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rogina2336
Posts: 188
Joined: Apr 2011

Here is our journey thus far....Roger was diagnosed in Nov. 2010 and had his port installed on Dec. 8, 2010 thus our life changed. Stage IV with numerous liver mets!! Inoperable due to the mets in the liver surrounding the whole inside (middle) 65% compromised. We started with the norm 5FU, Oxy and leucavorin after tx #10 we stopped the oxy due to the numbness in his feet and finger tips. We continued on this tx plan and added avastin until Jan. of 2012 at which time we tried irinotecan, not so good it really kicked the tumors in the a$$, but it made Roger so terrible ill, vomiting, 24hr hiccups and drove his wbc down to .4 at which time he had to have neupogen shots. Went back on 5fu and avastin until July of this year at which time he developed ascites and was diagnosed with gilbert. They drained off 11 pounds of fluid at which time Roger started to feel so much better, the fluid returned and was in his legs so bad they turned purple, so he went on diuretics this time and the fluid came off on it's own. After we resolved all of those issues we started on vectibux he will have his 9th round of vectibux on the 14th along with a CT scan (39 chemo rounds thus far). So far we have gone through thrush, 2 bouts of c-diff, horrible allergic reaction to erbitux, ascites, gilbert diagnoses, low wbc and platelets. And through all of this as trying as things can be this amazing man of mine continues to work everyday, not as hard as he once did, but enough to keep him happy. I don't know how he does it, but he does and the only complaint he has these days is the rash is bothersome for him on his shoulders and around his neck. When we started his CEA was 1145, 4-11 211.3, 9-23 633.4, 2-12 1416, 3-12 1867, 6-12 2947.6, 7-12 4490.7 and 9-12 298 (Go Vectibux!!). Are you sorry you asked Chelsea? lol
Thank you for your sympathies in regards to my grandson, if you think cancer is a horrible disease try Mitochondrial disease, Alex was born June 14, 2011 and sprouted his Angel wings on Oct. 15, 2011, he had an undiagnosed Mitochondrial disorder, the Dr.'s were leaning towards Leigh's syndrome but just weren't able to pin down the exact strain.
Sundance you are always an inspiration hope all is well with you and yours. It was also nice to see Buzz post again. And i am so very terrible sorry to read about all of those who lost their battle with this disease. Tooooooo many!! Kim

Chelsea71
Posts: 1170
Joined: Sep 2012

Thank you for sharing your story. It sounds like Roger is a real fighter. I'm sorry for all you've been through. I hope you stay active on this message board. As a caregiver I find it very helpful. It took such a weight off my back to realize that other people were going through the same kind of problems as my husband and I. So nice to have a group of people that understand. Chelsea

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

This board was so much help to me when we started on the cancer train. I didn't realize until recently that I really may be able to help someone as much as they have all helped me, everything in the beginning was so scary and dreadful and of course I made the mistake of looking up all the statistics and that made everything even more scary, i was so full of doom and gloom and really believed that my husband and my time together was over, but now I am so full of hope and I have learned to appreciate everyday, hour and minute together and that Roger's diagnoses means that we have to live out the rest of our time with a chronic disease. Roger has cancer but cancer does not have him. I can honestly say that all the experience on this board with this disease is just amazing and so very helpful.

jen2012
Posts: 1251
Joined: Aug 2012

I'm so sorry about your sweet Alex. That is heartbreaking.

Thank you for sharing your story. My husband was just diagnosed in August and it's been a nightmare. It does help to talk to others who understand.

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