My struggle with synovial sarcoma!

General Blog
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LAST YEAR I HAD LOST 25 LBS AND WAS IN A LOT OF PAIN ON MY LEFT SIDE JUST UNDER MY BREAST BONE ! I WENT IN TO THE ER AT BRYAN AND THEY DID A CHEST EX-RAY AND FOUND A MASS IN THE CENTER OF MY CHEST IT WAS HUGE , 20x 20 IN CENTIMETER'S ! I SAW DR. RAINS AND HE PROCEEDED TO TAKE THIS TUMOR OUT AND DID AN EXCELLENT JOB ! I WENT AHEAD AND DID CHEMO FOR 6 MONTH'S ! I PUT ON SOME WEIGHT WAS FEELING GREAT ! AND THEN 6 MONTH'S JUST FROM THE LAST DOSE OF CHEMO THIS RARE CANCER HAD DECIDE TO STRIKE AGAIN ! I WAS PRETTY DEVASTATED ! THEY DID PET SCAN AND TOLD ME THAT I HAD MULTIPLE TUMOR'S AROUND MY LUNG'S ESPECIALLY THE LEFT ONE AND IN THE AN SOME IN THE CHEST AGAIN AND BY THE TUBES THAT GO DOWN EACH SIDE OF YOUR LUNG SO IM GOING THROUGH CHEMO AGAIN THIS TIME JUST IFEX WITH THE STRONGEST DOSE THAT MY BODY CAN HANDLE ! I HAVE BEEN THROUGH 2 DOSE'S ALREADY AND IT'S KICKING MY ASS ! I WENT IN TODAY AND HAD BLOOD WORK DONE AND EVERYTHING WAS SO LOW THAT I HAVE TO GO BACK IN FOR A BLOOD FUSION THIS WEEKEND ! IM ONLY 36 AND NEVER THOUGHT THAT I WOULD GET CANCER AT THIS AGE ! ESPECIALLY A RARE ONE ! THERE ARE ONLY 800 CASES A YEAR THAT EFFECT THE CHEST AND LUNGS LIKE ME ! WHEN IM DONE WITH CHEMO I REALLY DON'T KNOW WHAT TO EXPECT ? OR WHAT OTHER TREATMENT OPTION'S DO THEY HAVE OUT THERE ? IM WILLING TO TRY AND SEE A SPECIALISTS IN " SPINDLE CELL SARCOMA " ! OR " SYNOVIAL SARCOMA " IM SCARED OUT OF MY MIND OF THE UNKNOWN SO , IF ANYONE KNOW'S A MORE ABOUT THIS RARE CANCER AND IF THERE IS ANOTHER CHEMO DRUG OR CLINICAL TRIALS GOING ON IM INTERESTED ! GOD BLESS YOU ALL THAT HAVE BEEN BATTLING SOME KIND OF CANCER OR DISEASE ! MY MOM HAS A PRAYER CHAIN FOR ME ON HER FACE BOOK IF YOU WOULD LIKE TO JOIN !

TIMOTHY PARKER

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Ifosfamide is a good chemo to start with. What's the dose and how many days are you getting it?

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God bless you. I was dx last week with stage 4 synovial sarcoma that started with a tumor in my foot that has metastasized to my lungs. I will friend you if its OK with you? Debbie.

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I would like to join your mothers prayer group if its ok?

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my daughter is 20 and was diagnosed with a rare synovial sarcoma in her left lung in june. she tried chemo treatments and it didn't help. they also tried to remove her left lung but they found in the operating room it was in the muscle of her diaphragm so they closed her up. I am so sorry you are going through this terrible nightmare and if you ever heard of any great treatment or specialist could you please let me know. we are in Virginia and we don't have anything great here. I hope you are feeling ok and sending prayers your way

natalie