1

(13 replies, posted in General Discussion)

Thanks all for the love and support. We are home now....tired but here. Mark came home on oxygen which has helped a lot with how he feels. He pretty wiped out as can be expected but happy to be here. Our kids did a great job of pitching in and making sure we came home to a clean house with minimal stuff to do. I will have to do tomorrow and pick up a few things.....grab bars for the shower and tub bench and some other odds and ends but it feels so good to be home.

I did get a nice long talk with the surgeon today with no one else around. Wonderful man and I honestly think he is as upset about the diagnosis as I am. I asked him point blank exactly what they found during the surgery. He says he found a 6 cm by 7 cm by 1.2 cm tumor with multiple smaller satellite nodules that look to be the same. They took a large section and under frozen slide in the OR there was no doubt that it was cancerous and adenocarcinoma which is the same classification of cancer as his cc. So as Dr Hubka said it stand to reason that it is mets from teh cc. He must have apologized 20 times about having to tell me the bad news. The pleuradesis did work around the left lung except in the area where the tumors are....they are unfortunately going to continue to leak some fluid because of what they are.

Spoke with the onc too. He is still wanting to see final pathology and then make a plan. He said that it will most likely be palliative at this point which I get. Because there are less than 2000 cases a year of pleural cancer whether mets or primary there was not a lot to go on for treatment. They would probably look at chemo and most likely the Gemcitabine again to slow the growth. We did talk about genetic testing which he says he would recommend IF they got a big enough tissue sample so we'll have to see what pathology says.

We got more years than we had. Mark and I were talking earlier this week and we came to the conclusion he was supposed to die when he was 14 with the Hodgkins but he beat it so these last forty years have been his bonus time and these last two years were his encore. I think we are both a peace now with what is happening (don't like it but accepting)

Love you all and thanks for the support.
KrisV

2

(13 replies, posted in General Discussion)

Hi all,
Well I guess I lied. They did the biopsy surgery and the initial pathology came back as stage 4 metastatic adenocarcinoma.....mostly like mets from tuye bile duct cancer. Good God....if someone can do it then it will be Mark. We will wait for final pathology before we get a plan so probably next week. I am guessing chemosince he cannot really do anymore radiation and it is such a weird spot.

Okay and I did more reading and guess what I found.....evidence that it rarely does metastasize to the pleura.... Usually found after death with autopsy....in 2008 Japanese researchers found it in 5 patients after death.....and apparently at the same times as diagnosis of the cc. Only in my life. Here is the link to that study. At least it gave me something to look at even of it wasn't the best of news.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2710741/


They were able to drain a liter of fluid off his lung and they were able to do the pleuradesis with the talcnso hopefully it won't come back. He has a chest tube in right now and is less than happy about that.....so sore.

So I guess we have now seen mets to the pleura with malignant pleural effusion. Still not too old to learn stuff.

KrisV

3

(13 replies, posted in General Discussion)

We have the docs stumped again which is not always a good thing. Out onc doesn't have a clue and is very open about saying that right now. They do not believe it is a return of the CC but if it is anything then it will be a new cancer. I did a bunch of reading (not always a good thing). There are a lot of things it could be and we will have to wait for the biopsy report. so glad they are just going to go in and see what it is rather then just keep hoping it shows up on something. And I have to give credit to a bunch of docs who moved fast. Onc doesn't think if can be anything too bad since he had scans 6 weeks ago that were clear. They are really hoping that is is leftovers from the pneumonia. The are going to go in and drain the fluid and they do a pleuradesis which is to put talc in between the ling and the pleural so the pleural adheres to the lung and he won't continue to have the effusion.

Kind of a rattling post since I am so tired, will keep all posted.

KrisV

4

(21 replies, posted in Members' Cafe)

Positive thoughts your way from our neck of the woods. I know things will go well for you and you will feel so much better.

KrisV

5

(14 replies, posted in Introductions!)

Liz -
Great news. We all love the word resection and now you are headed that way. So happy for you. Hopefully all goes well with everything else.

KrisV

Annie -
Sounds like you have been through pretty much everything. It sounds like a lot has been done....I am with Lainy though and maybe a second or third opinion. I also thing it might be time to ask you MIL what she wants to do. Does she sill want to keep fighting or is quality of life more important that quantity of life? That might give you the best idea of what to do. If she is done with chemo and all that then I would look into some sort of palliative care or hospice care. This would help all of you deal with this time of her life. Staying positive is hard while you are going through all this....sometimes its just smiling about the little things.

Best wishes,
KrisV

Welcome -
This is the best little family no one really wants to be a part of. Sounds like your mom is going to go through the same thing my husband did two years ago. He had hilar cc (Klatskin's tumor), the left side of his liver was basically dead. He had the same surgery as your mom....He had has left lob removed along with a good portion of his right. Other than a recent bleeding ulcer and some complications from that (pneumonia) he is doing very well and had even returned to work.
You will find lots of information and support here. I know I would have been a basket case without all these wonderful people.

