u/Sarc-warrior22

I just got back from seeing Dr. Tseng, a surgical oncologist that specializes in retroperitoneal cancers. City of Hope in Duarte was amazing and efficient. I was told that my tumors could not be resected by University of Chicago and my treatment options were running out. I did my research and found Dr. Tseng, who has performed these surgeries successfully. So I decided to make the trip and see what his opinion was. Glad I did this because it seemed like there wasn’t any hope in sight. We are now planning to go through with radiation, chemo and then to surgery sometime in August!

I have a company paid life insurance and the option through Fidelity to pay for Group Universal Life Insurance. Would the optional GUL be considered company provided or would that only apply to the one that the company provides at no charge?

Met with the surgeons yesterday and it now went from doing a partial surgery to not being able to operate at all. I told them I was disappointed in that back in December / January, we could’ve successfully removed the tumors but they wanted to try immunotherapy and now we are at an inoperable state. They are meeting with their tumor board today to discuss things that may buy me more time but was simply told, we are about at the end of our rope with options. I’m going to try Burzynski clinic for a few months and see what the three month scan shows. Hopefully the treatment will work like others that I know went down there. Otherwise, it sounds like it’s a go home and enjoy whatever is left type of thing. myxofibro sucks.

I’ve been battling Myxofibrosarcoma sarcoma since 2018. started in right thigh. NED for 5yrs before it showed back up in my lung and a year later on the hamstring side of the same leg. Three months later on my followup scan, a big tumor in my perotineum and 4cm in pericardial lymph node. I’ve been through multiple surgeries, radiation, and met my lifetime max of AIM chemo. Opdivo and Yervoy immunotherapy had no affect and now we are going to try Gemtax. Seeing the surgeons Monday to talk about the risks involved with an incomplete resection. Sounds like if this doesn’t work, we are down to pazopanib. They don’t think any of the latest clinical trials will work since I didn’t respond to the immunotherapy. I felt all along that the doctors were very optimistic and even when it was found this time, the surgeons were confident that the tumors could be removed. They wanted to do immunotherapy first and now I wish they’ve done the surgery three months ago. After discussing that this didn’t work, I felt a complete shift in them and it was like they couldn’t wait to end the conversation. You tell me best case we can buy you a few more years and practically said ok we will be in touch. Anyone else felt that way or have similar experiences?