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CCA stress


#1

hey everyone, brief reminder that im 21, have had UC all my life, AIH for 10 years, PSC diagnosed a few months ago. Bile duct cancer is just something that wont leave my head, i am so stressed about it night and day especially with statistics that are so high sometimes that have been thrown out. i need to make sure from all your opinions that my routine check for it too is enough, and hopefully enough to ever catch it… my doctor said to do an MRCP annually but i asked for every 6 months so he said we could do that. he said CA19 9 blood work every 6 months and im thinking i should do it more frequently than that, more like every 2 months to make sure and catch anything. ive had to advocate for myself a lot in the last few years of horrible UC and i want to be on top of things but i also want to not overdo it if its not necessary. Im also just scared in general night and day of ever getting diagnosed and it a)not ever being caught b) turning into a death sentence. I also wanted to live in france with my family again for at least 6 months and have been waiting for colectomy to do so, but now with PSC and my constant worry for CCA, I feel like i need to be glued to my home base in California and do blood work and not miss a beat. basically i feel tied down already from this disease because of bile duct cancer proative checking and i want to make sure im being checked as much as necessary in case, without it destroying my life.


#2

Nlapeyre,
Hello again. It is very normal for PSC patients to get an MRCP annually and CA19-9 screening every 6 months. You are certainly overreacting. You need to move on with your life. At 21 years old you have your entire life ahead of you. You’ve got to try and stop thinking about PSC and all those things that “might” happen to you. You “might” get run over by a car on your way across the street, and you “might” cut your finger off with a kitchen knife slicing meat, but you “might not” either!
If you are getting the recommended screenings you will be just fine. These things don’t move that quickly and will show up with regular screenings. Please try and get a hold of yourself. Live life today, fall in love, get married, have children, plan and live your life on into the future, but you’ve got to STOP worrying about dying. We are all going to die one day, but you are going to kill yourself worrying and have a nervous breakdown. Please Nlapeyre, please stop reading everything on the internet and just live life. For your sake, for your families sake and for the betterment of all involved in your care. We are here for you, but we are counting on you to do your part too.

Mark


#3

Hi, Totally understand how you’re feeling having been diagnosed 3 years ago…Probably doesn’t help much but I’ve started taking enteric coated aspirin based on this research https://newsnetwork.mayoclinic.org/discussion/aspirin-use-may-help-prevent-bile-duct-cancer-mayo-led-study-finds/ . At least I feel like I’m doing something to reduce my risk of CAA although you may want to discuss this with your doctor first. My doctor pointed out that it also reduces the risk of Colon cancer.


#4

Have you looked into oral vancomycin? It can be a miracle (it is to my 20 yo daughter). Please google PSC and oral vanomycin to read up on it. There are clinical studies being done now but its been successful for 20 years now with studies done on the young (you). Specifically look at work from Dr. Cox at Stanford who discovered the correlation between oral vancomycin and PSC. If your doctor wont prescribe, ask on this site for a dr. That will (thats what we did and was given a name of a doctor and its been an absolute miracle for my daughter. Good luck.


#5

Hello Niapeyre,
I’m 17 years old and also had UC for all my life but I also had PSC for all my life. Recently I have been worried about cancer and/or my PSC gradually getting worse, but I should be worrying about college but you’re 21 and you gotta live your life normally. The more you stress your body will get worse. Go visit your family as soon as you get the chance, make some personal goals for yourself that’s not related to anything medical or your health, things like making a song if you’re a musician or finishing a painting if you’re an artist, et cetera. Make sure you surround yourself with wonderful people as well who will support you for example right now I have my wonderful boyfriend and friends who support me and whenever im down whether it be about my disease or something else they are always there to support me. I hope you find solace.

