kvolland
Forum Replies Created
-
Posts
-
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.
KrisVHi 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
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,
KrisVWelcome –
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
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
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
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
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
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.
KrisVSo 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,
KrisVLouie –
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
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.
KrisV
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
