong--more patients have a grade IV which progresses faster usually.

Cozymel,

 Like you I've heard many people say we should be sure to let our loved one know it's okay to go.  My husband knows that I won't give up fighting for him and I think he gets strength from that because I can see the lines in his face ease when we talk about the future and other possible treatments.  But he also knows that when it's time for him to go I intend to be by his side easing his mind.  I know that he worries if I'll be okay without him and to be honest I know it'll be hell - he's all I know - and I don't look forward to being alone and without him.  But I will be here and I will be without him and when he's gone I won't be able to see or touch him anymore and he won't be coming back. 

 

I say enjoy your time together...keep each other strong...keep communication open...and he'll know when he's ready to go.

 

 

Amen I just love what you are saying about keeping lines open and assuring him you haven't given up looking at other treatments but he also knows when the time comes you will be with him then too.  I feel the same way.  Praying for you, Gob Bless you

 

Hugs back at'cha!!!  =)