GBM metastasizes to Spine (drop metastasis) anyone experience with it?

kate2kate

Hi,

My husband has a GBM that is currently stable however his symptoms were getting worse very quickly all of a sudden and he started having problems with his leg. Yesterday he had an MRI on his spine and today we found out that he has a tumor in his spinal fluid and cancer cells on his spine.

I know this is rare but does someone have any personal experience?

Thanks,
Katie

kate2kate

Anyone?
Anyone?

Eee1787

kate2kate said:

Anyone?
Anyone?

Katie,
My dad was just
Katie,

My dad was just diagnosed with this drop metastasis today. He's been battling gbm since 12/24/2010. I'm replying to you to (1) acknowledge your pain, and (2) to see if you can provide a timeline of things.

Doctors won't tell us "how long" we have and I'm wondering what your husband's status is.

I'm sorry I can't provide you any answers. I guess we are in the same boat.

kate2kate

Eee1787 said:

Katie,
My dad was just
Katie,

My dad was just diagnosed with this drop metastasis today. He's been battling gbm since 12/24/2010. I'm replying to you to (1) acknowledge your pain, and (2) to see if you can provide a timeline of things.

Doctors won't tell us "how long" we have and I'm wondering what your husband's status is.

I'm sorry I can't provide you any answers. I guess we are in the same boat.

Hi,
My husband was dx in Nov
Hi,

My husband was dx in Nov 2011 with a in-operable GBM IV. He went through the standard course of 6wks radiation and Temodar. Then just Temodar 5/28. After an MRI with a couple spots that could have been radiation necrosis or tumor growth, Avastin was added with the Temodar. Avastin was given every 2 week. He started the Avastin in May 2012 and Had great MRI's up to Sept 2012.

In the begining of Sept Dave had an regular brain MRI which came back clean. About a week later Dave was having trouble with his right leg. And it got worse very quickly and he was losing weight and I could see differences in him daily (which I don't think people believed me until they saw him.) His NO brought him in and did another brain MRI just 2 weeks after the last and it was normal so the next day he did one of the spine and thats when they saw it. Dave had a tumor floating in his spinal cord fluid and it spawns off cancers cells as it floats. He also already had cancer on his spine.

The next day we were back to see our radiologist who immediately start him on 12 radiation treatments to the spine and they took him off of Avastin and Temodar. They are trying a new chemo I just can't remember the name but it starts with an L.

Currently Dave walks with a cane or a walker. by the way he is only 40 years old. But he is holding his own. The radiologist thought he would be a little better than this but is happy he is stable. As far as time we don't get much of answer either but we have been told he won't make it a year. The radiation is for quality of life (hopefully slow the symptoms) and the chemo is to hopefully slow all of it down.

This is extremely rare I have not found much information on it and you are the first person I have chatted with. I am so sorry that you have joined our group but please keep me posted.
Katie

American.Woman

GBM metastacizes
Starting to think my husbanda may have this problem. His legs hurt all the time. The doctors don't seem concerned.

Eee1787

kate2kate said:

Hi,
My husband was dx in Nov
Hi,

My husband was dx in Nov 2011 with a in-operable GBM IV. He went through the standard course of 6wks radiation and Temodar. Then just Temodar 5/28. After an MRI with a couple spots that could have been radiation necrosis or tumor growth, Avastin was added with the Temodar. Avastin was given every 2 week. He started the Avastin in May 2012 and Had great MRI's up to Sept 2012.

In the begining of Sept Dave had an regular brain MRI which came back clean. About a week later Dave was having trouble with his right leg. And it got worse very quickly and he was losing weight and I could see differences in him daily (which I don't think people believed me until they saw him.) His NO brought him in and did another brain MRI just 2 weeks after the last and it was normal so the next day he did one of the spine and thats when they saw it. Dave had a tumor floating in his spinal cord fluid and it spawns off cancers cells as it floats. He also already had cancer on his spine.

The next day we were back to see our radiologist who immediately start him on 12 radiation treatments to the spine and they took him off of Avastin and Temodar. They are trying a new chemo I just can't remember the name but it starts with an L.

Currently Dave walks with a cane or a walker. by the way he is only 40 years old. But he is holding his own. The radiologist thought he would be a little better than this but is happy he is stable. As far as time we don't get much of answer either but we have been told he won't make it a year. The radiation is for quality of life (hopefully slow the symptoms) and the chemo is to hopefully slow all of it down.

This is extremely rare I have not found much information on it and you are the first person I have chatted with. I am so sorry that you have joined our group but please keep me posted.
Katie

Sad news
Katie, I wanted to let you know that my dad lost his battle on 12/2/12. He fought like hell, but couldn't overpower this damn thing. My dad would have done anything to lengthen his life by even an hour. In my dads case, his tumor surrounded every vertebrae in his spine and he was in terrible pain... For too long. I hope your husband is taking care of himself. And that you are hanging in there too. I hope that your husband is here for your years and if so I'd love to meet him. If you share this message board with him and feel like his time on earth is limited, will you ask him to find frank Eppright in heaven and let him know that his family misses him? My dad and my family had such profound hope and the truth is - i think it's a matter of luck. I hope your husband is lucky. Take care and know that no matter what happens, he's doing everything he can, and so are you.

kate2kate

Eee1787 said:

Sad news
Katie, I wanted to let you know that my dad lost his battle on 12/2/12. He fought like hell, but couldn't overpower this damn thing. My dad would have done anything to lengthen his life by even an hour. In my dads case, his tumor surrounded every vertebrae in his spine and he was in terrible pain... For too long. I hope your husband is taking care of himself. And that you are hanging in there too. I hope that your husband is here for your years and if so I'd love to meet him. If you share this message board with him and feel like his time on earth is limited, will you ask him to find frank Eppright in heaven and let him know that his family misses him? My dad and my family had such profound hope and the truth is - i think it's a matter of luck. I hope your husband is lucky. Take care and know that no matter what happens, he's doing everything he can, and so are you.

I am so sorry
Eee1787 - I cried when I read your post. I am so sorry for your loss. I am even more sorry that he was in so much pain. I know there are no words that will make you feel better but my thoughts are with you. I fear that at some point my husband will develop pain as well but so far so good. My husband is declining and for the last 2 weeks he has been very angry, mostly towards me. I am not sure if it's a stage of grief, loosing so much, or the tumor itself. I can take whatever he throws at me. But we have a 9 year old son and it been a really tough year. This week he had to go to his mom's because his blood counts are low and both Sam (son) and I are sick and I did not want him to catch anything. Monday we see the NO to discuss what to do next. Try one more round of chemo or have an MRI now or something else. I just really hope that he makes it for Christmas, he just has too. For his son and his mom. His mom lost her husband on Christmas day.

My husbands time is limited and I will tell Dave to look for Frank. And I have to tell you that one of my dogs name is Frank and you should consider that a big compliment. My dogs are a huge part of my life, they are my family. When I cry at night Frank is right next to me and at least gives me a little comfort.

Please keep in touch I believe you can e-mail me through my name.
Big hugs!
Katie

kate2kate

American.Woman said:

GBM metastacizes
Starting to think my husbanda may have this problem. His legs hurt all the time. The doctors don't seem concerned.

American Woman - If you
American Woman - If you think something is wrong go with your gut feeling. If it has spread to the spine you will see him decline very quickly. My husband went from mowing the lawn to using a walker in three weeks. If you see noticeable changes speak up.