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Synovial Sarcoma - Online Support Group

Hey guys updates on my situation


#1

I posted a while ago during treatment. I just finished my 5 rounds of chemo on the 12th of December, and earlier in the year I did an 8 hour surgery to remove a 7.5 cm tumor from my neck/head. it got into the skull and neck bone a bit and was pressed against my spine. I also did 37 treatments of radiation during the summer. So far it has not spread and my scans were clear before i started my second round of chemo. My first scan after treatment is in a couple of weeks. I have had my ups and downs and am pretty confused about it all at the moment, Ive been happy for the most part but have gone a little crazy here and there. I am 24 years old and was diagnosed when i was 23. i am currently with UCLA oncology in Los Angeles. I havent been in school or worked much since before i found out about the tumor, in 2012. I have taken up meditation and bikram yoga. I am on a strict diet of superfoods, all I eat it acai, maca, spirulina, maquee, mushrooms, cbds from thc, organic carrot juice, chia seeds, flax seed, black seed, walnuts, kale, spinach, apricot kernals, high ph water, oatmeal, aloe vera and tons of other similar health foods. i have 6-10 smoothies a day AND EVERYTHING is blended. Coconut oil usually makes the smoothies taste good. i have also been working on music to put on the net soon. I was already writing music before cancer, but caner has definitely inspired me more to be me and be proud, its awesome because it really shows in my songs. my parents are struggling but i try to toughen them up. I really dont know whats going to happen but ive taught my self to genuinely be okay with whatever the future brings. I'm just going to focus on the present because thats all i really have control over. I started a superfood diet and 100 day bikram yoga challenge to help me with the struggle and it has done wonders. The first picture is from Jan 2 2014 and the second is Jan 15 2014, i am posting pics every two weeks for my family and friends.

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#2

Jan 2 2014 not 2013


#3

Nice to hear you are keeping your spirit up through this nightmare. I can't wait to hear your music :-)


#4

Hi Bobby,keep the spirits high ,

My story is very similar apart from my chemo was cancelled after 2 cycles,my tumor also in my neck was 10.5 cms but all`s good so far and just about to go for my 3rd scan...

all best

Robert


#5

Wishing you the best of luck and thanks for sharing, you are an inspiration for sure to many others.


#6

Hello - glad to hear that your spirits are up! Staying busy and finding time to bring joy to your life is important. I was diagnosed in Oct 2012 in my left lung and had a lobectomy. I had a 7 cm tumor removed and had my lower left lung removed as well. I had 6 rounds of adria and ifex and 30 rounds of radiation. I'm now undergoing chemo again with high dose ifex and will complete my 4th and final next week. So far my scan showed three tumors are gone and three are 50% smaller. All three are less than a cm in size so God is good! Never stop being positive and optimistic. I'm apart of other groups on FB like Sarcoma Alliance and SS Group and there are many survivors that have been clear for 15 or more years. It can happen and will happen for you too! Stay strong and keep us posted. continue taking care of yourself!