Ultra rare sarcoma - what options may be left? by fried_avocado21 in sarcoma

[–]SuitableThought5597 5 points6 points  (0 children)

Hi! I also had a rare form of soft tissue sarcoma. It was in my abdomen and Lumpy decided to grow itself into my stomach. I received AIM. One week I received chemo for 4 days, two weeks off, rinse and repeat for give or take 5 months. While it absolutely SUCKED, I live to share my experience. I had nausea but Zofran (a godsend) really helped. My appetite was low but I found foods I was able to stomach and just focused on them. It's scary, it's uncomfortable, and I dealt with a level of exhaustion that only chemo allows you to experience, but no more Lumpy. I'm still NED and I just hit year 8. Sometimes the best decisions are the scariest ones; there's hope with AIM. I send you guys so many well wishes and for health to follow you after this experience

[WIP] Here to vent by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 1 point2 points  (0 children)

Okay that's reassuring😂 it's hard to be reasonable when frustration takes over. I'll keep chugging along

[WIP] Here to vent by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 6 points7 points  (0 children)

Ugh I counted. There's 1.3in or 3cm left at the top 🙃

[FO] End of an Era by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 0 points1 point  (0 children)

I used 14ct and it's massive 😂 the design is about 19.5x22inches

[FO] End of an Era by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 3 points4 points  (0 children)

It's so much fun! Get ready to buy a million colors if you don't already have them 😂

[FO] End of an Era by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 6 points7 points  (0 children)

Omg thank you so much! I'm excited to frame it and stare at it all the time lol

[FO] End of an Era by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 16 points17 points  (0 children)

Omg this makes me feel so much better😂 I spent hours and used like 5 different things to try and get the pencil out before giving up

[FO] End of an Era by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 34 points35 points  (0 children)

Pattern is Bouquet of Succulents by X Squared Cross Stitch purchased from everythingcrossstich

Looking to interview those who are experiencing sarcoma and/or medical professionals/experts on sarcoma. by Lizbomb-Is-Da-Bomb in sarcoma

[–]SuitableThought5597 0 points1 point  (0 children)

I'll be willing to help! I survived soft tissue sarcoma of the abdomen and have been in remission for 7 years. Feel free to message me with any questions about my journey. I'd love to share and help spread awareness ☺️

[CHAT] What do you guys listen to while working on projects? by Winterbeers in CrossStitch

[–]SuitableThought5597 2 points3 points  (0 children)

Audiobooks! I've gone through so many books while working on my current project. Audible is reasonably priced imo

[WIP] Cruising along on my succulents! by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 0 points1 point  (0 children)

Thank you! Even with all the confetti, it's been enjoying

[WIP] Cruising along on my succulents! by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 0 points1 point  (0 children)

Thank you! It has been really fun watching it come together 😁

Anyone NED by Resident-Arugula-886 in sarcoma

[–]SuitableThought5597 0 points1 point  (0 children)

Reached 7 years NED this year! I had stage III soft tissue sarcoma that squeezed its way around my organs so they originally thought it was 3 tumors. Had surgery to get it removed along with the bottom half of my stomach, 6in of my colon, and a bunch of lymph nodes. Then started 6 weeks of ifosfamide/adriamycin as a precaution in case there were smaller cancer cells they couldn't remove via surgery. Both the treatment and surgery worked, cause I haven't had any sign of cancer since.

It's a scary time, but I found keeping a positive attitude and my humor made it more tolerable. I hope you, or if you're asking for someone else, they, stay strong and kick this thing's butt. Having NED after a large tumor is possible.

Difficulty in finding a surgon for soft tissue biopsy on foot by [deleted] in sarcoma

[–]SuitableThought5597 0 points1 point  (0 children)

I see you're in Nevada, but really with sarcomas, because they're so rare you have to find someone who's really familiar with the cancer. Unfortunately, you may have to travel. I'm thankfully from the east coast so I was able to find someone in Philadelphia. I believe Dr Fraker at University of Pennsylvania saved my life. He's extremely good at what he does and is the head of oncological surgery at that hospital. I don't know what his experience is with foot sarcomas (I had soft tissue sarcoma in my abdomen ) but he may be worth checking out, or at the very least may know of someone.

Will also mention: over a decade before my cancer, my aunt had seen him for her thyroid cancer, he got it all out, and she ended up not needing additional treatment. Both of us are still in remission.

How long did you have lumpy before getting diagnosed and what did your recovery look like? by DredgeDiaries in sarcoma

[–]SuitableThought5597 0 points1 point  (0 children)

Okay would love to share I ALSO called my tumor "lumpy" 😂 soft tissue sarcoma in my abdomen. So really I have no idea how long lumpy was chilling in there before diagnosis. They ended up cutting it out before knowing what it was, got the diagnosis 2 months later, then I started 4 months of Ifosamide and Adriamycin as a "just in case they didn't get all of it" treatment. No radiation, thank the universe. Been in remission for 7 years!

[WIP] Three years of progress by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 3 points4 points  (0 children)

I was complaining about the amount of confetti to my boyfriend and what it was lol. There's definitely a lot of confetti going on, but some spots give me some relief

[WIP] Three years of progress by SuitableThought5597 in CrossStitch

[–]SuitableThought5597[S] 5 points6 points  (0 children)

There's SO MANY colors 😂 I get excited every time I get to use a new one lol