Synovial Sarcoma - Online Support Group

My brother lost his fight


Hi All,

My younger brother, ssarm here, lost his fight with SS.
More than five years after his tumour was first detected and resected in his hand, and more than 2.5 years after lung metastasis.

He tried AIM, high dose Ifosofomide, Ayurvedic treatments, which we believe gave him extension and good quality of life, relatively, Votrient from April '16 to Sep '16, which gave excellent response initially, before stopping working.

He deteriorated rapidly in the last two months and resorted to Yondelis in Feb '17. In the very next week, he experienced fever and SOB, and was in Hospital , conscious and talked until the afternoon of 28th Feb, and breathed his last on 1st March 2017, just after 4 PM.

I could not believe it for a day, but now i know he fought bravely, with great fortitude, refused to give up until the last moment.

My family is devastated, and yet to come to terms with the loss.
Don’t know what else to say, but yes, keep fighting.



Hi Laxman,

You and your family are in our thoughts. From all of us at Ben’s Friends, we are so very sorry for your loss. Please don’t be a stranger, we are still here for you.

Meli, Seenie and TJ at Mod Support


Thank you for sharing. I know some patients benefit from Yondelis but it’s not the first time I hear about patients rapidly deteriorating after taking Yondelis. Although it could be the natural progression of the disease (going exponential) I have the feeling there is more to it. I wish there was more research done to try to understand what makes the drug work in some cases but be detrimental in others.
Your brother gave his best but he was not lucky. May his courage give you strength…


My thoughts and prayers will be with you and your family.


So sorry for your loss. My daughter’s illness has followed a similar course and she is now receiving Hospice services. They have been terrific, as have friends and family. I hope you have good support and derive comfort from sharing good memories of your brother


Has anyone here had any positive stories with this terrible disease?
I just lost my wife, at age 33!
Leaving behind 4 year old, and 8 month old daughters!!!
Hers started on her spine, on a nerve root ending.
They took that out, followed by 6 weeks of chemo, and 33 rounds of radiation…
Then it came back inside her spinal cord.
They opened her up again, after she became paralyzed from the waste down.
Then it came back again!!!
Now 4 tumours in her spine and 2 in her brain!
They gave her 10 rounds of full brain and spinal radiation and said there was nothing more they could do. She lived 4 months after that diagnosis!!
Will this horrible cancer ever be stopped?


Sorry to hear about your experience donniokie.
I hope you will find solace in her cherished memories.

SS is very aggressive. It grew from zero to 8 cm in 8 months in my brother’s case.

I hope the research identifies a cause and find a cure to this horrible and terrible malady and other cancers.