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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: Nov 8 5:59pm | Replies (840)
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@sonnyfigueroa

Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have been recently diagnosed with UPS, undifferentiated pleomorphic sarcoma. I had surgery to remove a tumor the size of 5.2 cm in my right upper thigh area. I am scheduled to have a pet scan and an mri next week so they can determine the next course of action, surgery or radiation.
This is all scary for me and my family. I have a wife and 3 girls 12 and under.
Any kind of guidance or inspirational talk would be great! Thank you

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Replies to "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..."
sonshine161 | @sonshine161 | Mar 19, 2023

Try and get a 2nd opinion at a major cancer center such as MDAnderson, Mayo Clinic or Sloan Kettering. They see and treat so many more people with what you’ve got and their surgeons are more experienced. Good luck

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rlucianojr | @rlucianojr | Mar 24, 2023

Hi Sonny.

My name is Ralph and my dad has UPS. He is much older than you and was diagnosed in May of 2020 … but the one thing I can tell you is that you must remain positive and educate yourself on what’s out there.

Dad has been through radiation, immunotherapy and chemotherapy, with some surgeries in between. Currently, he is starting in a trial for a drug, Rogaratinib … It is an inhibitor for a protein (FGFR) that is the driver behind dad’s cancer.

The doctors are cautiously optimistic that he will have a good response from the drug… there are very few patients with UPS that are able to participate in the trial.

I hope by sharing his journey it will, hopefully, help you and others in some way.

Stay strong !!

Will keep in touch.

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Terriebikes | @bicycle3 | Mar 24, 2023

I have had surgery and two rounds of radiation and two rounds of chemo.
Going without treatments now for a while to see if there are changes. At least I can embrace some spring sunshine.
I have good care but wish the doctors were more of a team.
I am 75 with two grand children so at a different stage. Try to keep some step in your life and relationship open ness.
Blessings.

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cc44 | @cc44 | May 6, 2023

Hi Sonny,

I experienced the same diagnosis in 2019. Stage 3 UPS almost 10 cm. It was surgically removed and I went through chemo and radiation treatments. A small recurrence in 2021, clear since.
Seek out the best doctors and hospital you can. I went to UCSF. Follow their advice, be your own advocate - seek out information, get 2nd opinions, keep yourself busy, and enjoy each day.
Blessings to you!

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