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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?
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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
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.
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.
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3 ReactionsHi 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
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1 ReactionI'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.
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3 ReactionsWelcome 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.
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?
Not sure about the doxorubicin but I think so. Side effects not horrible yet. Nausea and fatigue