Keep us posted.

KrisV

Lainy -

Bummer that you are having to have surgery but I think you will be so much happier with the colostomy and all that goes with that. Once you get used to it the it will be no big deal. My mother in law has had hers going on 40 years. She had hers for colon cancer years ago.

Some advice from a nurse: Have an emergency bag (mom in law calls it the "brown bag") that has a complete change of ostomy supplied and a change of clothes. Leave the supplies in it at all times and if you use then replace and clothes for the obvious reason. You never know smile
Always keep an emergency stash of supplies....stuff that you use only if you run low....my mother in law didn't do that and when we had floods she got in trouble.

There are others too but I will only spew all of my nusrey advice if you want it.

KrisV

Derin -
There were concerns about my husband having strictures or scar tissue shortly after surgery. They GI doc wanted to an ERCP and place stents but the surgeon did NOT want to have anyone go back in. According to the surgeon they can be a problem for some people over times as the tissues heal and shrink. In our case the surgeon put him on Ursodiol twice daily. It is a medication that can be given to people who cannot have gallstones removed.....if dissolved the cholesterol in the bile ducts so that it cannot bind to make stone. Our surgeon says that he uses it in those they have concerns over strictures as it keeps the bile flowing. His reasoning is that it's not so much the anastamosis getting too tight but that they do shrink and if there is any "clumping" of bile. I am not sure if it is working or not but we have not had any more discussions about ERCP and stents and it has been almost 2 years. Might be worth asking about.

KrisV

10

(6 replies, posted in General Discussion)

Balwas -
I would say call the Doc, yes it's a pain to have it replaced or re-positioned but if there is a lot draining to the outside and not the bag then it is possible the tub is plugged then it's not working the way they want it to. Also definitely you want to protect the skin. Most types of Barrier Creams will be able to protect it. You may ask if they Doc has a particular one they prefer you to use. but something that is liquid repellent will work so Desitin or A&D ointment
The other thing that could be happening and I only mention it because it happened to us and made quite a mess. It is possible that it is not bile. My husband drained tons of ascites shortly after surgery from all of his drain sites....the external drain and where they pulled the surgical drains. This was a clearish yellow fluid....it can look a bit like bile but is not as yellow.
Good luck and keep us posted.

KrisV

11

(20 replies, posted in General Discussion)

Home now. It feels good.
He will be on Ceftriaxone (Rocephin) until the 14th then sometime after that we go back up for the CT scan and chest x-ray. I am reading though everything they did up there and it sounds like they are pretty sure there is some sort of cancer again....not cc but more likely a lymphoma....we would never be so lucky as to have it be Hodgkin's again.

Sure has Mark down. He's thinking maybe he was meant to die when he was 14 and somehow beat that so now he's on borrowed time....or time he wasn't supposed to have at all. I guess be depressed right now is appropriate. I am more angry than anything else. Maybe give it a few more days and that part will wear off. It just sucks.

KrisV

12

(20 replies, posted in General Discussion)

Finally got everyone on the same page around here. I kind of hate having all the different specialties when we are in the hospital. We have infectious disease, GI, Onc, pulmonary and the hospitalists all chiming in. I told them yesterday they better get it together or I was just taking him home.

We are going home today with three weeks of IV antibiotics through the port then a week after the antibiotics are done we will come back up to see the Onc and have a new chest x-ray and CT scan done. Plan after that will depend on the pleura and if there is a bigger or continuous effusion.  Everyone agrees that there just is not enough time since the last CT and x-ray to really tell if it is stable, worse or better. Onc came in today and he really does not thing that it is the cc. He thinks IF it is anything then it will probably be a lymphoma.....Julie I know you said something about that. Onc doesn't think it's anything but pulmonary is pretty sure it is so there you go.

I think this was actually more scary this go around than last. When he passed out at home Sun am, I really thought he was dead....he just was so gray and clammy. Then when they did the procedure and he was still vomiting blood.....they kept him intubated and in CCU for several hours because he aspirated blood during the procedure. I really thought I was gong to lose him. But like the old Energizer Bunny he just keeps ticking away.

And this will give everyone a good laugh....he went out to dinner with our three boys Saturday night and they went to a Chinese buffet and he apparently had sushi and some fried squid or calamari. When he started vomiting the blood here in the hospital he had one of the docs freaked out when he vomited the squid and she couldn't figure out what it was.....tentacles I guess were pretty strange. I about died laughing when I figured out what she was upset about.

Thanks everyone. You all give such good support.

