Kristy's Friends

Kristy's Groovy Groups

About Me:: I was diagnosed with VIPoma, a rare neuroendocrine cancer, in 2006. I have a liver full of tumors as well as bone mets. My condition is not curable, but the cancer is very slow-growing and has been kept under control with chemo, Sandostatin, and Zometa. I am 45, married with one son, age 7, and live in Chapel Hill, NC. I work as a freelance writer and editor, and also manage an artists' colony based in Burlington, VT.

At 11:54am on November 26, 2008, Jank said…: Hey Kristy,
I will anxiously await hearing how your measurement goes on Dec. 23. The avastin is giving me some ass-kicking angina, but the condition was already there from the xeloda, its just happening again in full force. I don't think many people experience it, I just seem to be in the 1-2%. My oncologist threatened to take off the study because of the danger of heart failure, but my cardiologist stepped in and set him straight. I'm still better off on the study than not on the study.

You should start that blog. I think it ends up being a good outlet. I've found myself censoring my writing because one of my oncologists reads it (the uptight one) so I tend to put more humor into it. However, the family appreciates the updates.

Take care of yourself and have a great holiday. I know you and the Rad001 are going to do well together. I'm thinking of making Rad into a superhero....maybe a purple cape.....

jk

At 10:10pm on November 16, 2008, Jank said…: Hey, I am on Rad001 and the Avastin now. I go for my third cycle wednesday. it's the second time I'll take avastin. The side effects for me are fatigue, mouth sores and more angina, but all things that are pretty tolerable. the angina still doesn't seem to be as bad as the xeloda. And I still continue to work daily.

I'm glad they took you off the placebo. When will you measure? I measure for progress in Dec. Are you feeling okay on the Rad001? Are you on Avastin as well?

Take care, jk

At 7:01am on October 31, 2008, Sandy said…: HI Kristy, I have neuroendocrine cancer also. Mine is a bit more aggressive though they say. It arose from a colon tumor about a year ago. I have mets in my right lobe of the liver and lymph nodes. I am so excited to find this site and do some research on this cancer. There is so little known about it. I look forward to chatting with everyone on here!

At 9:04pm on September 2, 2008, Gina said…: thanks for the info...i will write that down and take it with me so i can aske about it...yes i would be willing to travel if needed...i want to make sure of everything just to know for sure....any info that you and other people have givn has been so helpful..god bless you and your family and everyone here

At 8:53pm on September 2, 2008, Gina said…: Well, I have had pains in my stomach ..that I thought was gas or something... I felt really bloated and it was in the upper part of my stomach on the right side...and was feeling very nausaus the pain was bad like contractions almost and i tried to use the restroom and it hurt so bad and i did pass a stool but never felt like i was empty and it felt like it was blocked....i have felt like that twice in the past year..anyway i went to the doctor and they sent me over for ultrsound thinking Galstones...then the ultra sound showed something like a lesion in my pancreas....then they wanted me to take a CT then they gave me EUS took tissue and came to the conclusion that it was islet cell...they said it seems to be a solid tumor that does not invade any major vessels...i must admit i am scared that once they get in there they may find something more....i asked the doctor and he said that it was not likely...but i am just scared because i have not felt like myself lately. i am just so sad all of the time...crying spells...i feel like i am going crazy....this has been going on for the past couple of years....i am really a happy person and enjoy life and everything in it :)....anyway I hope for the best...i will keep you updated and you keep me updated and if you ever need a friend i am here for you.

At 8:40pm on September 2, 2008, Gina said…: You may not be able to anwser this question, but if they are able to remove this tumor from me with suregery and they have to take some of my pancreas out...do you think I will be able to live a healthy life? When I thinkabout being unhealthy I get very sad when I think about my kids growing up and all. I dont mean to sound negative..I am human I am sure that is every mothers thought at first. I know one thing...I am sure glad that I met blessed (cindy) and she told me about this site...I feel so touched everytime I hear from someone. I want to be the best friend and support for everyone on here . prayers and thoughts for everyone :)

At 8:33pm on September 2, 2008, Gina said…: Hello again, you must excuse my typing ..yes i am from greensboro ...do you know if wake forest is a good place for me to go? The doctor at wesley long hospital is sending me there. Do you think they wil run more test on me?

At 8:25pm on September 2, 2008, Gina said…: Hey Kristy, nice to meet you. My tumor is very small 17.55mm I dont really know what to expect next. I have an appointment thurday at wae forest..all i know is they said it was an islet cell and would need to be removed with major surgery...do you know what kind of surgery this may be? I have been reading alt about the whipple and that sounds scary to me. I am also scared of just knowing that this is in my body.

At 12:05pm on August 23, 2008, Blessed said…: Kristy, since you started the NET group I thought I would make a suggestion and see what you think. As I read of what you are currently going through I wondered how it would be if all members of that group were asked (if they would like to) to post a discussion topic under their name. Each member would tell about themselves and their condition and then update it whenever they have scans, new treatments, needs for support, etc. It is nice to pop back and forth from each other's pages but this would be a quick and comprehensive way of communicating to the whole group. What do you think?

At 9:54am on August 23, 2008, Blessed said…: Hi Kristy! I am so thankful for all the info that you are providing! I joined the Islet Cell group yesterday. I was going over the messages and so excited that I will be learning more from a message board that has input from professionals. I also look forward to getting to know you at a more personal level too! Thanks again! - Cindy