1

(12 replies, posted in General Discussion)

Duke -
Getting in on this one a little late. I would say that you should push to have it drained when YOU feel uncomfortable enough to want it done....some people wait until they are short of breath where others will want it done because there is enough pressure in the abdomen or clothes don't fit.

Two big reasons it happens is related to the liver getting stiff from disease (be it cancer, cirrhosis or other diseases) which allows the blood to kind of back up before it goes into the liver and the clear fluids leaks out. The other reason is due to not enough albumiin in your blood.....protein basically. It can be a combination of the two. I would suggest trying to increase your albumin intake....leans proteins like chicken, turkey, fish and eggs can help a lot. Diuretics will helps some too.

Mark had some before his surgery.....there was actually quite a bit.....I had teased him for awhile about looking pregnant before his diagnosis not realizing I was seeing ascites. Bad nurse, bad nurse! But it was so subtle that I just thought he was gaining weight. He kept some of it around for about 6 months after surgery. And your doc is right the often just use a big needle then just take the syringe off the needle and let it drain. Most docs I know usually drain around 2 liters but some will do more. They can also but a more permanent drain in if needed so you don't have to go to the hospital every time it needs to be done.

Hope this helps some. And hopefully you don't have too big of a problem with the ascites.

KrisV

2

(11 replies, posted in Good News / What's Working)

Hooray Lisa -
I am sorry you were having more pain but to get the scan moved up was a good thing and now you have the assurance that aill is well.

Hugs, KrisV

3

(11 replies, posted in Good News / What's Working)

There is dancing in the streets....not by me since I don't want to scare our neighbors off but I am sure someone will. His CA 19-9 came back today and it was 16.2 which is the lowest it has been since this started. Talked to Dr. P a bit more and he says that with this protocol he does.....if you complete it and survive it then after two years the survival rate goes up quite a bit. I told him I guessed he killed off those who wouldn't make it anyway smile It's a good thing he knows I am joking with him.

SO we get to go on our Anniversary trip with nothing hanging over us. Taking of Thursday and going to see some friends in SE Oregon and visit with my mom who lives in the same general area. My sister who has been a good support will meet us there too. Looking forward to some us time.

KrisV

Welcome Callie -
Many of us were lurkers before we were members, don't feel bad abut it. Sometimes it is all you can do just to put one foot in front of the other.
As with Lainy way to go on a second opinion and people to go to bat for you so you didn't have to. We were lucky that we just went from diagnosis to surgery in a very short period of time. I don't think I even thought of a second opinion but we had a great surgeon and ONC in Seattle so never felt the need.
My husband had a Roux-en-Y which is similar to a Whipple but his was quite complicated due to previous abdominal radiation. It's been almost 2 years now and we just keep on moving forward.

Keep us posted,
KrisV

5

(7 replies, posted in Good News / What's Working)

I love hearing the mile markers for everyone. So glad that there are those who have longer times to them. Yippee!

Congrats on the grandbaby. They are the best. We went from none to 5 in a very short period of time. Our daughter had a little boy 2 years ago and our son and his wife are in the process of adopting 4 ranging from 6 months to 6 years - three boys and a girl. They are so much fun.

Also HAPPY ANNIVERSARY! Ours is the 16th but we have way less years....it will be 13 for us. So glad to think of 50 years that is great.

KrisV

6

(11 replies, posted in Good News / What's Working)

I was so suspicious today that when they accessed his port to draw blood I made them leave it accessed so "Just in case" he needed a CT Scan then he wouldn't have to have another IV stick. He just rolls his eyes at me but grins and bears. I did have to de-access it when we got home because they didn't have any heparin to put in it.
Dr Picozzi just laughs at me.
We did get some questions asked today which was a first. I usually forget.....and I am such a proponent of writing them.
Does not see the need for the Shingles immunization right now. Says that once he turns 60 then maybe but no need right now.
Also he should continue to take his Ursodial for the time being. He says we can revisit that in May if everything is clear.
And he could have surgery on his shoulders IF he wants....he doesn't want.

Thanks everyone.
KrisV

7

(11 replies, posted in Good News / What's Working)

Saw oncologist today and everything looks good. Only did labs and a chest x-ray, no CT Scan but does not feel the need for it. Tumor marker wasn't back yet but he just was NOT worried about it at all. So back again in three months for another scan and labs then we can graduate to every 6 months....not sure I am ready for that but we'll see.

He did say IF they got the tumor marker back today and it was elevated again then he would schedule us for next month for a scan but he says he really is not worried about.

