Hello all
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Cait, hate to meet this way but we have some things in common. I was a 61/2 year cancer survivor thanks to God, 2 strangers and Dr. Chapman at Barnes!! Sad to say my cancer has returned. The return of my cancer was a shock to me and my doctors at Barnes. The other interesting thing is as we were traveling home from Thanksgiving, I ended up stopping buying a thermometer and finding an emergency room ASAP. I had a blood infection, urine infection and Kidney infection, they said I probably wouldn’t have made it another couple of hours! I was at Mosaic Hospital in St. Joseph MO. and they couldn’t have been better or smarter, they realized it was way out of there league and as soon as I was stable enough they put me in an ambulance for a 6 hour ride back to Barnes!! It has now been 5weeks and after 10 days in hospital I am home with anti-biotic pump and drains and many doctor appointments!!I can not tell you enough how blessed you were to start at Barnes and now have one of there doctors as yours now!! I keep my story posted at http://www.catherinedunnagan.com There is a video I made with Dr. Chapman for Barnes on it!!
Can I ask who your doctor is now? Contact me if you would like to talk or share info!
Lots of prayers-CathyCait,
I have been thinking of you all week. Sending prayers. I am so glad you are on the discussion board and have gotten to know others, and are feeling the love and support. Keep us posted and know we are here for you! Sending big hugs!
Melinda
Cait,
I too somehow missed these posts and want to welcome you to our family. You have already seen how helpful and caring this group is. You seem to be doing everything you can to fight this and your age and great attitude is on your side, too. So glad that you found us although I would rather you didn’t have a need to. Looking forward to updates on how things are going.
Also happy to hear from you Susie and that you are doing so well. Always good to hear these success stories.
Everyone take care.
Love & Hugs,
DarlaSusie-
Thanks for sharing how well you’re doing; it’s especially lousy when we hear of young people like you and Cait getting hit with CC, but it makes it a bit more tolerable when there are positive outcomes.
Cait- Welcome. I’m not sure how I missed your original posts. It sounds like you have been very quickly emerged into the world of CC, but it also sounds like you have a great medical team and a plan for moving forward and beating it.
One thread I liked from the boards was helpful suggestions for first chemo days. It may have some lessons learned that could help in addition to your chemo training.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069
Best wishes-
CatherineOH, Susie, how good to see your smiling face! Thrilled that you are doing so well and Congrats on your Sister’s Wedding. Your great news note made my day! Heck, it made my week. I love it when a voice from Xmas past appears! Enjoy your Holidays and really, so good to hear from you!
Hi Cait,
I haven’t logged in in forever but I just happened to and I saw your post. You are similar to me in many ways.
I was diagnosed at 31 with Intrahepatic CC. about a 5cm mass. I had abdominal pain after eating too much pizza and it sent me to the ER.
I was lucky enough to have surgery right away followed by chemo and radiation.
I just had my 4.5 yr check up with my oncologist on Monday. I didn’t have a scan as I am now on yearly scans and the next one is in May. I did have my tumor marker checked and it was 11.5, down from 15 which is normal, so I was happy about that. My last scan at 4 yrs showed no cancer.
It was really tough getting hit with this at such a young age. I was trying to have kids at the time of diagnosis so I know all about the fertility issues. I did meet with a fertility specialist and chose not to freeze my eggs as I did not want to delay chemo. Very long story short, but I know I still ovulate despite all my treatment.
I really wish you the best. Please feel free to read my posts or message me directly with any questions. You will find a great support system here.And to the rest of my CC friends…Hello!!!!!!!!! I’ve missed you all and hope you are all well and had a fabulous Thanksgiving! I just got back from the Florida keys. My sister got married!!
Take care!
Susie
Caitlin….can’t agree with you more, knowledge is important. A cancer diagnoses throws is into a world formerly unknown to us. You are doing great. MORE POWER TO YOU.
Hugs,
MarionLainy – thank you! That helped put my mind at ease, and tell Orville he’s a punk and currently the only ‘person’ on #teamtim. The anti-Tim hashtags are too profane to print…
Marion – Thank you for the reassurance and resources. I will definitely read the pamphlet before our chemo teaching appointment tomorrow so I can better follow along. I’m finding the more I know going into appointments the better I understand when the doctor is explaining next steps in my appointments. Knowledge is power!
Cait
Cait……The biopsy removed cells or tissues for examination by a pathologist and confirmed the malignancy, hence I believe that additional scans are not necessary. The tumor location (one side only) is excellent news and a January surgery is not too far off. Given that you are looking at a few cycles of chemotherapy, a port may be installed. Karen, oncologist nurse, posted valuable information and pictures on this subject. Please use this link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13917The below link addresses chemotherapy in detail:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13867You will be rather busy tomorrow. I am sending tons of good wishes your way.
