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Synovial Sarcoma - Online Support Group

Lungs and bones


#1

Is there on here that is getting treatment for SS in your bones and lungs?


#2

Anyone


#3

Sorry, no my daughter currently has it only in her lungs. All the best. Trish


#4

I only have SS in my lungs as well, but if you have questions post them and somebody will help.


#5

Only in my lungs as well. Although my bones hurt often. Why do you ask?


#6

Just looking for other people that have SS in their bones to see what type of treatment they are getting…


#7

My mother has tumor in the leg and metastases in bones and lungs...


#8

What type of treatment is your mother getting?


#9

now we are in trouble, cause water level raised in lungs...

She already have tried:

6 cycles of Ifo-Doxo (2012 jan)
Pazopanibum (2012 dec -2013feb)
High-dose Ifosfamidum (2013 march)
DTIC+Gemcitabine (2013June).
Trabectedin (2013 november)
Dendritic cell-based anticancer vaccination in immunotherapy (2014 april)
Etopozidum oral (2014 april)
Now they are planning detotaxel.

what about you? how do you cope with water in lungs?


#10

Hi, my bf has lyctic lesions on his spine that have not been confirmed as ss. His dr is giving him something that is used to help osteoporosis. It supposedly encapsulates the cancer. I’m sorry I don’t have the name of the drug. His Dr is Dr.Gerald Rosen at NYU Langone. He knows his stuff. Hope that was helpful.


#11

We have sent our stuff to Dr. Rosen so our current doctor told us if we don’t see results we will go there hopefully we can get accepted for a trial drug they have. On the other hand that is extremely far from Oklahoma! Whatever it takes!
I think what is frustrating the most right now to him is that you wouldn’t have a clue that he has cancer by looking at him!!! Or is this how the cancer is?


#12

Yes this is how cancer can be more often than not, a silent killer :-(

jsinder said:

We have sent our stuff to Dr. Rosen so our current doctor told us if we don't see results we will go there hopefully we can get accepted for a trial drug they have. On the other hand that is extremely far from Oklahoma! Whatever it takes!
I think what is frustrating the most right now to him is that you wouldn't have a clue that he has cancer by looking at him!!!! Or is this how the cancer is?