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?
Liked by Dee, Merry, Volunteer Mentor
Today is a great. Breathing well, feeling the good feeling of living today to the fullest, joyful, faithful , hopeful day. I have found one day at a time only. Yesterday was trying. Hard to breathe and my heart rate kept hitting 160-200.
Which can make getting to a porta potty a huge challenge. Still am hungry so French Toast, scramble eggs and bacon. When you feel defeated is when you have the most strength to fight. I hope this will uplift a few of you. Because yesterday a few of you made it possible to be positive today. Thanks
Liked by Colleen Young, Connect Director, Jamie Olson, Dee
Thank you so much for sharing! I was diagnosed in Dec 2018 (at age 38) with Ewings type sarcoma in my right upper leg. Did chemo, surgery (with clear margins), more chemo, and 6 weeks of radiation (in Rochester). I'm just 3 months our from my last chemo, and it's really encouraging to hear about someone who has struggled with the same things as me, and is doing ok! Thank you!
I discovered a small lump on my back around my shoulder blade last spring. I was diagnosed with small cell sarcoma and had surgeries to get clean margins and reconstruction from April-July 2018. I also had chemotherapy from Aug-Dec 2018, because scans revealed nodules in my lungs. Chemo reduced most of them, but one has enlarged since my last infusion. I am scheduled for radiation in a few weeks. My sarcoma is very rare, although may be similar to Ewing’s. Love to hear if anyone wants to share.
Liked by Dee, erikahamilton
I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.
Liked by Colleen Young, Connect Director, Dee
It's really encouraging to hear about others out there struggling with the same things. Having a rare cancer is tough, but one of the things that bothered me is that you never get to talk to someone experiencing the same thing exact. I'm glad fo hear you guys are moving forward.
Liked by Colleen Young, Connect Director, Dee
Welcome to Connect, @saemlerpe. I'd like to introduce you to @ventibug and @me67, who also have soft tissue sarcoma.
Saemierpe, what type of soft tissue sarcoma do (did) you have? What chemo maintenance are you on and how are the side effects?
@kristennursepatient, how are you doing back at work? Are you able to pace yourself and manage fatigue?
@viviand have you started radiation yet?
@erikahamilton did you already finish radiation?
Liked by Dee
I'm doing good. Recovery takes more time than I was okay with. My blood counts are back to normal so I am pushing myself on a daily basis to get back to normal. It seems to be paying off as my stamina seems to be returning.
Liked by Colleen Young, Connect Director, Dee
I am also being treated by Dr Attia at Jacksonville for UPS (undifferentiated pleomorphic sarcoma). I was diagnosed 2 years ago and have been through radiation and surgery (at another hospital) and now on my second type of chemo with Mayo. UPS first appeared in my left calf and I had to have the soleus muscle removed. It has since metastasized in the lungs, but the treatment I am receiving now seems to be keeping it small, and not spreading. I choose to remain hopeful and busy. 😁
Liked by Colleen Young, Connect Director, Dee
Vivian, @suzanneb's husband also had a Ewing's-like sarcoma.
Vivian, Suzanne, @kristennursepatient @suzanneb @zaruhi and @erikahamilton, I'd like to suggest that one of you start a new discussion specifically about Ewing's sarcoma. What do you think?
Here's how:
1. Go to the Cancer group https://connect.mayoclinic.org/group/cancer/
2. Click START A DISCUSSION
3. Enter a title and message.
4. Click CREATE DISCUSSION.
Liked by Dee
Welcome, @fasthealer. There are a few members talking about UPS here:
– Undifferentiated Pleomorphic Sarcoma https://connect.mayoclinic.org/discussion/sarcoma-256d3d/
What type of chemo are you now on and how frequently? Do you have to travel far to get chemo treatments?
Liked by Dee
I'm on cycle 41, Every six week I have a blood draw, meet with Dr. Attia review my results and have my chemo. Since the start of treatment,I have been on Doxial. The first 5 treatments were difficult. After that I had little or no side affects. I'm lucky I live about 20 minutes from Mayo Jacksonville Campus.
Liked by Colleen Young, Connect Director, Dee
Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.
Liked by Dee
So, so sorry for your son. I will keep him & your family in my prayers. Hopefully, the chemo & treatments will be successful & he’ll be able to resume a more ‘normal’ life (…although, life with/after cancer is not normal—I guess it’s the ‘new normal’). Try to focus on positive thoughts.
Liked by Dee
@ld57feast
This is Tessa after her morning visit and massage. She loves her morning and evening visits on my lap. I love them too.
Liked by Colleen Young, Connect Director, Dee