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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.

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chuckeg | @chuckeg | Apr 5 3:55pm
In reply to @chuckeg "I've completed 4 treatments as of today. My "walk through", simulation was 2 weeks ago, and..." + (show)
@chuckeg

I've completed 4 treatments as of today. My "walk through", simulation was 2 weeks ago, and I started radiation treatments last thursday. No side effects. Treating site with Aquafor. Have 21 more treatments to go followed by 4-6 weeks waiting for surgery.

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...continuing radiation therapy with 4 more treatments to go out of 25. No side effects so far, except being tired. Have moderate to severe arthritis in lower back (lumbar 3-5) previously for 3 years or so. LMS is located in pelvis left side next to the psoas muscle close to my lower back. Pain in both areas enough for some mediation. No pain while sleeping or in a lounge chair. I've fallen several times in the last 10 weeks or so due to some pain and numbness in my left leg and with no consequences. I do use a 4-wheel walker. The biggest problem is trying to get up after falling. I am very pleased with the Kaiser system so far. My surgeon has a lot of experience with cancer patients. I've seen an oncologist, surgeon, my PCP, neurosurgeon, and pain specialists. In my opinion I am getting great care.

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xanthyhogg | @xanthyhogg | 2 days ago

My 13 year old beautiful son has Rhaddomyosarcoma. He had surgery on his cheek last week. We get a port this week and chemotherapy the following week. We are in Boise, Idaho.

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xanthyhogg | @xanthyhogg | 2 days ago

Rhabdomyosarcoma * 13 year old son Boise Idaho.

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celia16 | @celia16 | 1 day ago
In reply to @chuckeg "...continuing radiation therapy with 4 more treatments to go out of 25. No side effects so..." + (show)
@chuckeg

...continuing radiation therapy with 4 more treatments to go out of 25. No side effects so far, except being tired. Have moderate to severe arthritis in lower back (lumbar 3-5) previously for 3 years or so. LMS is located in pelvis left side next to the psoas muscle close to my lower back. Pain in both areas enough for some mediation. No pain while sleeping or in a lounge chair. I've fallen several times in the last 10 weeks or so due to some pain and numbness in my left leg and with no consequences. I do use a 4-wheel walker. The biggest problem is trying to get up after falling. I am very pleased with the Kaiser system so far. My surgeon has a lot of experience with cancer patients. I've seen an oncologist, surgeon, my PCP, neurosurgeon, and pain specialists. In my opinion I am getting great care.

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I just saw your post. How are you doing? Good to see your care is excellent. That means a lot. Sending you warm, well wishes!

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celia16 | @celia16 | 1 day ago
In reply to @xanthyhogg "My 13 year old beautiful son has Rhaddomyosarcoma. He had surgery on his cheek last week...." + (show)
@xanthyhogg

My 13 year old beautiful son has Rhaddomyosarcoma. He had surgery on his cheek last week. We get a port this week and chemotherapy the following week. We are in Boise, Idaho.

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I’m sorry to see this about your son. That sounds very stressful. Do you have support around you? I hope the treatment next week goes well. I’ll look forward to seeing how things go next week. Sending positive thoughts your way for you and your son.

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xanthyhogg | @xanthyhogg | 1 day ago
In reply to @celia16 "I’m sorry to see this about your son. That sounds very stressful. Do you have support..." + (show)
@celia16

I’m sorry to see this about your son. That sounds very stressful. Do you have support around you? I hope the treatment next week goes well. I’ll look forward to seeing how things go next week. Sending positive thoughts your way for you and your son.

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@celia16 Thank you so much. Things have needed to move so quickly that we haven't had a 2nd opinion. I was looking into the Mayo Clinic. Have you had any experience with the targeted Proton beam. I imagine, we don't have that technology here in Boise but I'll be asking. It's hard to watch your child suffer. It still feels like it should be us as his parents. This is my first experience with a support group. I'd welcome any suggestions on support or finding sarcoma experts. I do trust our doctors so far. That has been a surgery and meeting one pediatric oncologist. They have a whole team of pediatric oncologist.

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celia16 | @celia16 | 1 day ago
In reply to @xanthyhogg "@celia16 Thank you so much. Things have needed to move so quickly that we haven't had..." + (show)
@xanthyhogg

@celia16 Thank you so much. Things have needed to move so quickly that we haven't had a 2nd opinion. I was looking into the Mayo Clinic. Have you had any experience with the targeted Proton beam. I imagine, we don't have that technology here in Boise but I'll be asking. It's hard to watch your child suffer. It still feels like it should be us as his parents. This is my first experience with a support group. I'd welcome any suggestions on support or finding sarcoma experts. I do trust our doctors so far. That has been a surgery and meeting one pediatric oncologist. They have a whole team of pediatric oncologist.

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I wish I could offer you something that might be helpful, but I have no experience with cancer treatment except for a spot of Basal cell carcinoma on my temple several years ago. I did recently look into whether Duke Cancer center, which is near me had a proton beam for radiation treatment.

Have you tried Mayo Clinic or St. Judes? I think St. Judes does have the proton beam, but am not sure.

I sure hope things go smoothly and that you get good support from the support groups. I wish I could offer more. I hope blessings are ahead for your boy.

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kenroy | @kenroy | 10 hours ago

I don't know if it helps or not. But Doctor Herbert Schwartz at the Vanderbilt clinic was the only Doctor out of about 20 at skyline hospital that sent me to Vanderbilt I had a 13.5 cm sarcoma. Tumor on my femoral artery. Several doctors at skyline said Id die on the table. He didn't hesitate.My wounds not completely healed and I'm still struggling I worked in the garden yesterday and paid for last night, but I'm doing a MRI in a cat scan next month every 3 months.the best doctor I have ever had .Im cancer free after 10 years

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