I am very glad I found this platform. I hope I can receive support and also contribute my experience and be part of it to support others.
😁 lilly
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@Lilly W Hello Lilly from ONT, from another Lilly, from ONT!
So glad you connected here with us….and posted your first message.
I checked the site, for other members/caregivers, for LMS…..
Please meet:
@Melx98btg (Caregiver)
@FiFoFa (From ONT !!)
Thank you so much folks….if you could share your experiences here/caregiving too, with Leiomyosarcoma (sorry if mis-spelled…)/LMS…..to support our new member @Lilly W on a similar path/LMS….much appreciation…..
Let's Connect & Support One Another!
Lilly….we are all here, for you!
Welcome Again
Whitelilies
Hello Lilly
from another retroperitoneal Vascular LMS patient. Had surgery in 2020 to remove gr.3 tumor from external iliac vein n artery. No other treatment but with follow up scans every 4 mths. This is a tough cancer to treat and Iam so thankful for the Sarcoma group at PMH/Mt Sinai. Also dealing with 3 other primary cancers concurrently, so life sure has been challenging. Do let me know how you are doing and I send v best wishes tomyou
hi Georgie, my tumour is on inferior vena cava. I can do surgery because the tumour is still too big and connected to liver and kidney. Anyway, it’s a long journey. Chemo is only option now. I changed my diet completely. Hopefully it will help. Lots of natural supplements like mushrooms powder. Juice myself….
thanks for you reply.
Hello @Lilly W I was diagnosed with LMS in October 2020 and because the tumor (found in my pelvic area) had not spread, surgery was recommended as the first step. Post surgery I had to do 25x radiation sessions which i finished in March 2021. My oncologist orders a CT scan every 4months. So far the scans have been clear but I know there is a high chance of the cancer returning in the lungs and/or liver. I am not ready to give up on life yet, and I am certainly not ready to leave my daughter. Like you, I am trying to focus on family and friends and appreciate the simple things in life.
Thanks for reaching out. My goal is to do surgery. So far it still not possible. Mine is actually spread. I totally changed my diet. So far I think I am doing well. Eating a lot of healthier natural food. Also whole food mushrooms powders, cactus juice with ginseng in it, good protein ……. Are very good for cancer . If some one have some good ideas of what to eat. Please let me know. I am willing to try anything.