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Yellow eyes (jaundice) yesterday & today, so an unscheduled visit to the oncologist. :(

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have mets to the liver, and my latest blood labs from 9/25 showed improvement in my liver function since I completed my radioembolism treatments 8/26. So I was surprised when I started developing symptoms of liver distress a couple weeks ago (light stools, Tang-colored urine). Then the last 2 days, the whites of my eyes have been a very unattractive yellow. My oncologist is on vacation this week and I have an appointment with him Monday to review my latest CT/PET scan, so I just sent him an email giving him a 'heads up' that we might have something else to deal with when I came in Monday. His oncology nurse called me immediately and told me to come in NOW; she'd have me seen by someone else.

So I drove in for labs and an examination. My bilirubin level was 3.7, "high, but not dangerously high", but the oncologist who saw me today strongly suspects a bile duct obstruction and is working to set me up with a gastroenetrologist next week for an endoscope and stent placement. Anyone ever have one of those?

I FEEL fine. In fact, yesterday my 'yellow eyes' went to Red Lobster for lunch with a friend and 3 hours shopping at TJMax. Today when I got back from my emergency doctor's visit, I made and rolled manicotti crepes for hours, and plan to have the grandkids sleep over tonite after the family comes for manicotti. I know this is serious if it goes untreated, and I could have pressed for more immediate action, but I have so many plans for this beautiful weekend. Anyhoooo, I won't need a Halloween costume if these spooky yellow eyes stick around! What a day!

Anyway, the GOOD news of the day is that, although I won't have my oncologist's official verdict until I meet with him Monday, the doctor who saw me today said my CT/PET scan showed NO NEW CANCER SPOTS, other than the lymph nodes we already know about!!! I took 6 months off of chemo to have those radioembolism treatments on my liver, so I was really worried that I'd have a pile of new tumors on this scan. & although it is too soon after the radiation to get a reliable PET scan of my liver, the pathologist noted that early indicators look "remarkable improved."

So a day of mixed messages, and surgery within the next week. Never a dull moment!

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Linda,
Sorry you are experiencing odd symptoms, but so happy to hear that you are feeling well and that your scan is good. I hope your doctors can resolve this issue easily. In the whole scheme of things, you've been through much worse. So I have faith you can sail through this thing.

Barneygirl's picture
Barneygirl
Posts: 90
Joined: Sep 2011

Sorry you are having liver troubles, but it sounds like your oncologist is on top of it and the stent will solve the problem. Your PET/CT scan results are fantastic and I'm glad you are feeling well and enjoying life!

Laura

Bluebird Bush
Posts: 28
Joined: May 2011

Linda, I am sorry you are having these new symptoms. If it is a duct blocking up I hope the doctors can put a stint in pretty readily and painlessly. Can the ducts be blocking up with no indication of new tumor? I have tried to look up radioembolism to understand what this involves but have not been able to find it on the internet. I am glad you are planning a really good weekend and hope it goes every bit as good as you plan. Please let us hear something after your visit with your doctor on Monday. I am praying for you, Geni

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Linda

I can't say what you should do--if I were in your shoes, I'd be in the sun as much as possible without getting burned. High bilirubin levels are toxic and you know your level already so you don't have to freak out about it. You are already excreting bilirubin in your urine & the sunlight might help encourage that process.

As your tumors died off, you had some inflammation & subsequent scarring which is probably blocking the bile duct. The other possibility is that your gall bladder is full of stones. Since you are not in any pain, the latter is unlikely. In any case, you might want to eat a diet low in fats & oils as you can't digest fats & oils at this time.

After the stent, you should resolve the jaundice over time--sooner with light therapy.

I'm so happy to hear your good news! Have a great weekend & take pictures.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks for your advice; I appreciate it and everyone's good wishes. I had to smile about your recommendation that I get some sun, as I have a super dark tan this year (darker than I've been in decades), between the gardening & the new pool & a week at the beach. Even when it's too cool to use the pool, I stretch out on a lounger and read a book between my projects and chores and fun. It's supposed to be sunny and in the 70's here all weekend, so I'll be in the sun at a football game and probably at the pool with the grandkids as it's heated & we crank it up when anyone wants to swim.

So you think that orange urine is a GOOD thing? It looks like Tang (do they even still make Tang?)

A couple of wierd things from today's labs: My platelets that were already low last week at 90 are down to 64 today. That's gonna knock Gemzar off my list as my next possible chemo, my oncologist doesn't like me getting repeated platelet transfusions. I can't imagine why my platelets keep dropping when I've been off chemo 6 months & wonder if I might have an internal bleed somewhere. Any thoughts on that. anyone?

& my potassium was borderline low for the 1st time and they've called in a prescription for me for a supplement for that.

& although my liver-specific blood work is still off, my Alkaline Phosphates dropped since last week.

