Diagnosed with sarcoma? Let's share

Hello @jonimclark,

Welcome to Connect. I'm so sorry to hear your dad has been diagnosed with such a rare cancer. I'm tagging @ecdhope who's talked about Erdheim Chester disease – a histiocytic neoplasm. You can read the discussion here:
https://connect.mayoclinic.org/discussion/ecd/
@jonimclark, could you tell us a bit more about this sarcoma? What tissues or organs are involved? What symptoms is your father managing?

It sounds like you have such a wonderful family, @kristennursepatient. I wish you all success.

@zaruhi I know the situations are different but crazy coincidence, I ended up in the ER on November 6, 2017 because of the kidney pain caused by my tumor that was found to be Ewing's Sarcoma (It took about 3 weeks for a definitive diagnosis). How are you doing? I have been getting alternating chemo treatments every 2 weeks, and had surgery after round 7, then 4 weeks off for recovery and will be starting round 8 tomorrow. I found that the odd treatments are harder on me (VCD, vancomycin, cyclophosphamine, and doxorubicin) I have ended up back in the hospital due to neutropenic fever and had to have blood transfusions because of my low hemoglobin each time. I hope your treatments are going well and would be glad to hear from someone in similar circumstances. I am only getting chemotherapy and surgery(done last month), radiation was ruled out because my tumor was undetectable on CT after only 3 rounds of chemo.

@kanaazpereira we have had many good offers from many family and friends but have not needed to utilize them because our children are old enough to care for themselves and each other. My daughter who is the youngest has stayed with friends/cousins to distract and comfort her. Family, friends and co-workers have been wonderful bringing us many meals. It doesn't get any easier, my first round of treatment- I was in the hospital and unable to attend my daughter's Christmas concert. It was live-streamed to Facebook, and I was so happy to be able to watch. My second oldest son had a concert a week after my surgery (I still had an indwelling catheter and was in significant pain.) I told him I was not going to make it to his concert and he down played it saying they had just started practicing the songs and they weren't very good at them. Luckily my oldest son decided to go to the concert and video record it for me. The first song on the recording featured him playing a solo with his saxophone. He was so sweet to try to protect my feelings. All of the kids help out around the house and if I need anything they are usually more than happy to help. It is usually me that has a hard time with things, the kids don't do things how I would- like folding towels/clothes or sweeping the floor. I am trying to let go of this but it's hard.
I am a nurse and miss work a lot- I became a nurse to take care of others, not to be taken care of. At least it gives me something to talk to the nurses about when I'm in the hospital.

Hello @boston2006,

As a parent, I can only imagine the strength you must need to be by your daughter's side, and to see your child go through this. I'm so glad you've joined this group. I'm also tagging @truk182 who has written about being diagnosed with low-grade myofibroblastic sarcoma on the tongue.

@boston2006, could you share a few more details about your daughter? How old is she? How is she coping with the amputation? We look forward to getting to know you and your daughter better, and I wish you the very best.

Welcome @kristennursepatient. I'm sorry to hear about your diagnosis, and so glad you've joined Connect, and that things are going well. @suzanneb @zaruhi have also talked about Ewing's sarcoma, and I hope they return to share their insights with you.
As a mum of 3, I can only imagine how stressful it must be to leave and put everything on hold while you stay in the hospital. Do you have family or friends who help with the kids?

Welcome to Connect, @djj1954, and thanks for joining with such great news! We are so happy for you! Fellow member @biceto had posted some questions about sarcomatiod carcinoma in this discussion, too.

@djj1954, would you share a bit more about yourself? Was the carcinoma detected early? Did you undergo any chemotherapy or radiation?

Hello @damlady2,

Welcome to Connect. Thank you for sharing your history with liposarcoma. I'm tagging @udderplace, who also started this discussion to talk about chemo treatment with Gemzar:
–Liposarcoma: Starting treatment with Gemzar https://connect.mayoclinic.org/discussion/information-on-liposarcoma/

I'm also tagging @fredscape @godsgotthis @kathythornjohnson who also have a diagnosis of liposarcoma to join the conversation.

Last year, the U.S. Food and Drug Administration (FDA) approved two chemotherapy drugs known as "orphan drugs"to treat liposarcomas – eribulin mesylate (Halavan) trabectedin (Yondelis) https://www.medicalnewstoday.com/articles/318771.php
Orphan drugs are treatments for rare medical disorders that have less than 10,000 diagnosed cases a year; the two drugs are used
to treat liposarcomas that have spread or metastasized, or that cannot be surgically removed and have failed to respond to previous chemotherapy regimens. @damlady2, are you familiar with these treatments?

I was diagnosed last year with a radiation induced pleomorphic sarcoma from breast cancer treatment 18 years prior. 2 biopsies and two surgical excisions were done. They removed 2 ribs, stage 2 with no treatment available. Just monitoring my lung with several 4mm and less nodules. Now I’ve been diagnosed with triple negative breast cancer in the same breast. I’m having bilateral mastectomy tomorrow then chemo in a few weeks. The oncologist is considering adding a drug to the chemo that has been shown to cover the sarcoma but only about 5% effectiveness. I have lots of decisions to make. I’m going to both Kellogg cancer center (with tumor board consult at Mayo) and now my breast surgery is at Northwestern downtown Chicago

My dad has been diagnosed with histiocytic sarcoma. Since the doctors say thay there have been only a few hubdred reported cases, the only option they have given is aggressive chemo. Has anyone else on this page had this type of cancer?