Toodles, Emma


#6

Hi mark, i know i always feel guilty posting being so stressed out when you reiterate the same thing to me, but i just wish i could hear comforting news about PSC and cancer and not always hear such negative things like how many people get it, cant find it, cant transplant, etc. I just want to be as careful as i can and get worried if i get caught up in life, i will miss signs or not catch things, which makes me too scared to live my life worry free. I wish i could have a little reassurance that i dont have so much to worry about but when you see such large percentages it makes me wonder i do.


#7

My UC is so bad, that i cant take aspirin. I am at the breaking point of colectomy though, so i wonder if i can take it after colon removal…?


#8

I have! I asked my doctor about it last week, and am waiting on getting the green light for it, but he said he was not opposed to it. in what ways has it been a miracle for your daughter?


#9

Hey! Im glad your PSC has been pretty stable for that long, and that you have a good boyfriend! I have a supportive one as well who also lived in NH growing up! I know stress isnt good on my body but i just dont know how to assure myself that it wouldnt be likely, or im doing the right things to check, because all i hear is high percentages and how real it is and it scares me a lot. Its so hard to live with stress of what if like this and just want to live life, but fearing i will miss signs if i do :frowning:


#10

I hate telling people to not be stressed out cause it’s hard to just stop panicking. But cancer is rare even if we do have PSC it’s still pretty darn rare and I feel like you are being extremely cautious with checkups so you shouldn’t have to worry about ‘missing the cancer’. And catching it early on is not a death sentence. Just a big ole heap of extra cells that need to get removed when it’s early on. And that’s so funny how your boyfriend also lived in NH, such a small world.


#11

I would just hope it is caught early on, given its claimed to be extremely hard to find at an early stage. Thanks for responding. Yep hes from Amherst? How is your UC? And have you ever been on any meds for PSC like Urso or Vanco?


#12

She was diagnosed with Stage 3 PSC in Nov 2017 and was transitioning into cirrhosis, all her numbers were about 10x normal. She started vanco in February and within two months, all her levels were normal and, after a test, it showed that her liver is actually healing. Time will tell how much it will heal, but we are just thrilled already at the progress. I would fight for it for sure. If it matters, shes taking 250mg, 4x a day. Many others take 150mg 3x a day.


#13

Oh yeah I’m pretty close to Amherst actually just an hour away or so. My UC is mild so far I’m having a colonoscopy I believe at the end of the month I still have to officially schedule it. For PSC I’m on Urso, two pills daily


#14

do you know what brand of vanco? ive heard generic, one that starts with an A, is the one to ask for?


#15

Thats awesome! Mine was mild for my whole life for the most part too. Just took a random turn last few years and now its time to take the thing out, but maybe it will be a good thing in a few ways :slight_smile:


#16

Yes, ask for the Ani brand. We get it at Walgreens. CVS couldn’t get it, but Walgreens keeps it in stock. You just have to ask them to get that brand and it takes them one day. You can show your doctor this site…it is filled with vanco success stories, and I have never heard of any side effect from the drug. There isnt a resistance with oral vanco, and it seems to work exactly where it needs to. Ill keep my fingers crossed that you get it, and that it works. It doesnt work for everyone, but it seems to work with many. It seems some insurances don’t pay for it, but many do. Please keep me posted.


#17

I wonder if all CVS dont carry it? I dont have a walgreens within 25 miles of me


#18

If not I’m sure you can find a local pharmacy. There are many people on this site that use Ani so it must not be that hard to find.


#19

Also, Vanco helps with UC.


#20

Nlapeyre,
My son was diagnosed with PSC and Crohns in 2016 at age 21. He’s never had any symptoms, for which we are thankful. He started Vancomycin in 2017 and within 2 months all his liver enzymes normalized. He takes 500mg, 3x a day. Since he can’t swallow pills, he takes a liquid with the medicine compounded. He gets the meds shipped to him by this pharmacy: http://www.cedrapharmacy.com/locations-1/
They ship him 1 month via Fed Ex overnight.
They have a location in Montebello, Ca.