Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

A little confused

Hey guys, I had ss in my head. It invaded my skull spine and neck but didn’t spread. So many doctors told me my chances were slim. I did 37 radiations and 6 rounds of chemo. I stayed in the hospital weeks at a time. I also did my surgery before all this. They couldn’t get about 20% of it because of bone invasion. But it was killed before chemo started with radiation. I’ve been clear since January and my doctor will consider me in remission if I make it till next January clean. My nine months scans are soon and I’m just so lost. My doctor is very surprised with how well things are going but it just seems too good to be true reading almost all other cases. I’m going to Europe for 3 months soon and hopefully that calms me down. My doctor explained that I had such strong treatment and it reacted so well that he thinks there is a chance it will never come back. I try to believe him but… I’m over at UCLA. Ughh

By the way if any of you are on Instagram I’d love to follow your story. My username is Robertbarajas89

Don't waste your time thinking about what you cannot control, like whether the disease may be back or not. You can make better use of your time, like focusing on the positive things in your life. Visiting Europe for 3 months sounds like a great idea. Good luck with your scan and please, enjoy your trip!

Much easier said than done, but I've got to echo what Elodie has said.

Live your life to the fullest, not like it's going to end, but like you've got your entire future ahead of you and want to do great things with it. You may just be fortunate enough to be experiencing the miracle that so many here pray for.

Make no mistake - all things are guided by the hand of God.

Hi Bobby:

I'm so sorry to hear about everything you've been through. My son had ss in his neck at c-5, c-6 and is also at ucla, but right now he's doing proton radiation down in San Diego, where we live. Who is your doctor? Because my son is 23 we asked that he be treated as a Young Adult, so he's seen by Dr. Federman. You're in one of the best hospitals for ss in the country, which is a great start.

I understand the emotional roller coaster you're on very well. It's hard to remain confident, but your mindset is like a thermostat that controls your body. If you're stressed out your body absorbs that, but if you can mentally take control and focus on what you want not what you fear it cues all kinds of good chemicals in your body that can help to improve your health. There's a book called Radical Remission that you might want to read. The author interviewed people who beat the odds against cancer and found the nine things they all had in common––and a lot of them were mental.

I'd love to hear more about your story and introduce you to Drake, if you're interested.

Sending you lots of healing thoughts!


Hang in there BobbyB89! We all get filled with doubt and then the fear sets in. Trust your gut, stay positive and don't let what your doctor knows about SS bring you down. What's wrong with proving your doctor wrong? Why not be that exceptional case that pulls through? Hold onto your faith and family and focus on the positives. I was filled with doubt just recently but I also remembered that if the devil can create such diseases then God created the cures. Look into the book: The pH Miracle Diet by Dr. Robert O. Young and Soursop tea if you're into natural approaches of riding your body of harmful toxins and such.

We're all here to support each other and you have a family that will not forsake you. Have a GREAT time in Europe. I'm SO jealous all that ancient architecture made my hand, 600 year old churches, so my history. Positive thoughts. God bless you always!

All of the above are great comments. Stay positive and love people. Your life is in God's hands and that's the best place to be. Enjoy Europe and eat healthy.

God Bless,

Synovial Mom.


if you do want to visit us (in Germany) just send a message to ■■■■■■■■■■■■■■■■

Élodie.vous avez toujours les mots justes dans vos réponses. Je vous admire.

Synovialmom said:

Tout ce qui précède sont de grands commentaires. Restez gens positifs et de l’amour. Votre vie est entre les mains de Dieu et que c’est le meilleur endroit pour être. Profitez de l’Europe et à manger sainement.

Dieu vous protège,

Synovial maman.

We just take good news and enjoy it for as long as we can. Go to Europe and have a blast. It's nice to forget about cancer and feel normal for a while. I hope three months of fun and exploration will make you less worried and feeling stronger. Best wishes! -- Lori