He laughed and told Mark that he was one of his stars since he was not only able to complete the whole nasty regime but that he survived it. His nurse said that most people can't do either the full 6 months of the Gem/Ox or they can't tolerate 5 weeks of the 5FU with the radiation. He also was very surprised that Mark was well enough to go back to work full time. And I said he had to go back to work because he was bored and costing me a fortune.

Big relief today. Thanks everyone smile
KrsiV

8

(142 replies, posted in Introductions!)

Yes, you can technically live without your liver but again yes, enzymes and insulin for the rest of your life. They actually try really hard to do do a pancreas transplant if they can....eventually if they can. Also sometimes if they do a Whipple for pancreatic cancer especially they will have to do insulin and enzymes too.

KrisV

After I read your post and was thinking a little more about what you said I realized what the doctor was talking about. It's not as common as the adhesions but it does happen at times too. And if there are adhesions forming they will be able to take care of them too. But yeah that would cause a significant amount of pain when the "sliding" happens which happens whenever it feels like it.

Good Luck and keep us posted.

Big Hugs, Kris

Porter, I am like everyone else, it's the best bad news I have ever heard. It's bad that you have to have surgery again but the fact that you are is good.....almost makes me confused. As for the rest of I think I know what the doc is talking about. Often when you have abdominal surgery they move the intestines around quite a bit and sometimes when they put everything back your body doesn't react really well to it. It can cause adhesions or scar tissue that causes the small or large intestines to "stick" together. It often causes pain when food tried to pass through the scarred areas. Mark had a previous abdominal surgery.....many, many years ago and they had a terrible time getting through the scar tissue to his liver. So my hope for you is that this will be an easy surgery since it is so close after that last one.

Keep us posted and you will be in my thoughts and prayers.

KrisV

11

(12 replies, posted in Introductions!)

Hi Amy -
Well, welcome to the family, sorry things have changed with Matt recently. I have followed his updates closely as his story so closely follows my husbands although my husband is almost 2 years out on his resection.
We are here for anything you need even if just to vent frustration because this is what this disease does to us, makes us frustrated.

Hugs, KrisV

Alison -
Welcome to the best family....one you don't want to be a part of but are glad you are.
I am sorry to hear about your partner's Dad and to be so far away, that must be difficult for everyone. It sounds like you have a good support network though.
He does sound pretty healthy for an 86 year old. i don't know very many that could safely drive that far at that age.
All I can say is maybe a second opinion may be in order. Getting a biopsy can be very difficult and brushings are often inaccurate at best. We did not know for sure if my husband had cancer or not until after his surgery. They were pretty sure he could have surgery on the tumor but we didn't know if it was cancerous or not until after surgery. There was that tiny hope that maybe they were wrong but after surgery we knew for sure. I didn't even know what cholangiocarcinoma was at that time and I am a nurse.
Good Luck and keep us posted.

KrisV

13

(142 replies, posted in Introductions!)

Matt -
My husband did Gemzar and Oxaliplatin for 6 months. The only real side effects that he that bothered him was the cold sensitivity.....he wore gloves all the time, two pairs of socks and long underwear most of the time.....he had to drink at least room temperature fluids. Other than that we pre-medicated for nausea and kept him on preventive meds for several days afterwards. He would get bloated but once he burped he was fine. Fatigue was a very small issue from him. He continued to work full through all 6 months of it. He would come home and take a nap. He also didn't do a lot other than work but he worked. Had a little space heater under his desk to keep him warm. Appetite wasn't an issue, he ate smaller more frequent meals but managed his weight keeping it right at the 220# he settled at after surgery. THE 5FU was what really go to him.

The port is really the way to got for chemo. It's one little poke for most people....he had to have two, they did pull the first out as he had three episodes of sepsis and they blamed the port but never were able to prove it was. He had three rounds of chemo with the port in then the last 9 with regular IV's.....it was awful the further we went the harder it was to find a vein, veins would blow, chemo would leak and cause pain.....Port was the way to go.

If you get the port be sure to talk the doc about placement. My husband's first port was on the left and was deeper in the tissue but that was the one that they took out. The second one had to go in the right side. My husband likes to hunt and the rifle butt goes against the right shoulder. His doctor was able to place it more toward the center of his chest and a little shallower so it was easier to access. There are those who have difficulty with their ports but that is the exception. They are nice for chemo infusion, blood draws and those nasty contrast CT scans.

Sorry you are having to have to go through this now. I really was thinking you were in the clear. Keeping you in my thoughts.

