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Battle with IVC Leiomyosarcoma since December 2021
Lilly W
3 Posts
My tumour was 15cm initially and reduced 30% after the first 3 months. Doctors cannot perform surgery since the tumour also connect to my liver an kidney. I fought very hard for my families and friends who love and support me unconditionally.
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
5 Replies
Whitelilies
2447 Posts

@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:

@Mia2020

@Melx98btg (Caregiver)

@chekki

@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

#leiomyosarcoma

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

Lilly W
3 Posts

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.

Mia2020
13 Posts

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.

Lilly W
3 Posts
Hi Mia,
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.
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