February 7, 2017 at 11:28 pm #94086marionsModerator
Jess…so happy to see you popping up on this site again. Fantastic to hear of the latest scan revealing NED, which makes me hopeful that it will be confirmed once more in March. It’s somewhat ironic that you have to deal with jaundice minus the disease presentation.
How are you feeling otherwise?
In about two weeks the entire annual cholangiocarcinoma foundation conference will be ready for view. In this you will find a presentation on intrahapetic liver transplantations. I will make sure to highlight it.
But, ultimately you may not even need to worry, you don’t have any visible disease.
I love your tips on jaundice and look forward to you expanding the subject matters to other areas as well.
MarionFebruary 7, 2017 at 11:22 pm #94085lainyMember
Jessica, we have quite a few CCers even Stage IV, who were told they could not have surgery and after the right treatments they have had successful Surgeries. you will see that Surgery is our favorite word followed by Stable. This is why it is so important to get other opinions. We call the nerves before scans ‘scanxiety’. Much good luck on the new scans and I will be heading your cheer leaders squad.February 7, 2017 at 11:02 pm #94084jessroseParticipant
I’m so glad you think that this would help. I was thinking of starting a blog, but never really got to it. I thought I’d test the waters here. A lot of these tips can be used by folks with many different types of cancers. We’ll see.
I actually live in the Philly area and go to the University of Pennsylvania for treatment and did a short stint at MSKCC as well. Unfortunately I don’t qualify for a transplant at this time (I’ve contacted several hospitals) because I had ICC. It will be two years NED if all goes well at my next scan in March (I’m already getting nervous) and they said the may consider me for a transplant in a few more years if the cancer stays away. My jaundice is from cholangitis I developed as a result of the hepatic arterial infusion pump that I was treated with at MSKCC, not because of any tumors.February 7, 2017 at 10:27 pm #94083lainyMember
Jess, what a fabulous post!!! I have been on here from the beginning and have never seen a post like this. I agree vanity does make one feel better no matter what the problem is. How can we feel good if we feel we look bad.
You just keep on sharing all you want, I had never thought of this side of it to feel better.
BTW I am originally from KCMO and I know you have some great hospitals in Topeka. There is also a great one experienced in CC in St. Louis called Barnes Jewish Hospital and they have a good reputation for liver transplants and resections. Thank you so very much for these interesting and neat ideas. I don’t have CC but I may try some of them anyway!February 7, 2017 at 9:30 pm #13013jessroseParticipant
This may seem like a trivial topic compared to a lot of them here, but over the last four years with this disease, I have learned a lot about how to minimize my side effects and how to hide the effects of my disease and treatment. Vanity may be seen as a character flaw, but on the days that I look my best, I feel better too. I’d like to pass along some of the things I have learned, mostly by trial and error. If this post is well received, I’ll try to write others.
I’m going to start with something that I am currently dealing with daily, I want to share my experience with how to minimize the look of jaundice. My T-bili averages around 15, but is stable. I’ve gotten as high as 22. I’m naturally very fair with red undertones in my complexion. On my good days, I look like I have kind of a yellowish tan and people don’t notice. On my worst days, I looked like I glowed like a tennis ball or highlighter marker. Obviously, it’s going to be harder to cover the yellow look on bad days, but what I am going to tell you will help minimize it no matter what. A lot of what I am going to say will be for those who are inclined to wear makeup, but there are some other things that will help anyone. Certain things will be friends and enemies to everyone.
I mean really hydrated. I’m sure you have a regimen with your doctor of medication etc, but you also need to drink lots of water. When I am dehydrated, I notice that I look more yellow. Keep a bottle of water with you all the time and by your bed. If you wake up in the morning and you look more yellow, start drinking. It will help flush some of that bilirubin out of your blood.