Hugs,
MarionCait, you can certainly ask the ONC if he feels you need a PET. Honestly, they really never know what they will find until they visit the area in person! We do try to stay realistically optimistic. Orville said to say HI to Tim and he should have paid rent as you are evicting him!!! You have “youth” on your side and a great attitude….a winning combination. And your cheerleaders here are getting ready! Full speed ahead.
Hi everyone,
Been a whirlwind of a few days. Went to work today after a half day yesterday to head to Rochester to meet my new medical team. I felt really good talking with my surgeon and my oncologist, and they both seem to have a lot of experience treating CC. They said the biopsy gave them the definitive diagnosis, and the second biopsy they did of my healthy liver looks great. They didn’t talk about doing any other scans though to make sure it isn’t anywhere else. Is that normal? Should I ask for things like a PET scan to be sure?
Tomorrow is a meeting with a fertility specialist then our ‘chemo teaching’ appointment to understand how that’s going to go. Next up is the PVE on Thursday and hopefully home sometime Friday to rest over the weekend. Then back to work Monday and Tuesday before heading back to Rochester next Wednesday for my first round of chemo. Feeling pretty nervous about that one, but other than that I feel like I’m in good spirits. I have a ton of support, so I know I can lean on others when it’s time (even if it isn’t normally my way).
My surgeon did share some good news that he has seen patients who have remained cancer free for years after their resection. He said one patient in particular was about my age 12 years ago when she was diagnosed, and she is still cancer free and sends him a card every year. He then told me I can send him cards too once I’m cancer free.
Lots of good stuff, but also exhausted and still quietly nervous at all the ways this can go awry. Shooting for surgery at the end of January. God willing.
Cait
Hey, Julie, how about a name for the new tumor. You know I am all for that and may I suggest Mickey, for the study in mice! Mickey Mouse!
Thanks to everyone for the quick replies and resources. I would love to hear each of your stories and will poke around the site more tomorrow to see how things are going for each of you so you don’t have to retype. We’re leaving for New York at 5:00 am tomorrow morning, so I’ll have some time in the car to do more digging in preparation for my appointment. Good news on the doctor front – the surgeon I have an appointment with on Monday was the head of the liver department at Barnes, and his former team was completely enamored of him. Here’s hoping he lives up to the hype!
We are also only about an hour drive from Roswell Park, so we’ll be reaching out to them this week as well to get a third opinion (Lainy – thank you so much for the suggestion). I have a great support network around me, but you all are right that the missing link is folks who know what we’re facing. I am so thrilled/relieved to have found this community so quickly and to already see responsiveness in its members.
Take care all for the night and tomorrow, and I’ll check again tomorrow and probably post after my appointment on Monday.
Cait
Cait….Welcome to our family here at CC.org. I can’t help you much regarding portal vein embolization, because I had surgery for my first tumor 21 months ago (5 cm intrahepatic tumor). After that, I had chemo. Unfortunately, I just had a recurrence with a 1.5 cm tumor and will be having surgery again Dec 7th.
I’m so glad to hear that you were near Barnes Hospital in St. Louis. Their reputation regarding our cancer is pretty reknown. It isn’t unusual for CC to be far down on the list for diagnosis. After two CTs where they first saw my tumor, a series of blood tests, a PET scan and a biopsy, one local oncologist looking at everything and two Mayo oncologist, they still wouldn’t committ to a firm diagnosis. Only the surgeon at Mayo was positive as to what she was seeing. At one point a doctor was seriously considering that I had mesothelioma, a lung cancer caused by asbestos (since I had nodules in my lungs….which were really caused by previous ailments, pneumonia, etc ). Only the pathologist from surgery gave the final answer.
Good luck with the portal vein procedure . I hope that works well for you and you can move on to whatever it takes to get rid of this thing.
Love the name…..I wish I’d have named my first tumor, but our time together (at least that I knew about it) was only a month from finding it to surgery. So, we would have had a short, and not so sweet relationship. LOL I’d name the new one….maybe I should. I may be taking part in a study that will replicate my tumor in mice….so there would be quite a few of the tumor’s offspring, so to speak, waiting in test tubes to replicate.
))) I don’t think I could name them all!!!! LOLThe people you meet here will be, by and large, some of the sweetest and most caring people in the world. And…I do mean the world. This cancer doesn’t end at our borders. Everyone’s willingness to help or lend an ear will amaze and renew you.
Julie T.
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