KrisV

14

(9 replies, posted in Members' Cafe)

I understand a little bit better now, Elizabeth. I too am a nurse and I guess when my husband got his diagnosis if I had slowed down long enough to think about what we were doing maybe things might have been different. We literally had three weeks fro definitive diagnosis to surgery.....and 5 of those days were either in the the hospital or running from one doc to another at the hospital campus. Of course at the same time out youngest son was diagnosed with thyroid cancer so asking questions and looking for second opinions went out the window.

I too am a nurse and have learned over the years that there are certain diseases that I would do very little for if I was diagnosed because we know how they turn out no matter what.....I am not sure in my husbands case this will be true....at least I hope not but I know the stats for this cancer. He has gotten to the point that if it comes back I doubt he will do anything.

Keep us posted.

KrisV

15

(9 replies, posted in Members' Cafe)

Elizabeth -
I would like to echo everyone's welcome to this board. I am sorry that you had to find us but you will learn a lot.
You are actually very lucky that yours was found fairly early. My husband was stage 3b which only skimmed by stage 4 as he did not have any distant metastasis. His was also perihilar tumor involving his left bile duct which had completely killed off the left side of his liver. He underwent a resection in June of 2013....it was a long surgery but they were successful in getting clean margins with the surgery. He did have one lymph node right near the tumor that was positive. He had 6 months of every other week chemo with Gemcitabine and Oxaliplatin then did 25 doses of radiation with continuous infusion of 5FU chemo. I won't say it was easy because it wasn't. It was a struggle and a fight for us but he is now almost 2 years cancer free. We have had some bumps but no return of the cancer.

I seriously encourage you to get a second or a third opinion on your cancer. One doctor may say it is inoperable when it may not be for the next. The first doctor we spoke to that identified it as  CC told us there was no way he would operate on it and there was no one locally that would.....we were in Olympia Washington to see this doctor. He sent us to a bigger hospital in Seattle where we met a doctor who was positive and was able to operate. We also had a wonderful oncologist and radiation oncologist.

Perihilar or extrahepatic CC has much higher survival rates than intrahepatic cancer....keep that in mind. There are probably cancer centers close to you. Please seek out a doctor that has seen many cases of CC rather than this being his/her first. Most docs in smaller cancer centers do not see this disease. And there is no set treatment protocols for this cancer like there is for colon cancer or breast cancer.

Hope this helps. But also it is your decision to make. We may give you encouragement but it is still your decision.

KrisV

Oh, Gavin you hit it right on the head there....no one can believe that. We have the best running back in the NFL and throw instead....and throw to the middle. I think you could hear the entire state of Washington groan at once over that. Oh, well still love them and there's always next year. And I am pretty sure it was the worst play called.

We have some troubles with the legal highs too. What we did on a Federal level was outlaw a bunch of the ingredients so that no matter what they combination they are in they are illegal. They have also gotten smart with some of the legal narcotics so that if you try to take it any other way than orally it will make you sick.....just pushed more to heroin but at least people aren't getting their meds stolen as much.....when I volunteered in the local fire department we used to have to take everyone's meds to the hospital with us when we took some one in. People would see the ambulance and break in after we left to steel drugs. It was awful....that has finally stopped for the most part.

Cough syrup is one I don't understand. Kids take it from home the drink the whole bottle at once. Get them high I guess. Oh and we see a lot of huffing which is sniffing of paints, glues and stuff....that WILL rot your brain. It just kills me to know this happens.

Be glad you guys have missed the meth epidemic....We've being dealing with it for about 10 years now....although now the neighbors don't cook it any more.....cheaper to import from Mexico.

UGH!

KrisV

Sorry you had to go through that Gavin. The old building my work was in had a recovery center in it too....just a set of double doors away and we were always dealing with the addicts....one gal came to work and they were shooting up in the entry way and doing some other x-rated stuff. Had to call the cops to get them removed. It was ugly.

We live out in the country on a pretty well traveled road about 6 miles from town. Every so often I have to walk the ditch and pick up the needles that are thrown out....very carefully of course. I also have to pick up the beer cans and other garbage. Heroin is an issue here along with Meth. See a lot of overdoses any more.

Hope the rest of the day is better.

KrisV

18

(19 replies, posted in Introductions!)

