New around these parts
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Dear Janine — I wish I’d read your personal blog before I responded to your post. It’s clear you know what you’re up against and how to proceed. Sounds like you have a great team supporting you.
There will be more forum members checking in here soon.
xoxo
DianePam: My oncologist was shocked when I met him the first time. He just keep telling me I was so young and it wasn’t common in my age group. The more research I found on it, the more I realized why he was so surprised; it is exceedingly rare in young adults. It made me start to feel really isolated; when I told most people I had cancer they instantly asked if it was breast or ovarian. They looked confused when I told them CC. We caught it so late that surgery just wasn’t an option. I tried to get into a clinical trial, but there isn’t any openings in the one I qualify for. No worries on the blog! I’ll read your daughter’s site as well. I started mine to keep family informed and have a place to vent my frustrations. I’ve found it rather cathartic at times.
Diane: From what I understand they submitted it for approval and are trying to get a plan B lined up in case that fails. My insurance company has been very accommodating thus far. Other than giving me a fight to have my PET scan, they have approved everything including a DNA/RNA test on my tumor. I am hoping my doctor can get this past them. I’m running low on options.
Thank you both for the warm welcome!
Janine
http://thisthinginsideme.wordpress.comJanine,
I took a peek at your blog. It looks really interesting and I can’t wait to read it . I’m sorry to say I am too tired right now. It is almost 1:00 am. You can check out my blog I write for Lauren. She doesn’t really want to know about CC or write a blog. So I do it for her. She just wants to live her life normally.
http://www.caringbridge.org/visit/laurenkunklier
-Pam
Welcome, Janine. You’ll find a friendly, welcoming, and knowledgeable family here.
Will your oncologist or primary contact your insurance company for an off-label approval? My husband had a similar dilemma, and ultimately insurance ok’d the off-label use of a particular drug.
I’m wishing only the best for you,
DianeDear Janine,
I am so sorry to hear you have CC. My daughter, Lauren, has it as well. She is 25. She also had abdominal pain and felt full all the time when she tried to eat. My daughter is on a clinical trial where she gets Gemzar, cisplatin, and 5-FU once every two weeks. She has just finished her 7th round of Gem/cis and is still hooked up to the 5-FU pump today. Her largest tumor has shrunk 2cm. each way but it is a huge tumor. The survival rates are very disheartening, but I feel with youth on both your sides, it could help. We will never give up hope and I hope you don’t either. I cannot believe the amount of young people that have joined this site recently. Most of the statistics say that this disease primarily affects older men, but it seems like a lot of young women are being diagnosed with it. I hope you visit this site often and participate in discussions. The members here are such a friendly bunch and you will instantly feel a connection. I feel like they are part of my family. Well, take care and I wish you the best of luck on your journey.
Love, -Pam
Hi everyone!
My name is Janine and I am a 30-year-old RN from Tucson, AZ. I was diagnosed back in August with stage IV CC with mets to the liver, adrenal gland, lymph nodes and lungs. My original symptoms were nausea, vomiting, feeling full when I started eating and abdominal pain. Being a nurse, I knew vaguely what I was in for with cancer, but I never expected this. I have an amazing oncologist, but his first treatment plan (Gemzar and cisplatin) only managed to maintain my tumor’s size, not shrink it. I’ve been very disheartened by this, especially since I made the mistake of looking up survival rates. Our plan is to start irinotecan, but my insurance doesn’t want to approve it for off label use. I’m nervous about all of this.
I’m so glad I found this site with people who are going through this or survived it. Any comments are welcome as I want to learn what has worked for others and meet people that understand what I am going through.
Janine
http://thisthinginsideme.wordpress.com
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