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Hi everyone!


#1

Hello my fellow synovial sarcoma friends! I just signed up today on this is my first post on here! Yay! I figured I would introduce myself and give me brief story. I'd first like to start off and say I can't wait to read/hear about all you people! And also, i'm sorry that we have this in common. Not really ideal, but hey! We're all strong enough to get through it :)

So my names Julie! I'm from New Jersey. I got diagnosed with stage 4 synovial sarcoma on March 25, 2014. Almost a year! I started chemo in April. I was on adriamycin and ifex monday-thursday and then 2 weeks off. I finished chemo in August. I got surgery October 7th to remove the tumor in my chest and then had proton radiation from dec 1-jan 20. I get my first scan next month, and if everything is cleared, i should be in remission! hopefully!

I would love to help anyone out with questions, advice, anything at all and vice versa. I look forward to hearing from you guys!

Keep on fightin!!! :D


#2

Welcome Julie! I am also from New Jersey but I went to New York for treatments.

How is your breathing after all the treatments you went through?

Good luck with the coming scan!


#3

Welcome Julie! I’m aure everything will be okay with your scan.

I’m also curious about your breathing, you don’t have any kind of problem with it?


#4

Thanks so much Elodie! Did you go to Sloan Kettering? How are they if so? And before I was diagnosed, I had difficulty breathing a lot. So bad where I could barely get a breath in. During chemo, the doctors just knew that it was working because my pain was slowly fading. Now that I am completely done with everything, my breathing is almost back to "normal." I do get some slight pain when I breathe, but I feel like it's from my insides still trying to heal from surgery and also the radiation. Also, during surgery, the surgeon had to remove a phrenic nerve and subclavian vein because the cancer got to them. He also said my diaphragm has barely any function anymore so I have to work extra hard to breathe, but I don't notice it too much cause i'm young and healthy (other than having cancer, of course) haha

Elodie Espesset said:

Welcome Julie! I am also from New Jersey but I went to New York for treatments.

How is your breathing after all the treatments you went through?

Good luck with the coming scan!


#5

Hey Alejandra! So before I was diagnosed, I had a lot of trouble breathing. That's how I found out, I could barely get a full breath in. Now that I am complete with all my treatments, my breathing is basically back to normal. I do have a slight pain sometimes in my chest, but I think it's just from my body still trying to heal from the surgery and radiation still.

Alejandra Camacho said:

Welcome Julie! I'm aure everything will be okay with your scan.

I'm also curious about your breathing, you don't have any kind of problem with it?

#6

Julie, I did not go to Sloan Kettering (my insurance was not covering it at the time). For the biopsy, I went to Newark then got a second opinion from Gerald Rosen and stayed with him. He used to work at St Vincent Comprehensive Cancer Center. He is now at NYU. Great oncologist, very experienced...


#7

Hello Julie, welcome to the synovial sarcoma group. Happy to hear you had a good response to chemo and proton beam therapy. I will give you my piece of advise for what it is worth.
Keep a positive attitude. Exercise regularly, eat lots of vegetables. No dairy products.
Keep the body alkaline, yoga daily. Above all most importantly sincerely pray to god.
One question to you, how did you get the proton beam therapy, which hospital and possibly is there is s number/ name I can contact.
You keep it up and keep fighting,
Enjoy every day, don’t think about the past, don’t think about the future just enjoy the present. And you will do good, I will keep you in my prayers Julie, God bless.


#8

Thanks so much! And I could not agree more! And I received proton therapy at Robert's Proton Center at University of Pennsylvania. My doctor's name is Charles Simone. I would recommend any doctor there to anyone. Most incredible facility, I am so lucky to have them as my team. You can google him "Charles Simone UPenn" and find out ALL of his information there, including the phone number! Are you considering proton therapy?

Jude said:

Hello Julie, welcome to the synovial sarcoma group. Happy to hear you had a good response to chemo and proton beam therapy. I will give you my piece of advise for what it is worth.
Keep a positive attitude. Exercise regularly, eat lots of vegetables. No dairy products.
Keep the body alkaline, yoga daily. Above all most importantly sincerely pray to god.
One question to you, how did you get the proton beam therapy, which hospital and possibly is there is s number/ name I can contact.
You keep it up and keep fighting,
Enjoy every day, don't think about the past, don't think about the future just enjoy the present. And you will do good, I will keep you in my prayers Julie, God bless.

#9

Hello and welcome! I see you are getting to know the great folks on this site. Glad to hear that all is going well and that you are responding to treatments. I'm sure your check in next month will be fine. I've learned to squash that anxiety over the years -- but it creeps back every once in awhile. When it does I like to celebrate after the appointment with my wife and family. I’ve been battling this for 24years – Always been extremely lucky and aggressive.

Jim


#10

Hi Julie

Sending positive energy your way for the good news to come. Do you mind commenting on how you tolerated chemo? My husband had a very bad reaction first timr out. He just had a second surgery to address local recurrence and upon recovery will try chemo again. I am trying to get him ready mentally for this phase. I would appreciate your good thoughts on how to get through chemo. For him at least, it is the hardest part
Kind regards


#11

Hello and welcome to the group.I am also from New Jersey.I was diagnosed in 1995.A synovial sarcoma in the head and neck.There was only 3 places that had proton radiation at the time and they were to far for me as I had small children and a single parent.I wish they had Proton here in 1995. Keep up the positive attitude.Eat well, Pray,and exercise. Never give up.


#12

Hey, I forgot to say hello!

Welcome Julie, I hope you find the support you need and an opportunity to help others.

Peace be with you, Keep smiling.

P