Certain lights will make you look more yellow and/or glowy. For me, direct sunlight and fluorescent lights are the worst. Some days it will even be bad during cloud cover. It varies. There are a few things you can do to minimize this, the first being hats with brims over your face. They will cover your forehead, which will minimize the amount of your yellowish skin exposed and keep light from directly hitting your face. Lots of stores, including department stores, Charming Charlie’s, Francesca’s, etc. have great hates and they are in style! For women, try fedoras, floppy hats, newsboys, buckets, etc. Most men’s hats other than beanies have some sort of brim. The second are glasses. Obviously sunglasses will cover your eyes, but even clear lenses will reflect some of the light and minimize the yellow in your sclera. I used to wear contacts, but now I almost exclusively wear my glasses (sometimes I’ll wear contacts if I’m going out at night). Get yourself a pair or two that you really like. Check out Warby Parker for some fairly inexpensive retro looking glasses. I’m a big fan and they are in style. Don’t feel bad about getting glasses with non-prescription lenses. Do what you need to do. Another tip is that if you are out to eat somewhere with lots of windows and it is sunny, try to sit with your back to the windows. That way the light won’t be shining right into your eyes.
The first thing I want you to remember that shine is your enemy. Get rid of anything in your current regimen that promises to increase glow, luminosity, or whatever marketing word they are using. The bilirubin in your skin will make you plenty glowly. You need matte everything! Find a moisturizer for combination or oily skin because it will add moisture without adding a bunch of shine. I like Neutrogena Oil-free Combination Skin moisturizer. Next, find a matte primer. I have been using Rimmel Fix and Perfect Primer. Primers are important because they smooth out imperfections and help keep your makeup on. Foundation is tricky. I am still in the process of finding the perfect foundation and it will probably take some trial and error on your part. I have tried Kat Von D’s Lock it, L’Oreal Paris Infallible Pro-Matte, Dermablend, and CoverFX. They all have good coverage but are very thick. I just bought some Rimmel Stay Matte Liquid Foundation. So far so good. It spreads nicely and stays on for a good amount of time. I keep a compact of CoverFX pressed matte foundation in my purse for touch ups. For powder, I love CoverFX Matte Setting Powder. Get a big fluffy brush for that. For color selection, you may be tempted to choose a color that is the same as your natural skin color. This is a mistake. You are going to need to go a bit more yellow or your will look unnaturally pale. When applying all of these products, make sure you cover your ears, neck, and whatever part of your chest is exposed. If you are wearing your hair up, make sure to put makeup there too. Full coverage foundations may make you break out more than normal. Make sure you wash it off before bed. I’m not 100% sure how to approach this if you have very dark skin, but I overheard a doctor telling residents that it’s difficult to see jaundice in these folks, so it may not be a big problem for you. Make sure you use a blush so you look more natural and healthy.
Purple is definitely your friend. It is the opposite color from yellow on the color wheel, so it will help offset it. I wear purple shirts and I use purple eye shadow. One thing you may want to consider is using a lavender complexion color corrector under your foundation. There was nothing on the market when I first started trying this, so I had to buy what was basically purple clown makeup. It was not ideal. Now for some reason there are a bunch of options available, which is great for us! You can try a lavender primer like ELF or NYX. I don’t think these do a lot though and they add shine. I really like the Sephora brand color corrector, but sometimes it makes my skin feel a little greasy. Color FX has one, but it’s more like a lipstick consistency and I find it difficult to spread over my whole face. There are others out there. Try a few products and see what happens. Don’t go overboard with the purple makeup because it can make you look greyish, which is not a healthy look. Lastly, if you have dark hair, try asking your stylist to add more of purple undertones to your color. I’m not saying you go full crayola here, but you can add some purple undertones and it may help. I dye my hair a dark red with very intense purple undertones because I think it’s fun. You don’t need to go that extreme though.
Well, I hope this helps you feel a bit better. Let me know if you have any questions. I have more appearance based advice and some more medical related advice too. Let me know if these are things you’d like me share.
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