KrisV

13

(20 replies, posted in General Discussion)

So far we will know it's exudative effusion and it has WBC's in it which it shouldn't have. so there is some infection some where. I read the consult notes from the Onc and the pulmonary doc and they both think it is a cancerous process.....not related to the cc but probably related to the radiation so possibly a lymphoma.....there is even an enlarged node in the chest that has grown in the last 6 weeks.....ugh I hate it when they don't tell you everything. There will be some serious questions as soon as I can corner a doc.

I too have a tendency to blame it all on the cc but I know that there can be other types of cancer. Of course it would have to be another weird type of cancer. I have done my normal amount of reading and putting things together. Probably not a good idea but who knows.

He did tell me today that if it is cancer he doesn't want to do treatment which was kind of a shock to me since he had always said he would treat for as long as possible. I know he is getting tired of being poked and prodded. I suspect it's just the frustration of being in the hospital again.

I probably am going to go to hell because I have down played everything that is going on so that no one panics but if it comes back cancerous I will have to explain why I didn't say something sooner. I have one child though that suspects it is possibly much worse.....there is always that one.

I will keep posted.
KrisV

14

(20 replies, posted in General Discussion)

So far we know....nothing. The labs that have come back aren't showing anything other than the fact it's an exudate drainage meaning that it's coming from something that shouldn't be there. They did just confirm that the bacteria in his blood is from the GI bleed....bacteria back washed into his blood stream so that's no biggie really. There is also a touch of pneumonia so that "Might" be causing the effusion but no guarantees. They are talking about trying to do it again to get more fluid out. Mark is just grumpy at this point.

Julie - I looked on line some last night and couldn't see any correlation with the pleural effusion but we'll see...if it's rare and can happen then it will happen to us.


Thanks,
KrisV

15

(20 replies, posted in General Discussion)

I feel like we are starting all over here again.....the frustration and the worry.

Anyway Mark is in the hospital again, it feels like it was just yesterday we were going through this. It started out this time as a massive GI bleed....not related to the cancer at all. They are blaming it on Ibuprofen use for his arthritis. He spent two days in ICU because of blood loss and needing to spend one night on the ventilator to make sure he didn't aspirate any vomit (and yes it was Yuck Yuck for awhile around here).

Long story short, our Onc came to see him and because we were here and it was getting close to the 2 year mark he went ahead and ordered a CT scan. There was no evidence of disease in the abdomen, however, they found a small pleural effusion (collection of fluid between the lung and the lining around the lung) and some "changes" as the Onc put it on that pleural lining that had him concerned. So today they drained the fluid (only got 60cc when 1000cc is more normal) to run cultures and look for cancer cells. The C-word came up and I point blanked asked if it could be the cc coming back and he danced around without really answering my question which is really the first time he has ever done that.

So has anyone ever heard of metastasis coming as problems with the pleura of the lungs....I know it can be in the lungs which is common but Onc says that the lungs are fine, its the lining and in a couple of areas it looks thickened and nodules are present? Mind you 6 weeks ago he had CT and chest x-ray which were both fine. His CA 19-9 is fine, still down to normal. His blood counts are all over the place since they had to transfuse 4 units of blood with the bleed.

My biggest concern of course is a metastasis but God help me if this turns out to be another cancer all together. I think I would have to pack it in.  I probably am jumping the gun and worrying when I don't need to but that's the way my brain works.

Thanks everyone,
KrisV

Louie -
Welcome to the best little family ever. Your husband sounds a lot like mine. He was diagnosed in May 2013 with Hilar CC, Klatskin's tumor. I have been a nurse for almost 20 years and had never heard of it. We were in shock. On June 4th he had a 14 hours surgery with a left lobe resection, partial right resection, Roun-en-Y procedure along with lymph nodes removed....there were other things they did too but the resection was the important part. He spend 14 days total in the hospital due to the length of his surgery and some complications such as a blood clot and his external bile drain plugging up. He had gone through 6 months of Gemcitabine/Oxaliplatin chemo every other week. Then a short break the almost exactly a year ago he did 25 treatments of radiation with continuous infusion of 5FU. He was quite ill for a little while after the radiation but is now deemed cancer-free. His two year follow up is is a few weeks and were are happily looking forward to it.

We actually wend into the surgery not knowing 100% sure that it was cancerous, there was a slight (very slight) chance that it wasn't. Out surgeon did not want to risk an infection related to an ERCP just before surgery so the diagnosis came after surgery.

Also his Ca 19-9 was significantly elevated at diagnosis. It has been all over the place during treatment and only in the last lab check was found to be at 35.

Hope things continue to go well and keep us posted.

KrisV

17

(15 replies, posted in General Discussion)

Duke -
Good to hear that the diuretic is working and that you have lost the "pregnant" look. No one likes to look pregnant unless they really are. smile

KrisV

18

(15 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

19

(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

20

(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

22

(18 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

23

(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

24

(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

25

(188 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