Diagnosed with sarcoma? Let's share

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?

@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Hi,

He just got home today on his 52nd bday (4 days inpatient) from second chemo treatment of dosage of methotrexate. He endures the chemo well like last time with main effect fatigue (no nausea). This time they pump tons of fluid through and agressivly monitoring so he is up every hour which is hard with good sleep deprivation. He says hardest is being lonely in hospital as it’s an hour away. The first round I made it down after work and was shorter stay. Difficult when you work full time and have 2 kids to try to keep as normal a schedule as possible for them. After the first round he was doing great and all the sudden a week and half later his hip pain went from 3 to 10 and couldn’t stand. Some pain meds and 3-4 days and it was gone. The are not really sure why it seems. It was scary and I hadn’t read about that happening overnight. So far though things are going well. I think the next round they may let him wear a pump and do it at home. Mayo second opinion came and they are in agreement with current treatment plan.

I’ll check out the last link and happy to help anyone.

@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Hi, I’ve posted on a few other groups here. I’m still trying to find out all of what I have & how to treat it. When I was waiting 2 hours for my orthopedic oncologist a sweet nurse came in with a huge sarcoma note book explaining how to use the book for access to help. My ortho saw it & said nothing. After a 7 minute meeting he sent me for 30 minutes of more x-rays, then a 2 hour 40 minute wait for a 3 minute appointment where he said he couldn’t tell by x-ray if the bone caner (in 90% of my body) has improved since my radiation or gotten worse. He never answers my question’s except to tell me I’m not a candidate for surgery even though I have a few broken bones. The next doctor I saw ( within minutes) asked, “Why do you have that book? You don’t have sarcoma.” I can’t remember if it was my brain tumor doc or my endo onco doc. So I just sat the book aside when I got home a few days later. I still haven’t wholly accepted this, I guess.
Maybe I need a better team or better communication. Well it just dawned on me! I can just call Sarco even if I don’t “fit” they should be able to answer if I have it. Just reading some of these posts today I found out there’s different kinds of sarcoma! It started in my thyroid b4 2006. They just found it last year. It’s in my pancreas & I’ve never seen a doc for THAT part. The MRI, or is it a CT, lights up over 50% of my face/head & I haven’t seen anyone for that either. The radiation/iodine uptake causes all the cancer to show. It’s very poor quality- smudgy screen & print. Is this considered average care or below average…normal? Is it my lousy Medicaid insurance? The doctors? The extent of my Stage IV? The fact I’m 60? I’m in a very rural town without support groups. I’m due for my follow up radiation/iodine uptake soon to see the results of the oral dose. That’s all the treatment I had almost a year ago. Just posting today mad e my brain click to call the sarcoma office. Thanks for being here.

Oh one doc said last year I have cancer in the soft tissues & synovial fluids & the like. I also just a few months ago found out the arthritis I have had for 20 + years is osteo. it’s because of this I can’t have surgery. I had 3 bone density tests in the past 2 years. All were high normal & there’s no answer as to how this could be with powdery bones that are about to break. Any suggestions would help. I have no funds to travel.

@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Your support is very helpful and important to his treatment. He will be more carefully monitored when you reinforce him to the staff when he needs more attention, like the pain medications. When you are attentive to his daily condition (and let the staff know that), he will not get shuffled from one person to another and miss important care for his treatment and for his comfort. Please continue to keep him and his care close to your heart. I assure you it has and will do LOTS of good!

@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I’d like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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I am concerned that you have not received the results of the radiation test. Call or email every day to find out what the results were or if the test needs to be redone. Write down who you talk with at each phone number, what day you called and what you were told, word for word. I prefer email because it notes who the contact person was, what time, and I have Exactly what was said.

It is possible that the results came back negative, so the case was filed without notifying you. Still, keep track of who says what on what day, so that you will not have more than one person telling you they do not know, to try someone else. Or if you find out something, the same person is more likely to remember and help you with the next step. It really helps if you have someone else go to any appointments with you so that they can verify that information with anyone else you speak with. They can also help you remember and sort it all out.

@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Hello Deb,
How did the six month scan go and what did you learn from the speech therapist? My voice is variable, good days, OK days and not so good days. The good news is that we still have our voices whatever the volume level. I am always glad to hear that you are doing well and fighting the good fight. Have a great Thanksgiving Holiday as we both have much to be grateful for! Jeff

@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Hi Jeff! I was just thinking about you! My appointment went very well- scan looks good and my surgeon is extremely happy with results. As a small piece of my cricoid cartilage remains, I will still be monitored, but I don’t go back for a year. He discussed doing some revision to tissue to open my airway a bit more and possibly an injection to damaged vocal cord to “pump it up” and potentially improve voice quality. Have you had any additional procedures? Today is my speech eval-I’ll let you how that goes. I agree, much to be thankful for! Deb

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn’t conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I’m supposed to get both chemo and radiation. I’m really afraid. Sorry I don’t know what else to say.

@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Deb, Hopefully you have had joyous Holiday season as we both have much to celebrate. I wanted to wish you a Happy and Joyous New Year’s filled with great health. I am also curious to see what you have been doing with speech therapy. My voice is continuing to get stronger and I am still running, all good! Have a great day, Jeff.

@deborahe

Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb

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Hi Jeff! Sounds like you are doing great! I found the speech therapy sessions to be helpful; the goal being to smooth the roughness of my voice. Good training and tips on how to breathe more deeply and relax the neck muscles and not try to force the voice so much. Your running may be achieving the same things!
Keep in touch and continued good health to you!
Deb

@zaruhi

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn’t conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I’m supposed to get both chemo and radiation. I’m really afraid. Sorry I don’t know what else to say.

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I’m sorry you have to go through this. It is scary. I have been dealing with a similar situation. First a little bit about about myself. I’m a 41 year old married father of 4. I’m a physician (pathologist) who did my training at the Mayo Clinic. In 2015 I was diagnosed with a synovial sarcoma that was growing on my diaphragm. I went through 5 rounds of chemotherapy and surgery. I was doing well until this last summer when I had a reoccurrance. I went through another surgery and 4 rounds of chemo. Now I’m recovering and there is no sign of cancer (let’s hope it stays that way).

You’ll be amazed at what you can handle. I found that with help of family and friends I was able to get through some very tough times.

@zaruhi

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn’t conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I’m supposed to get both chemo and radiation. I’m really afraid. Sorry I don’t know what else to say.

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Welcome to Connect, Superdave.
@zaruhi, how are you doing? Have you started chemo and radiation?

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

@fredscape

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

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Welcome to Connect, Fredscape.
I’m tagging @udderplace @kathythornjohnson and @godsgotthis who also have a diagnosis of liposarcoma to join the conversation. @udderplace also started this discussion to talk about chemo treatment with Gemzar.

– Liposarcoma: Starting treatment with Gemzar https://connect.mayoclinic.org/discussion/information-on-liposarcoma/

It’s tough when cancer comes back. I understand that Lartruvo (olaratumab) was recently approved by the FDA and now offers an alternative for people for whom surgery and radiation are not an option. Are you getting a combination with doxorubicin? How are the side effects?

@fredscape

I have been diagnosed with Grade 3 Liposarcoma of the abdomen. I had an approximately 5cm tumor removed Jan 27, 2017. the surgeons got the margins they needed but it is back. I have just started treatment with Lartruvo. The Doctors have not been very encouraging at all. Any information especially positive, would be greatly appreciated.

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Not sure about the doxorubicin but I think so. Side effects not horrible yet. Nausea and fatigue

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