spokanemom
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Welcome Kate! I am so glad you found this site and I hope you are able to search for answers. The forum does have a search function, on the right of the main forum page (with the list of all the forums), and maybe you can use that to search for posts with PSC mentioned.
Best Wishes,
VictoriaWelcome! I am so glad you were able to have surgery, and it sounds very successful. Make sure that your oncologist is familiar with cholangiocarcinoma, and is up on the latest research, such as the BILCAP study mentioned by Mary. My husband also had surgery last December, but he did not get clear margins and one local lymph node was positive. His oncologist, the entire hospital liver board, and 2 oncologists from out of town all recommended both chemo and radiation. My husband completed chemo at the end of June, and it was tough to start radiation in July because he felt so good and all the scans were clear. He also wanted to do everything he could to possibly fight this disease and felt that he should go ahead with the radiation. Radiation was really tough (he also did a different chemo drug at the same time) and he finished that at the end of August. He had his first post-treatment scan (chest, ab & pelvic CT with contrast) 2 months later, which was all clear. He will have another scan (ab MRI) after 3 months. His oncologist rotates between PET CTs (she likes best for skull to thigh), CTs, and MRIs (she likes best for detailed look inside the liver).
Please do not start exercising until you have gotten the all clear from your surgeon. Make sure to be specific about what type of exercise and stretching you can do. Call the office if you do not have an appointment and hopefully you can get these types of questions answered without having to go in.
My husband had his gallbladder, common bile duct, and 70% of his liver removed. He does not have any food restrictions, although he tries to avoid too much deep-fried food. He has never been a big meat eater and rarely eats red meat. He is a professor and took an entire semester off work, but that is because of the support he got from his employer and the fact that he spent 30 days in the hospital after his resection with multiple infections. Ugh! He maybe could have gone back to work 12 weeks after his resection (which was only 8 weeks after discharge) if he had to, but chemo was starting then. He was a bike commuter, but 10 months after surgery and 7 weeks after his last radiation treatment he does not have the energy to ride his bike yet. He is 43 and we have 2 children.
I hope all this info is helpful,
VictoriaToday we got the results of his Chest, Abdomen and Pelvic CT taken on Tuesday and he is still NED!!! Yea!!! He is doing really well and his next scan will be an MRI in January.
The symptom that bothers him the most is neuropathy in his feet and on his finger tips. That has gotten worse since treatment ended, and his doc said that was common. It might actually continue to worsen for a few months before (hopefully!!) slowly getting better over 2 years. Patrick feels like his energy is slowly coming back and he is really happy to be back on campus (he’s a professor).
It felt weird to have 3 medical appointments this week after not having any for a month. A nice weird though 😉
Hi Gavin,
I can’ see a link in your post and it sounds like something I want to read.
Thank you,
Victoria
Thank you so much for sharing your experiences with us. I am glad to hear that you are trying to enjoy each day that your husband is able to enjoy his food.
Best Wishes,
VictoriaI am so sorry for you, your friends and your family. I love imagining your house filled with friends and and happy kids, and your wife hearing that.
Best Wishes,
VictoriaYou are a warrior! I love your positive attitude about “not complaining because as it has not spread.” Thank for for sharing your journey because it provides such good information about the different treatment options that can be used. Hang in there!
VictoriaDear Silentk,
Thank you for sharing your experiences with us here I am glad to hear that your husband’s anger has soften some, although this is still such an unbearable situation. I am thankful you have a good hospice nurse you feel comfortable talking with and I hope she can provide answers. Don’t forget to take care of yourself and cut yourself a lot of slack.
Best Wishes,
VictoriaDear Kathy,
I am so amazed by you working, parenting small children AND handling all the medical stuff with such a fun sense of humor! Thank you for sharing and hang in there,
VictoriaTilly –
Such wonderful news!! And, I am so glad you didn’t have to wait days for the scan results.Catherine –
I LOVE to hear your Mom’s amazing story. Thank you for sharing and keep us posted. Congrats to your daughter too!Victoria
Dear Tilly,
I am so glad that Patrick’s news is inspiring to you! He is actually feeling a little better today. Scananxiety is horrible! I will be sending good thoughts your way and hope that your husband proceeds smoothly on to your next phase of treatment.
Best Wishes,
VictoriaFour days ago, my husband finished his scheduled 5 weeks of IMRT with 5FU Mon-Fri (I thought it was 6 weeks, but 1 week was just planning). His PET CT from before he started radiation still showed NED, and all inflammation from the PET CT in February was gone. The docs were correct when they warned us this last part would be the toughest on Patrick. He has been extremely fatigued and nauseous since the third week of radiation. He lost 8 pounds in 10 days. He goes in twice a week for IV anti-nausea meds and fluids. They will check him for 2 weeks to see if those need to continue. He starts back to work full time in 2 weeks as well.
I was initially upset that his oncologist would not say he is in remission. I looked up the definition, and it seems that if you are NED with no further treatments planned, then you are in remission. I know it is just a label, but I WANT THAT LABEL!!! I tell everyone that he is in remission because it is a word they understand. They will not take his port out until he has had 2 clear scans, which makes sense. The first scan will be at the end of Sept and the second will be at the end of November if the Sept scan is clear. The chemo nurses told me that his doc is really conservative with the good labels, but I think hope is good!!! Telling us he is in remission doesn’t make us ignorant of the statistics regarding recurrence, but it allows us to celebrate this awesome milestone.
We are celebrating as much as we can while Patrick is feeling so horrible. The kids and I surprised him by decorating the car while he was in his last radiation. We wrote “We Beat Cancer” on the back and “Way to go Dad” and “Awesome Job!” on the side windows. Then, we stopped at Dairy Queen on the way home and (surprise!!) it was filled with our friends. I had warned them that I might have to cancel at the last minute if he was not up for stopping, but he said he could eat an ice cream cone. He ended up eating lunch there! The final surprise was a “He Did It!” banner that we hung on the front porch when he got home. We are sooooo happy, but we are anxious for him to feel better. We feel so blessed to reach this milestone in our journey!
Victoria
