CF Bowel Cancer post-transplant?

[amstenzel]

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.

 

[triples15]

Hi Ana,

I'm SO sorry to hear that you are now dealing with cancer!

I don't have any experience in this arena but wanted to tell you that there is another member on here who has. Her name is Steph and her user name is PinkPigg. She is pre-transplant, but should still be of some support/help in the bowel cancer dept. I'm sure she'd be more than willing to visit with you. I copied a link to one of her threads:

http://forum.cysticfibrosis.com/threads/15133-C-is-for-cancer

She doesn't post here very often any more but you could maybe try to PM her. She is also a member on the other CF site so if you can't catch her here, you could try over there.

Thanks for posting re: bowel changes and risk of bowel cancer in gene carriers. Sucks that you went undiagnosed for so long. Treating cancer and being post-transplant poses a very unique set of challenges. Ugh.

Take care of yourself. I'm sure your positive attitude has already taken you a LONG way on this journey! Thanks for everything you've done for the CF community.

Keep us posted,

Autumn 32 w/CF

 

[PinkPigg]

Hi Ana,

I was diagnosed with rectal cancer over two years ago. I'm almost two years cancer free and am being evaluated for transplant at the end of this month. At the time of my diagnosis my physician mentioned he had another CFer that was post transplant with some form of colorectal cancer. He may be a good resource for you. His name is Sumeet Bhatia and he is affiliated with the Community Hospital network here in Indianapolis. Here is a link to his basic info:

http://www.ecommunity.com/fad/profile.aspx?phyID=225342

Feel free to call, email etc if you want to talk. Cancer can be a scary thing and sometimes you feel like you have little control of how it progresses. A big hug to you! (L)

Peace,
Steph