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Synovial Sarcoma metastasis to lungs and lymph nodes?!


#1

I have stage IV Synovial Sarcoma that started as a tumor in my groin. I've done 6 rounds of continuous chemo where I took home a couple bags of ifos and doxo each round. I've also done 25 radiation treatments. All of this shrunk my tumor from 6 cm to 3.3cm. Amazing right? I had surgery for the rest. They noticed in surgery that the cancer had already begun to spread throughout my lymph nodes and right before Christmas I was told I had several tumors in my lungs.

Has anybody ever had metastasis to their lymph nodes?? And if so, did treatment take care of it?

And I've also been told even if you do chemo and radiation for mets in the lungs they come back. Is this true?


#2

It’s is true I have heard only way to get rid of lung mets is surgery. Look at a previous post about a week ago but I just had 54 lung mets removed.


#3

Wow 54.. I have no idea how many I have just yet. I told them in the hospital I felt chest pain and they didn't show up on chest CTs. But when I finally got my PET scan they showed. So surgery is possible? Probably depending on their location..

MissMya said:

It's is true I have heard only way to get rid of lung mets is surgery. Look at a previous post about a week ago but I just had 54 lung mets removed.

#4

Chemo for life? Isn't that really harmful to his system after prolonged usage? I mean that's just what I've heard. I've only been through chemo a little over a year and it started messing with my heart. His aren't operable?

Townclerk said:

my husband's have gone to his lungs. He is on chemo for life. He is on a trial drug and as long as it keeps working, he stays on it. When it doesn't they hopefully have something new to offer.


#5

I have been dealing with this since 1992. Mine jumped systems to the lymph nodes as well. I've has 3 lung surgeries and still it came back. The current growth area is not an option for surgery. I've been on Votrient since May 30th 2012. The tumors/lymph nodes shrank to the point where it is no longer an issue. I still go for scans every 2 to 3 months. You may want to give it a try.


#6

Simplycandace, not all chemos are the same. Some are more toxic than others, have a lifetime limit, and can be only taken for so many cycles (for example doxorubicin). Others can be taken for life (for example targeted therapies such as gleevec).

Siimplycandace said:

Chemo for life? Isn't that really harmful to his system after prolonged usage? I mean that's just what I've heard. I've only been through chemo a little over a year and it started messing with my heart. His aren't operable?

Townclerk said:

my husband's have gone to his lungs. He is on chemo for life. He is on a trial drug and as long as it keeps working, he stays on it. When it doesn't they hopefully have something new to offer.


#7

Elodie, Is gleevec used for synovial sarcona?

Elodie Espesset said:

Simplycandace, not all chemos are the same. Some are more toxic than others, have a lifetime limit, and can be only taken for so many cycles (for example doxorubicin). Others can be taken for life (for example targeted therapies such as gleevec).

Siimplycandace said:

Chemo for life? Isn't that really harmful to his system after prolonged usage? I mean that's just what I've heard. I've only been through chemo a little over a year and it started messing with my heart. His aren't operable?

Townclerk said:

my husband's have gone to his lungs. He is on chemo for life. He is on a trial drug and as long as it keeps working, he stays on it. When it doesn't they hopefully have something new to offer.


#8

Usually gleevec is not used for synovial sarcoma although I think imaFighter91 has tried it in the past. There's been a clinical trial for synovial sarcoma using a combination of gleevec and everolimus but the results aren't out yet and they are not recruiting anymore:

http://clinicaltrials.gov/show/NCT01281865

I do know somebody who was on this trial for over a year although eventually it stopped working.

glori said:

Elodie, Is gleevec used for synovial sarcona?

Elodie Espesset said:

Simplycandace, not all chemos are the same. Some are more toxic than others, have a lifetime limit, and can be only taken for so many cycles (for example doxorubicin). Others can be taken for life (for example targeted therapies such as gleevec).

Siimplycandace said:

Chemo for life? Isn't that really harmful to his system after prolonged usage? I mean that's just what I've heard. I've only been through chemo a little over a year and it started messing with my heart. His aren't operable?

Townclerk said:

my husband's have gone to his lungs. He is on chemo for life. He is on a trial drug and as long as it keeps working, he stays on it. When it doesn't they hopefully have something new to offer.


#9

Thank you very much for more information, Elodie! I was trying to search, however I was not so successful.