I am pleased to see Lauren has such wonderful support in her mom and you. My husband is definitely my stone going through all of this. I would be lost without him. Welcome aboard (but sorry you have to be here.)
Thank you sooooo much! I was starting to get a little bummed and worried that this might be the last Christmas I had to spend with my husband. It's news I really needed to revive my hope!
Last Friday I had a repeat scan to have a new baseline before switching chemo drugs. I hadn't expected there to be any change since the cis/gem wasn't working. In fact, I was worried that with five weeks of no chemo I'd show a change in the wrong direction.
Imagine my surprise when my cell rang at work and the NP at my oncologists office was calling with results.
MY LIVER TUMOR HAS SHRUNK!
It was 10cm x 8cm x 6cm on the very first scan and this one shows it at 8cm X 6cm X 3cm! I've now skipped around my office telling anyone who will listen, called every family member in my phone and bawled like a baby!
Merry Christmas and thank God for answered prayers!
Never give up!
Re: Surgery on Stage IV Cholangiocarcinoma with Primary Sclerosing Cholang (18 replies, posted in Introductions!)
I'm stage IV as well and I was told that they wouldn't consider surgery because it is in my lymph system. Until it was found there, they were actually willing to try. Now they want to shrink the tumors and hopefully get it out of my lymph before considering surgery.
I do wonder if hormones play a role as well as other things. I know I saw a fertility specialist to try and preserve my fertility. He diagnosed me with PCOS which is hormone based as well.
Susie and Pam: OK, so I'm not the odd ball out. I feel a little better now (in an odd sort of way!)
I didn't wear make up either and until the last year or so I hated sushi. I have several friends my age that love it though. I also never was a big drinker. I have been overweight for my entire life, so I don't know if that has something to do with it. Definitely love food that isn't entirely good for me too. My oncologist seems to think that I might just be the lucky owner of a genetic mutation that makes me prone to cancers. Yay...
I'm trying my best to get more exercise. I lost a lot of tone and strength when this all started. I was in pain and just exhausted most of the time, probably because I could barely keep food down. I'm trying to get myself back to where I was and convince my oncologist that I can go back to my soccer team!
Susie: For me one of the hardest parts of being diagnosed was knowing. Most people fear the big C because of what they've heard. I work in a hospital where my unit often gets chemo patients (despite the fact we are down the hall from the oncology ward.) I did time working with cancer patients. I hadn't "heard," I saw first hand how horrible it was. I freaked out long before the doctor could finish telling me I needed an oncologist.
I don't know about you, but I found it was easier to cope if I put nurse me first. I would talk about it clinically as if it wasn't happening to me. But it's worked the best for me as far as coping.
I would love to know if there are reasons why young women are getting this type of cancer more. I wonder if it's at all linked to rising gallbladder issues in that same age group.
To all: I was wondering if anyone else didn't have liver related symptoms. I honestly never jaundiced and my liver tests are absolutely fine. My oncologist believes it was a small bile duct that the cancer started in and despite the moster being the size of an orange, I have never had any issues with my liver. It is, however, around my left adrenal gland, in some of my lymph nodes and my lungs. My doctors believe it is inoperable ONLY because it is already in my lymph system; otherwise, they seemed to think we could possibly resect most of it out (because that doesn't sound like a daunting task at all).
Anyway, I was just wondering if anyone else found that their livers weren't really as big an issue. No stents or drains.
I am a huge fan of one Ms. Kelly Clarkson. Normally, she writes really great break up songs, but on her most recent album I found one that makes me feel like things can only get better. The name is "The Sun Will Rise" and it is a duet with Kara DioGuardi.
So, this Tuesday morning I provide you with a song instead of a thought:
Thank you everyone. I'm glad to meet current patients and survivors. You inspire me to press on and keep blogging too. It's comforting to be among friends
I2Y Cancer Org (or I'm Too Young For This! Cancer Org) supports people who are ages 15-40 and helps them build a community of cancer patients their age. Each year, they hold an annual conference for caregivers and cancer patients alike. They also donate to cancer research and have chapters around the country where people my age can find support.
I don't know if this is the right board, but between now and February 28th, I am trying to raise money for this great group. They've been really helpful to me and I would love to see them stay around for other people who are diagnosed. If you have anything to spare, please support this great cause.
You can donate here: http://www.crowdrise.com/omg2012/fundraiser/JanineD23 (This donation in no way goes to me. The cancer summit poster on their page is when they hold their big donation drive and they put that on the pages of people trying to raise funds for them)
For more info on the group: http://stupidcancer.com/
Thank you, everyone.
Pam: Thank you so much! Writing that blog has been soul-saving at times. It's definitely kept me sane.
I totally understand what Lauren is going through with the weight issue. When I started losing, other than being concerned I was really excited. I had been trying to lose weight for a while and though I didn't want to lose it the way I was, it just felt nice to get into smaller clothing. I was really disappointed that it came back on so fast. As for the biopsy, I was adamant when they wanted more tissue that we were using my port. I wasn't going through that a second time. It was terrible.
Lainey: I will definitely take you up on that some time. My husband's parents live in Apache Junction, so we head up that way periodically. The trial I was recommended for was in Scottsdale at TGen and my oncologist said if this current plan fails he will write me a referral for MD Anderson, Mayo or even Sloan Kettering in Texas if I want.
Thanks everyone for being so awesome. I keep telling my family how excited I am to have found this board.
I was told on the intro board that I should share my blog over here. I can't wait to start reading all the other blogs people are sharing! I'm thankful to have a place to vent and to have found others that know what I am going through.
My blog can be found here: http://thisthinginsideme.wordpress.com
Thank you all for the warm welcome! I hate that we had to meet under these circumstances, but I am very thankful to have the added support.
Pam: 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!
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.