Hello Mary -
Welcome to the family that no one really wants to be a part of but you will always be glad you found us. I know where you are coming from my husband was diagnosed with stage3b in May 2013 and just a few days later my then 19 year old son was diagnosed with thyroid cancer. I cannot even begin to tell you the amount of comments I got from people about being strong, not crying, etc. I wanted to collapse on my self and curl into a little ball and cry until it was over. It wasn't an option. Luckily though I found these discussion boards and I can tell you there are some truly wonderful people on here. I have melted down more than once on here and felt better when it was done and gotten the support that I needed at the time.
It sounds like the hard part is over for you.....surgery. And that is the number 1 best thing you can be told. And the big question for most people right now is to chemo or not. There are people who have gone both ways. My husband opted for 6 months of every 2 weeks Gemcitabine and Oxaliplatin then followed up with 25 doses or radiation and continuous infusiion 5FU. He wanted to do every thing he could keep it from coming back. He is now almost two years cancer free. And so is my son.
Hang in there. Keep us posted.

KrisV

Depending on what strips you use, I could send you some. Mark has them on auto-refill and I pick them up once a month with my meds without fail and put them in the drawer with the rest of them.....the ones he is supposed to use and doesn't. I will have to stop it or the drawer will be too full. And I would change pharmacies too. I get frustrated with my pharmacy too but nothing like either one of you are dealing with. Although we are sharing a med this week.....we both take the same medication for blood pressure but he takes 100 mg and I take 50 mg.....the pharmacy could only get enough 50's to fill his prescription so he gets two and I get one. I don't understand how certain medications aren't available. And it's a common medication too.

And I will have  a Super Bowl hot dog or two for you Lainy. We are having a little party with just a couple of friends and Aly and her husband. Keeping it low key this year.

KrisV

20

(3 replies, posted in Members' Cafe)

Now added something else to me to see.

And please let's hope it doesn't catch on, we don't need another reason to burn one of our own towns down. I hate to think of it......but Duke can you imagine the amount of red tape someone would have to go through to do something like that just as a festival the way they do. I just cringe to think of it....it's too bad because we lose traditions.

KrisV

21

(34 replies, posted in Members' Cafe)

Oh, wow. So sorry for all of you freezing. We are on about day 5 of 60+ degree temps. It was almost shorts weather for us in the NW. I actually worked in the yard for a little bit each day. And clear blue skies, a little fog in the AM but it burns off quick. Might actually have to mow the lawn soon at the rate it is going....not me I think Mark will have to do it. LOL.

GO SEAHAWKS!!!!

Sorry had to throw that last bit in there smile

KrisV

Sounds good Duke. Feels so good to have all those plans lined up. You get a detour instead of a road ends ahead. Might be fun.

KrisV

23

(7 replies, posted in General Discussion)

Thank you everyone. ONC called and spoke with me for a little bit. He is not worried about the numbers being up. The bilirubin is still low....0.4 and it was as high as 13 at one point before surgery. Anyway he said we would do labs and the chest x-ray and see what he finds then decided on the CT. He doesn't want Mark to have the contrast unless he has to so I get that. He tells me to quit being such a worry wort.

PCP upped his thyroid. And he is slowly increasing his insulin....although woke up last night was a low blood sugar so we can't win. I know the blood sugar and cancer aren't related. He's just not taking as good of care as he should....typical man, starts feeling better and thinks he doesn't need to be as careful. He also snacks too much. But I am trying to get him and a couple of his office buddies to walk at lunch.

I restarted therapy this week along with a short course of prednisone. No herniated disc but some some soft tissue issues.....literally sprained by back. And as a Haha funny they discovered I have 6 lumbar vertebra instead of 5.....which is funny too because Mark has 13 thoracic instead of 12. I guess we were meant for each other.

Thank you everyone for you support.

KrisV

24

(9 replies, posted in Introductions!)

Helen -
Welcome to the family  here. It's one you don't really want to belong to but will glad you are. Sounds like you are already a couple plus to the positive with being diagnosed at stage 2 and being able to have surgery so I say WooHoo!
My husband was diagnosed stage 3b and was able to have a resection. He had negative margins on the second section but had a positive lymph node and some extension into nerves and lymph system. He opted to have 6 months of chemo which was 12 doses of Gemcitabine and Oxaliplatin then followed it with 25 doses radiation with continuous 5FU infusion. He wanted to give it every chance to not come back.
And has been said to chemo or not is a personal decision but remember if you start it you can always stop it if the side effects are worse than expected.I don't have any experience with Xeloda but there are plenty that have.
Good luck and keep us posted.

KrisV

25

(2 replies, posted in General Discussion)

I would too Lainy. Why would a doctor not want her patient to have ongoing support and seek advice from those who has gone before.
Good Job!

KrisV