Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

I want to help

As many of you may remember or have read, my husband passed away on January 14, 2013 after a long and heroic battle with Synovial Sarcoma. It has taken me months to recover from the loss and I don't know that I will ever be fully healed. But, I know without the kind words and advice from others, I would not be where I am today. So, I would like to offer that to others. Anyone that has any questions about treatment, living with the disease, grief, loss...I'm open to anything.

you are so inspirational carrie. thanks so much for your wonderful offer.

You might want to check out
They help to connect people who have shared similar experiences. It might be a way for you to help another family dealing with Sarcoma.

I'm friends with Johnny Imerman. Great guy, great org.

You are absolutely amazing for coming on here and offering your support to everyone on here, i cant begin to imagine what your grief was like after the loss of your husband, my husband is still fighting this horrific disease he was given weeks, maybe months on the 9th September 2013 and he is still going strong, still today i hope for a miracle because i cant begin to comprehend what my life will be like without him in it. So my hands go up to you for this status you have posted xx

Thank you for reaching out! I have synovial sarcoma of my right foot that was dx just in Aug. 2013. By Sept they found diffuse mets in my lungs including a 10 cm tumor there as well. I have severe emphysema and some cardiac disease. I am 61. I am interested in knowing if your husband took the ifosfamide rx? If so, what were the benefits and/or negative points about it. In my case, it appears we are talking mainly palliative even at this point... it is a hard decision to make. I hope to remain as well as I am for as long as I can. My other weakened body systems will most probably be affected by the chemo. I am looking for some straight answers about it from someone who is now able to look back. I appreciate any input.... good or bad as long as its honest! Thanks again. Debbie.

Hi Carrie,

That is so kind of you, to offer your support to us all after your loss. You are a very brave woman.

Thank you.

Best wishes Karen x

I know what you are going thru. You are probably much further down the road to recovery, or at least moving forward, than I am. I lost my daughter at 16 this past August. She fought bravely for 6 years. I still can't believe she's gone. She had such a bright future ahead of her, but this disease took it all away from her. It's hard to figure out how to go on with life when such a big part of you is missing, but life goes on whether we are ready for it or not. I can only hope that someday I will see her again and it will all make sense. Right now, I'm just left here wondering why it all had to happen. I go on because I have to take care of her mom and little brother. I promised her I would as she was passing away. I think that in some way, being here and supporting others affected by this disease that I had never heard of before helps to give our loss some meaning.


Thank you for sharing Dave. I think you're right, by helping others you are passing on Kayleigh's legacy. It's incredibly kind of you.

When I read your story. I cried for days and I am crying right now. I lost Evan my husband on July 4th, 2013. I was hoping that we could be friends and give each other strength because I am having a very hard time grieving as I am sure you are. I am so sorry for your loss. They were both our heros and I miss my husband every second of everyday. I do not feel that I will ever fully heal either. I really hope you are doing okay. What has helped you grieve?

A memorial forum has been added to the website. Would you consider posting something there?