Anyhoo, they're re-doing the labs on Monday so we can see if we need to pick up the pace here and get this stent in fast. I was told that the jaundice and crazy-colored urine and stools stop almost immediately once the bile gets flowing again. I'm to phone immediately if a get a fever or vomiting or diarreah (sp?) incoherent thinking, or intense itching, as those are the rest of the symptoms they look for that signal bilirubin build up (in addition to the yellow eyes, pale stools, & dark urine I already have). Can't wait to see my CA125 labs from today which dropped 9309 points after my radioembolism, but is still a scary 2042.

Someone asked about radioembolism. It's still not FDA approved for ovarian cancer, but my insurance covered it (to the tune of $500,000) and if you have liver mets it's worth exploring. Here's a link to an article about it: http://www.radiologytoday.net/archive/rt_071408p26.shtml

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Yeah, I guess that bilirubin has to go somewhere so it is going out thru your urine. Now that you described your tan, it's likely that the tan is covering up the rest of the jaundice--you don't just get yellow eyes in such a condition. And you are probably in worse shape than I originally thought.

I don't know how low your potassium is but you probably also have low magnesium (they never routinely measure magnesium as it is an "intra-cellular electrolyte"). Watch for heart palpitations and muscle cramps. The orange urine could be creating a diuretic effect but I suspect that is where you are losing potassium. Make sure you are keeping up a good fluid intake.

The good news is the alk phos is down--that leads one to think that your jaundice is less likely from an overall liver condition one that would cause portal hypertension but I am only guessing at that. On the other hand, your low platelet count would lead me to consider you as more of an emergency situation as your risk for hemmorrhage has increased.

When pressure builds up in the liver, it backs up in the veins of the esophagus--creating esophageal varices. These are varicose veins inside the esophagus just like you would see on someone's legs. What we call "hemorrhoids" are varicose veins of the hemorrhoidal veins in the rectum/anus. Should the veins rupture, you would be vomiting blood and become a medical/surgical emergency. Sometime's you don't vomit the blood but notice black tarry stools instead. I don't know if this is the reason for your low platelets or not.

Here's one of the problems with your situation: no one knows exactly what's going on until you have some kind of testing (ultrasound or endoscopy) on you. I would opt for an ultrasound ASAP--even before an endoscopy just so that the guy putting the scope in you has no surprises. You can learn a lot from an ultrasound of your liver.

I don't mean to ruin your weekend but the only additional thoughts I had on your situation were scary ones. There's an expression in medicine when someone is having a heart attack: "time is muscle"; another expression for when someone is having a stroke: "time is brain tissue." This probably applies to your situation, Linda, regarding your liver.

antcat
Posts: 272
Joined: Jan 2011

Linda, I'm so sorry to hear of what you're going through and really hope everything turns out good for you when you get the stent. I'm really glad that no new tumors have shown up and I'm glad you are having a good weekend. Hope everything goes well with your oncologist and keep us posted.

poopergirl14052's picture
poopergirl14052
Posts: 1155
Joined: Nov 2010

and you will get through this too. A colgged bile duct can me mananged and you will be on your way to ned. I am glad you are feeling well and enjoying yourself. After this is over go on vacation to Hawaii or Vegas and play the craptables...I bet you would win..val

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Linda, I don't know what to say. I am praying that everything is good news on Monday. I can't begin to tell you how much I respect and admire you. Everything you attempt, you go through it with grace. You are doing the right thing. Sharing and spending time with those grandchildren is the best medicine. I can tell by your posts that is one of the most important things in your life. Linda whatever you decide....it is the right answer for you.

Sending lots of love and hugs.
And all my prayers.

Linda

Cindy Bear
Posts: 563
Joined: Jul 2009

I am pretty sure they do still make Tang.. I'll look tomorrow at the grocery store. You are amazing, I get tired just reading your posts. You are such a little energizer bunny.. so much energy, so much living crammed into ea. day. Enjoy your weekend. I don't have any sage advice.. will be hoping and praying for good news and a quick plan of action.
Hugs,
Cindy

carolyn45's picture
carolyn45
Posts: 100
Joined: Apr 2011

I love that you keep doing what's really important to you even though you have every reason to just rest. Indeed you are LIVING in the present with such grace and dignity. My heart and prayers are with you as you head into this next hurdle.

kayandok
Posts: 1223
Joined: Jun 2008

you are simply amazing. You face every challenge with such grace. You inspire me today.
I am praying for you in this ongoing battle!
Hugs,
kathleen

Kaleena's picture
Kaleena
Posts: 1130
Joined: Nov 2009

Oh my, Linda! I don't even know where to start? Good news on the CT/PET scan (although I know you will get the full results tomorrow). But what a whirlwind for you with the blockage! But like you, you just keep on going. Making manicotti and shopping. A real trooper!

Anyway, I hope you are enjoying this beautiful Pennsylvania weather this weekend! My best to you at your appointment tomorrow.

Kathy

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Linda...

My middle son had a blocked bile duct and has a stent in place, even as we speak. They removed his gallbladder (full of stones) and will take the stent out in a few months. They kept him in the hospital about 3 days total and he went back to work after a week or so.

The stent should resolve the jaundice and hopefully the ascites, as well. Both of those are just symptoms and once they track down the underlying cause and treat it, you will probably be fine.

Keeping you in my prayers....
Carlene

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