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FAP

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FAP

Postby irishmommy222 » Wed Aug 31, 2011 12:06 am

Anyone else here have FAP? Im 24. I was diagnosed this past december with Stage 3 colon cancer. No family history. Over 300 polyps from rectum to stomach. Had a complete colectomy with ileostomy. I just looking for people i could relate to i feel so alone sometimes and just dont want to feel like such a freak anyone cause the condition is very rare in my area.
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Re: FAP

Postby irishmommy222 » Wed Aug 31, 2011 5:36 pm

i was hoping there was someone here..guess not.. =( does anyone know of other forum sites for colon cancer or genetic conditions?
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Re: FAP

Postby RayGirl » Wed Aug 31, 2011 9:14 pm

there are quite a few in the club, so I will bump up your threads and hopefully one of them can respond. T

here is also another website with an ostomy support group that might be helpful.
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11
Clean scan:Nov-13
Port is out!

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."
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Re: FAP

Postby patrickm1587 » Thu Sep 01, 2011 6:26 am

irishmommy222 wrote:Anyone else here have FAP? Im 24. I was diagnosed this past december with Stage 3 colon cancer. No family history. Over 300 polyps from rectum to stomach. Had a complete colectomy with ileostomy. I just looking for people i could relate to i feel so alone sometimes and just dont want to feel like such a freak anyone cause the condition is very rare in my area.


I was 23 when I was diagnosed with stage IV, and like you, no family history of it. I only had one tumor in my colon, no polyps and radiation got rid of it so I haven't had to deal with a colostomy or illeostomy. I'm sorry for what you're going through. Feel free to PM me if you would like to.
I'm Patrick, I'm 24 years old-
Stage IV rectal cancer on 9/16/10, mets to liver & lungs
Folfox until 3/2/11
Reaction to oxoliplatin
Sirt 7/8 & 8/8
Starting back on folfox on 9/6
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Re: FAP

Postby Nickmark59 » Thu Sep 01, 2011 7:18 am

They have found polyps on both my parents my father gets them the most before I was diagnosed with stage IV CC and we did not think CC ran in family since grandfather had prostrate cancer that spread to colon but we came to find out thru tracing family history that a great grandmother had it on my mothers side as well. and with how cancer can hop generations Bingo I got it.

They often called it the wasting disease etc .so tracing exact cause of death back then was tricky. as medical science is not what it was back then.

It was same with tuberculosis which back when was called they died of consumption.

Good luck and good results.
CRC- IV 5-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Fol.
Temp Iliostomy for 1 .5 yrs.
http://www.nickmarkowitz.com
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Re: FAP

Postby irishmommy222 » Thu Sep 01, 2011 9:22 am

patrickm1587 wrote:
irishmommy222 wrote:Anyone else here have FAP? Im 24. I was diagnosed this past december with Stage 3 colon cancer. No family history. Over 300 polyps from rectum to stomach. Had a complete colectomy with ileostomy. I just looking for people i could relate to i feel so alone sometimes and just dont want to feel like such a freak anyone cause the condition is very rare in my area.


I was 23 when I was diagnosed with stage IV, and like you, no family history of it. I only had one tumor in my colon, no polyps and radiation got rid of it so I haven't had to deal with a colostomy or illeostomy. I'm sorry for what you're going through. Feel free to PM me if you would like to.




Pat from what i understand you have to have polyps to have FAP? i think its Lynch or Gardner syndrome where u have less polyps or none? I saw you said u had reactions to Oxaliplatin? I had horrible legs pains from Oxali my docs said they have never had someone have that issue before. Bad enough i couldnt even walk would feel like my muscles were twisting. so they stopped me 3 treatments shy of completeing. i also had one tumor it was 6 inches into my colon almost 7-8 cm in size it was just shy of spreading to my lymph nodes got lucky i guess.
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Re: FAP

Postby irishmommy222 » Thu Sep 01, 2011 9:23 am

Also Pat i have found another forum site that is so helpful look up My CRC Connections their amazing people.
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Re: FAP

Postby Puffy » Sun Sep 18, 2011 9:50 pm

My husbad was diagnosed with FAP in Feb. 2008 (Stage 3C). No family history.
Did genetic testing and concluded that it's considered as a genetic mutation.

If you have questions, feel free to ask...perhaps I might be able to answer as I now live and breath FAP 24/7.
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