Sangora story?

sangora said:

This is sangora
It's a little late for me tonight, but in the morning (thursday) I would be happy to share my story. I feel very fortunate. Til thursday morning. Sam Stage IV

Your Question
I am happy to share my journey with anyone who is interested. I was diagnosed with Stage IV EC on my birthday, 4/22/2010. Happy Birthday to me, right. The original tumor had completely sealed off my esophagus so I could neither eat nor drink anything. I had mets, albeit a small spot, to the liver. I was dischargd on 4/27/2010 and told to get my house in order because even with palative chemo I was not expected to last more than 3-5 months. I did come home and got my house in order, a week after discharge I met with my oncologist who said I had a couple of options. Treat as though tomorrow wasn't coming or do nothing and let the disese take it's course. It's not my nature to sit back and wait on anything so in less than 30 seconds I told him to pull out all the stops as I had nothing to loose.
He seemed to like my attitude. The following week I was started on 24/7 5FU with cistplatin and Epirubisin every 21 days. This went on from mid May til the middle of July. I had some hard days, but on the whole I did ok. I was a tube feeder so swallowing was not an issue. In mid July the tumor was responding so they decided it was time for radiation. I stopped the cistplatin and Epirubisin and went on Xeloda. Xeloda 2x a day and a blast of radiation for 6 weeks. I was fortunate in that I never got sick on radiation nor did the radiation effect my skin in anyway. My doctor is a fanatic about nausea and pain and had me on three different nausea meds and pain meds so I had no issues there. The radiation was completed in late August and I went back to the cistplatin and Epirubisin and Xeloda thru Oct. I was hospitalized twice in Oct so it was decided that I needed a break. I was beginning to eat and I wanted to enjoy the holidays. I stayed out of treatment from the end of Oct. til January 3 at which point I went on 4000mg of xeloda a day until the end of June. At this point Xeloda wasn't working anymore and a change had to be made. I had to go back on tube feeding.They kept me on Xeloda til mid sept when I began taxotere. I had 7 cycles of that and am now on a break. A ct can on March 13th will determine if I go back into treatment then or the break goes a little longer.
I have been very lucky with all this chemo. My body seems to thrive on it. My biggest problem is fatigue. Even so, I pick somethig every day to do that makes me get up, get dressed and do. Even if after I do the project I have to lay down for 2 hours, that's fine, I did something positive. I can tell you that a positive attitude is half the battle with this disease. I am beginning to have weight lose issues even on tube feeding so the disease may be on the move again. I can't worry about that. I have known from day one that I would ultimately loose this battle, but am giving it my best effort along the way. At this point after 2 years, I have had no additional involvement beyond the original 2 sites and the liver has basically remained stable since the beginning. Sam Stage IV

sangora said:

Your Question
I am happy to share my journey with anyone who is interested. I was diagnosed with Stage IV EC on my birthday, 4/22/2010. Happy Birthday to me, right. The original tumor had completely sealed off my esophagus so I could neither eat nor drink anything. I had mets, albeit a small spot, to the liver. I was dischargd on 4/27/2010 and told to get my house in order because even with palative chemo I was not expected to last more than 3-5 months. I did come home and got my house in order, a week after discharge I met with my oncologist who said I had a couple of options. Treat as though tomorrow wasn't coming or do nothing and let the disese take it's course. It's not my nature to sit back and wait on anything so in less than 30 seconds I told him to pull out all the stops as I had nothing to loose.
He seemed to like my attitude. The following week I was started on 24/7 5FU with cistplatin and Epirubisin every 21 days. This went on from mid May til the middle of July. I had some hard days, but on the whole I did ok. I was a tube feeder so swallowing was not an issue. In mid July the tumor was responding so they decided it was time for radiation. I stopped the cistplatin and Epirubisin and went on Xeloda. Xeloda 2x a day and a blast of radiation for 6 weeks. I was fortunate in that I never got sick on radiation nor did the radiation effect my skin in anyway. My doctor is a fanatic about nausea and pain and had me on three different nausea meds and pain meds so I had no issues there. The radiation was completed in late August and I went back to the cistplatin and Epirubisin and Xeloda thru Oct. I was hospitalized twice in Oct so it was decided that I needed a break. I was beginning to eat and I wanted to enjoy the holidays. I stayed out of treatment from the end of Oct. til January 3 at which point I went on 4000mg of xeloda a day until the end of June. At this point Xeloda wasn't working anymore and a change had to be made. I had to go back on tube feeding.They kept me on Xeloda til mid sept when I began taxotere. I had 7 cycles of that and am now on a break. A ct can on March 13th will determine if I go back into treatment then or the break goes a little longer.
I have been very lucky with all this chemo. My body seems to thrive on it. My biggest problem is fatigue. Even so, I pick somethig every day to do that makes me get up, get dressed and do. Even if after I do the project I have to lay down for 2 hours, that's fine, I did something positive. I can tell you that a positive attitude is half the battle with this disease. I am beginning to have weight lose issues even on tube feeding so the disease may be on the move again. I can't worry about that. I have known from day one that I would ultimately loose this battle, but am giving it my best effort along the way. At this point after 2 years, I have had no additional involvement beyond the original 2 sites and the liver has basically remained stable since the beginning. Sam Stage IV

Sam, you are remarkable. You just keep on with your positive attitude! Big hugs to you!

sangora said:

TerryV
Yes Terry, you are correct, I am still my own primary caregiver. Yesterday I came down with a bacterial lung infection was running a fever and not thinking really straight. I did forget to mention the caregiver piece. From time to time I have had to get home health in for crisis care but that's all. I am using them now for the IV antibiotics. Sam Stage IV

Sam, Your story is a real
Sam, Your story is a real inspiration. For all the newbies, it points out that no one is a statistic and no two people react the same to treatment. And in you I see ,that the best way to fight the beast is to keep a positive attitude.
Prayers are with you,
SAndra