Quantcast

Synovial Sarcoma - Online Support Group

Hello my fellow fighters


#1

Hey guys!!

Phew, I haven't logged on here in a while! Lately, I have been having "one of those days" where I kind of just think about life and all that I have endured. I am sure I am not the ONLY one haha. I was curious if any of you guys have had SS stage 4 of the chest wall. I would like to talk to someone I can relate to. I had a friend I met that had and he was the only one I knew that had my similar case but unfortunately he is in heaven now. Just want to meet some wonderful people to connect with.

And to the rest of you, keep on fighting. We are incredible people and I'm proud of all you fighters. Hope you're proud of yourselves too!

Fight on! :)

- Julie


#2

Nice to hear from you Julie! Your tumor cells haven't picked the most common location for their settlement, but I know there are other members with this location so I hope they will contact you... Keep strong!


#3

Hi Julie,
I have Stage 4 of the pluera of my right lung. It has been 13 mths since my diagnosis. I had a grapefruit size tumor removed from my chest last June. Radiation of the area for 6 wks last sept. In November found out a new tumor was present. Had 2 rounds of chemo Doxie and ifex and found out the tumor grew 20% and chemo was stopped at this point. My local radiologist found me dr. Charles Simone at UPenn in Philadelphia. I had 33 treatments of proton therapy a very direct form of radiation. I just had my ct scan 2 wks ago and no new growth of the large tumor a 3 other tumors that weren’t treated 1 has disappeared and the other 2 have shrunk.

I can’t tell you how relived I was after having it grown so aggressively for so long. Pet scan is in August so we’ll see what happens then. Each day I thank the universe for giving me another day and helping me to rebuild by strength. Some days it is hard to believe this has happen to me. However it has made me appreciate things I took for granted. If there is any way I can help just reach out

Missy


#4


Missy!

Thanks so much for reaching out to me! Small, small world; My radiation oncologist is Dr. Simone at UPenn as well!! Wow, we have a lot in common already. (sadly, but thats okay) You seem to be doing well. So I was diagnosed March 2014 and had a 15-20cm wide tumor in my chest compressed against my left lung. Arthur Staddon of UPenn was my oncologist and had to do 6 3-week cycles of chemo at first, because the tumor was too large to operate on. Afterwards in October, Sunil Singhal performed surgery on me to remove the tumor. Then in December, I started proton therapy with Simone. 36 rounds. I was all clear and then a little spot on my right lung appeared but it was super small so they removed it two weeks ago. I am back to being in remission so I have technically been in remission since March of this year. I am all better, but I don't know if you're anything like me where I still think about everything I went through and I just want to know if there are people out there who have my similar case. (Since i'm sure your doctors have mentioned how rare it is to get it in the chest, let alone at all!) haha. How did you like Charles Simone? Did you go to UPenn initially for treatment? I am assuming you are close if you went there, but it's so convenient to have such incredible doctors in the area. I am from New Jersey but only like 30-40 minutes from UPenn. How old are you if you don't mind me asking by the way? I am so glad you reached out to me. And I am SO SO happy to hear you are doing better. I couldn't agree more with your last paragraph. To look back and think, wow I went through all that? It's crazy and life is too short to be anything but happy! :) Look forward to hearing from you!

- Julie


Taz said:

Hi Julie,
I have Stage 4 of the pluera of my right lung. It has been 13 mths since my diagnosis. I had a grapefruit size tumor removed from my chest last June. Radiation of the area for 6 wks last sept. In November found out a new tumor was present. Had 2 rounds of chemo Doxie and ifex and found out the tumor grew 20% and chemo was stopped at this point. My local radiologist found me dr. Charles Simone at UPenn in Philadelphia. I had 33 treatments of proton therapy a very direct form of radiation. I just had my ct scan 2 wks ago and no new growth of the large tumor a 3 other tumors that weren't treated 1 has disappeared and the other 2 have shrunk.

I can't tell you how relived I was after having it grown so aggressively for so long. Pet scan is in August so we'll see what happens then. Each day I thank the universe for giving me another day and helping me to rebuild by strength. Some days it is hard to believe this has happen to me. However it has made me appreciate things I took for granted. If there is any way I can help just reach out

Missy

#5

JulieK4,

Just saw your post. I had stage 3/grade 3 synovial scarcoma of the abdomen removed Oct 15, 2014. It was necessary to remove walls and muscles, resection the colon ..... Because my margins were clear, I had no follow up chemo or radiation. I must wear a binder at all times.

The results have been great so far. I have developed a hernia that will need to be attended to in the future, but I am in no hurry for that.

I live with the fear of a re-occurence and break out in hives a few days before my 4 month scans. My next scan is in three weeks and I am suspicious that there may be problems at the original sight as well as the lung. Hopefully it's all in my head.

What keeps me going is a positive attitude and lots of activity. I refuse to let this terrorist define me. I would love to communicate with you as I would think the chest well/abdominal wall would be similar.

Keep up your fight. We will survive this and live to cause trouble for many more years.