1. < Sarcoma
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Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Interested in more discussions like this? Go to the Sarcoma Support Group.

sonshine161 | @sonshine161 | Mar 19, 2023
In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)
@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

Jump to this post

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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stin26 | @stin26 | Mar 20, 2023
In reply to @skullbasecancer4 "Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1..." + (show)
@skullbasecancer4

Chondrosacroma skull based. Just had second surgery for removal . First time it was level 1 and second Level 2 . Anyone have this?

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Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago and I'm starting to see that this is pretty rare. No surgery yet but I know it's coming. I hope you're doing ok and, if you're up for it, I'd like to ask you a few questions about your experience. No pressure though, I know it can be taxing answering questions.

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1 reply
skullbasecancer4 | @skullbasecancer4 | Mar 23, 2023
In reply to @stin26 "Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago..." + (show)
@stin26

Hi, I have chondrosarcoma of the skull base also. It was just discovered 6 months ago and I'm starting to see that this is pretty rare. No surgery yet but I know it's coming. I hope you're doing ok and, if you're up for it, I'd like to ask you a few questions about your experience. No pressure though, I know it can be taxing answering questions.

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My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .

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3 replies
skullbasecancer4 | @skullbasecancer4 | Mar 23, 2023
In reply to @skullbasecancer4 "My husband had the same type of tumor removed 27 years and was in great health...." + (show)
@skullbasecancer4

My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .

Jump to this post

Please ask. I will do my best.

REPLY
rlucianojr | @rlucianojr | Mar 24, 2023
In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)
@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

Jump to this post

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
In reply to @skullbasecancer4 "My husband had the same type of tumor removed 27 years and was in great health...." + (show)
@skullbasecancer4

My husband had the same type of tumor removed 27 years and was in great health. Also had radiation. The tumor reoccured 27 years later . Last time it was a one this time 2/3 , which is
not great news for him
. But for the last 27 years he was in great health . Do you have any symptoms? He was operated on at
Jackson Memorial
Hospital twice now with an amazing team of doctors , if you need any help . They saved his life twice .

Jump to this post

I am being saved multiple times also.
Best wishes

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1 reply
Terriebikes | @bicycle3 | Mar 24, 2023
In reply to @sonnyfigueroa "Hi! My name is Sonny and I am a 49m living in Northern Nevada. I have..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
Terriebikes | @bicycle3 | Mar 24, 2023
In reply to @bicycle3 "I have had surgery and two rounds of radiation and two rounds of chemo. Going without..." + (show)
@bicycle3

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.

Jump to this post

Hard part for me is lack of appetite and loss of taste and fatigue overtakes my days.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023
In reply to @phuds01 "Hello, my name is Lisa. My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed..." + (show)
@phuds01

Hello, my name is Lisa.
My sweet daughter-in-law (Karla 27 yrs old) has just been diagnosed with synovial sarcoma. She is in the process of getting an appointment scheduled with MDAnderson Houston.

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@phuds01, I'm tagging @winter23 @tynerlisa, who have a child with synovial sarcoma and @ellengrubb who herself has synovial sarcoma. You may also be interested in these discussions:
- Synovial sarcoma: Proton or conventional radiation after surgery? https://connect.mayoclinic.org/discussion/radiation-following-surgery-proton-vs-conventional-treatment/
- Synovial sarcoma: what treatments might I expect? https://connect.mayoclinic.org/discussion/synovial-surcoma/

Phuds, has she had her appointment at MD Anderson yet? What is the treatment plan?

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023
In reply to @amydunn "Is there anyone who can give me information about the chemotherapy treatment involving Cyclophosphamide and the..." + (show)
@amydunn

Is there anyone who can give me information about the chemotherapy treatment involving Cyclophosphamide and the first few weeks of receiving it. What’s the norm if any what to look out for.

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@amydunn, you might appreciate this discussion:
- New to Cytoxan (cyclophosphamide)—advice and help appreciated https://connect.mayoclinic.org/discussion/new-to-cytoxan-advice-and-help-appreciated

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