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Synovial Sarcoma - Online Support Group

Mets attached to the heart


#1

Hi All,

I wrote a while ago about Dan being in the hospital with a pericardial effusion. That hospitalization went ok. They did a couple of procedures and the biopsy and fluid were all negative for synovial sarcoma.
Unfortunately about 6 weeks later, right before he was to have a CT scan of his heart to make sure everything was ok…Dan had sharp pain in his side and was hospitalized with fluid around his heart again. (We were waiting for “the dust to settle”)

The surgeons found a large “mass” behind his heart and did an open chest surgery to get it out, unfortunately when they went in they realized the tumor was in the pericardium and fused to his heart. Stupid, stupid cancer. It would be too risky to remove it. They cleared some other nodules and sucked out a lot of the fluid and closed him up.

Now we wait for him to heal from surgery and he’ll begin Votrient with the hopes that it will shrink or at least stop the progression of the tumor. We’re waiting MRI results to see if there are any more.

Just wanted to send this update to let you all know. Would love to hear any experiences you’ve had on V. I’ve read that many of you or your loved ones have tried. We’ve had such good luck with surgeries, it kills me that this one isn’t removable. It also kills me that Dan is perfectly healthy otherwise.

Katie


#2

My dear Katie. I think about you, Dan and the children so very often. James was on Votrient for about 6 months. It turned his hair white, his skin was very pale and very sensative to light as well. He had some luck in the beginning with halting the demon but after about six months, it stoppe working. Remember, there is hope on the horizon. Never give up. My prayers are with you.


#3

Hi Katie,

Please start as soon as possible!

http://www.youtube.com/watch?v=B4xejnsLwKE

I wil share my expierience if you would like.


#4

I'd start as soon as possible as well. I've been on 800mgs for about 6 months and 600mgs for about the last 8 months. All is clear. I had my first surgery in 92. I do not know why I've surrived so long - my family says its because I'm just too stubborn. Dan - continue to fight!

Jim


#5

Hi Katie, My thoughts and prayers are going up for you all. Hope the Votrient works, it did for my daughter, but inflammation from an abscess in her pelvic area turned to gas gangrene. She was a tough fighter and I'm sure Dan is too. Best of luck! Lynda


#6

Thanks Everyone,

Dan has been on Votrient for the past 5 weeks. It's going well. His hair is starting to get white and his blood pressure is a little elevated. He has some nausea in the morning after taking the pills but it goes away when he eats 1 hour later. There has been no more fluid collecting around his heart or in his lungs and he is doing much better than he was when he started so everyone is hopeful. They aren't going to scan him until the end of November (unless he has symptoms that need to be checked out) He has an echocardiogram scheduled for early November to make sure his heart is still doing ok despite the pressure from the tumor.

We're just so thankful that he's doing better. This summer was really scary. The kids love having him home from work so that's a nice bonus!

Thoughts & Prayers to all of you.

Katie


#7

Thanks for the update Katie. I hope votrient keeps working.


#8

Hey Katie

How is dan doing now ?

My sister has almost the same case, she has had a recurrence adjacent to pericardium area of her heart. The doctor was able to suck out 95% of the mass but we are still scared it can re-grow again. as we all the know the speed of SS is pretty fast. Now what we are confused is get her on chemo session of try going for a cynical trial.

How did the Votrient chemo worked on dan ? for the long term....

Thanks:) hope dan is in great health!

Katie T said:

Thanks Everyone,

Dan has been on Votrient for the past 5 weeks. It's going well. His hair is starting to get white and his blood pressure is a little elevated. He has some nausea in the morning after taking the pills but it goes away when he eats 1 hour later. There has been no more fluid collecting around his heart or in his lungs and he is doing much better than he was when he started so everyone is hopeful. They aren't going to scan him until the end of November (unless he has symptoms that need to be checked out) He has an echocardiogram scheduled for early November to make sure his heart is still doing ok despite the pressure from the tumor.

We're just so thankful that he's doing better. This summer was really scary. The kids love having him home from work so that's a nice bonus!

Thoughts & Prayers to all of you.

Katie


#9

Dan passed away:

http://www.synovialsarcomasurvivors.org/forum/topics/sad-news?xg_source=activity

rk said:

Hey Katie

How is dan doing now ?

My sister has almost the same case, she has had a recurrence adjacent to pericardium area of her heart. The doctor was able to suck out 95% of the mass but we are still scared it can re-grow again. as we all the know the speed of SS is pretty fast. Now what we are confused is get her on chemo session of try going for a cynical trial.

How did the Votrient chemo worked on dan ? for the long term....

Thanks:) hope dan is in great health!

Katie T said:

Thanks Everyone,

Dan has been on Votrient for the past 5 weeks. It's going well. His hair is starting to get white and his blood pressure is a little elevated. He has some nausea in the morning after taking the pills but it goes away when he eats 1 hour later. There has been no more fluid collecting around his heart or in his lungs and he is doing much better than he was when he started so everyone is hopeful. They aren't going to scan him until the end of November (unless he has symptoms that need to be checked out) He has an echocardiogram scheduled for early November to make sure his heart is still doing ok despite the pressure from the tumor.

We're just so thankful that he's doing better. This summer was really scary. The kids love having him home from work so that's a nice bonus!

Thoughts & Prayers to all of you.

Katie