Connect
← Return to GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors
Discussion
GNET Sarcoma-Gastrointestinal Neuroectodermal Tumors
Sarcoma | Last Active: Oct 14 7:05pm | Replies (9)Comment receiving replies
Hello. I was diagnosed October 2017. I’m very battle worn after 6.5 years of treatment. 2 major surgeries, 4 ablations, 2 five day stretches of SBRT radiation and combining inpatient and outpatient chemo, I’ve had at least 65 chemo infusions. I’ve also done a lot of integrative and holistic therapies to rebuild my body and immune system. As you know any type of Sarcoma is rare, it’s tough because we have fewer drug therapy options. If you reside in MN, are you aware that there is a Sarcoma group called Rein in Sarcoma? Check it out, it’s a way to connect with other sarcoma survivors. How are you doing and are you currently doing any treatment ?
Replies to "Hello. I was diagnosed October 2017. I’m very battle worn after 6.5 years of treatment. 2..."
Connect
Wow, you've been through a lot. I've also had two surgeries, first one took my upper left lobe of my lung. I had chemo and radiation at the same time this past summer. Scans from October looked good but scans from December showed 2 tumors in the plura of my lung, one 9x5 cm, the other 3x3 cm. Also a lump started growing on my side thats now 3x3 cm also. I spent half of December in the hospital for pain control, it feels like something is trying to burst out of my body. I just started a new regimen of chemo earlier this month. Hopefully these tumors start to shrink fast and give me some pain relief. What type of holistic therapies have you used to rebuild your immune system? I haven't heard of Rein in Sarcoma, but I'll check it out. Is it online too or just in person?