Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group


Hi all,

My husband has a rare cardiac synovial sarcoma and it seems we have exhausted all treatments He is now in hospice and we are here so much sooner than we anticipated. It seemed like he literally went from being fairly normal (albeit fatigued) to basically barely being able to walk to the bathroom and say more than a couple words ....The worst of it is we have a 3 year old son, and we haven't done too much legacy stuff and I'm getting really depressed that we didn't do this last year while he was in a good mental state.

I saw one person say they bought record-able books to have Daddy read them to him later on, but even that wouldn't be possible at this point. I do some video, but it makes me sad because, it's just not anywhere near the father he used to be, and part of me doesn't want him to remember him weak and sick......I don't know what to do--Just in this place much sooner than anticipated and really unprepared :(

I'm so sorry you have to be going through this and that it came on so soon. My situation is similar to yours, I cross my fingers that I will be able to try one more cancer drug before hospice care is needed. But that is far from a certainty. I haven't done much legacy stuff either. One thing I am planning to do is purchase several Christmas and Birthday cards that my 4yr old son can read throughout the years.

I am so sorry....I went through this last month. Fine one day and then totally took him quick. If you want to inbox me private please so and we can talk. Please dont feel alone cause it's a lot to handle. Thinking of you and praying.

I have never been in your position, so I don't feel that I can provide advice. I do like the Birthday card idea or even a Wedding card would be wonderful for your son to open on his wedding day, possibly some day in the future. They seem like little things, but nice for all of you. Thinking of you and your family and praying for all of you.

those are lovely ideas. Perhaps a collage of pictures that he could sign with his expressions for your childs accomplishments too. A letter to him to be opened later would be nice as well.

Sorry to hear that things have deteriated so quickly. Just wondering how you feel about doing some writing and documenting the attributes of your man for your son, maybe mixing it in with any photos or other material you have. Other family members or friends may wish to join the project. My wife has been using jounaling and art as a way or recording and assisting her to get through our cancer journey… Here is an example of one of her works

Goodluck over the next few weeks. Kind regards Gary

Sorry to hear about your husband. As a SS survivor, it truly makes me sad when we lose somone from this disease. I pray for your strength and peace to go through the transition. Blessings to you and your family.

My husband passed last week..................

My heart goes to you and your little one. Give your son a big hug for me. I hope you have a strong support from family and friends in this difficult time.

I am so sorry to hear this. My heart and prayers go out to you and your son. You can email me anytime for I just went thru this last month. I am here for you.



E aroha nui atu ana ki a koutou I tenei wa
My thoughts and deepest sympathy are with you at this time

He toka tu moana, ara he toa rongonui
Your strength is like a rock that stands in raging water.
[Tradition maori proverb that affirms an individuals strength and courage to overcome adversity]

Am so sorry to hear the news. My deepest condolences and sympathies to you and love to your child. This must be a very trying time for you. Kindly mail me on ■■■■■■■■■■■■■■■■■■■■■■■■ in case you would like a more private platform.