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- July 9, 2019 at 8:04 pm
Hi Mike,
no you’re not alone, we are pretty much in the same boat with this stupid disease, but we have to keep on fighting. After being NED for 1 year, I developed a small bowel metastasis in 2017. I was rushed to the ER for the extreme pain and had to have an emergency small bowel resection. Three months prior to that, I did have scans and everything seemed to be fine or maybe they missed something, But anyway, the surgery was rough and I lost a lot weight while in the hospital, but slowly recuperated. I did complete 4 rounds of Yervoy/Opdivo after that and now I am on the Opdivo maintenance. This December will mark my 2 yrs on it. It’s tough but I know you can do it. Will be praying for you. Wishing you the best!
Rosa -
- November 15, 2018 at 8:24 pm
Unfortunately my NED status lasted only about a year. Last November, I developed a met in the small intestine and had to have a small bowel resection. I ended up in the ER as the pain was excruciating. After the surgery I did the combo Nivo/Ipi and after the last dose, I developed a serious itchy rash throughout my body and face. I was on steroids for about 2 months. I'm now on maintenance Nivo. My follow-up scans will be this Monday and I hope and pray everything will be ok. The fight continues………I feel like living on a rollercoaster, it just sucks!
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- November 15, 2018 at 1:18 pm
Bubbles is right on trying radiatons. Back in 2011, I had to have a thoracotomy for a lung met on the left side. The one on the right was too small for surgery, so the doctor decided for me to have radiation on that one, since trying ipi without any response. When I did the scans, the met was gone. I'm not sure if it was the radiation alone or the combination with ipi that did it. But anyway, just ask the doctor if radiation is an alternative at this point. Wish you the best. Love your picture with the baby.
Rosa
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- July 9, 2019 at 11:24 pm
Sorry Mike but I don’t remember the part of the intestine. The surgery was pretty bad as before surgery they had to insert a NG (nasogastric) tube through the nose into the stomach, and I had to keep it on even after surgery. I had it for about four days, and I hated it with a passion. I was in the hospital for 5 days and lost about 18 lbs. I could not eat anything while wearing that awful NG tube. But i’ve Had my share of major surgeries, an open thoracotomy in 2011 and a craniotomy in 2014. I feel the thoracotomy was the worst one as far as pain level and recovery time. Second place is the small bowel resection, and the craniotomy wasn’t really bad. I have been working and still work full time through all the surgeries and treatments, and try to make the best of it. Sometimes you really feel discouraged but we have to keep going. You can do it.
Rosa