Hi I am 12 years post lung transplant for CF. Last year, I was diagnosed with small bowel adenocarcinoma at 39, did surgery and chemo ,and five months after stopping chemo , it came back and metastasized. I had more surgery and am doing chemo again. My oncologists have never seen a CF -post-lung transplant pt with cancer before so I feel like I am playing doctor in this role as an expert of my body and doing my own research on PubMed, ect.
has any other cf adult out there had bowel cancer and how did you handle it with the docs? were you post-transplant ? if so, how did you handle the chemo and immunosuppressants?
Did you take any alternative treatments? I am contemplating alternative treatments but they are all immune boosting so that scares me with my new lungs.
my mother had bowel cancer 14 years ago as a CF carrier. It is 6.5% increased risk for CF gene carriers, FYI... if you notice a sudden change in bowel habits and none of your enzymes/miralax work, then consider bowel cancers, esp if you have a low hematocrit and are post-transplant or have a family history. Mine was undiagnosed for 2.5 years despite my gut feeling (no pun intended) that it was cancer. The docs just kept saying it was "CF"- yeah right...
thanks in advance if anyone can respond.
has any other cf adult out there had bowel cancer and how did you handle it with the docs? were you post-transplant ? if so, how did you handle the chemo and immunosuppressants?
Did you take any alternative treatments? I am contemplating alternative treatments but they are all immune boosting so that scares me with my new lungs.
my mother had bowel cancer 14 years ago as a CF carrier. It is 6.5% increased risk for CF gene carriers, FYI... if you notice a sudden change in bowel habits and none of your enzymes/miralax work, then consider bowel cancers, esp if you have a low hematocrit and are post-transplant or have a family history. Mine was undiagnosed for 2.5 years despite my gut feeling (no pun intended) that it was cancer. The docs just kept saying it was "CF"- yeah right...
thanks in advance if anyone can respond.