kvolland
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Lee –
My husband had a external catheter placement done about 5 days prior to his surgery so they could get his bilirubin down before surgery. He really had no issues with it although I know there are those that do. If they instruct you to flush it then make sure you get a prescription for prefilled syringes or they give you a bunch….it can be difficult to get those. Also keep a dressing around the insertion site so that if it leaks you can keep his skin intact….the bile will break down the skin. My husband’s stopped draining at one point so they went in and change the catheter. It wasn’t clogged things were just working better so they capped it and left it for a month.
I know there are those that have difficulty with it leaking around the catheter so it doesn’t flow into the bag and gets on the skin. This seems to just happen and I have never been able to say who it would happen to or not. Sometimes they do plug too which they can unplug and put in a bigger catheter. For my husband it did not seem to be painful just annoying.
Hope this helps and hope the catheter helps with the jaundice.KrisV
Dear Aiste –
You have very right in the world to be angry and to tell everyone what happened. If it stops even one more person from getting injured or dying then it was worth every bit of what you did. I would do too. There is every need in the world to do that. And I am very glad that you did.
We had one GI doc that was totally awful to us during one of my husband’s hospital stays. He walked in the room and basically told us what he was going to do. He made it sound like my husband would die if we didn’t do it….it had to do with him doing an ERCP and placing a stent….when we started asking questions and wanting to understand more he just left the room. In hindsight it was the best decision we made trough the entire 2 years.
It always amazes me what people will say. I know often times people mean well but they don’t always thing what they are saying all the way through. I will try to watch what I say a little better. I will try to be more understanding of people’s pain.
Hang in there,
KrisVKatia –
I am glad he got the stent. It will help although it may not get rid of it all. My husband had one before his surgery. He was able to drop his bilirubin from 15ish to less than 10. He luckily had no itching. Try to encourage fluids as this will help flush this stuff out of his system.
As for food you are right his tastes will change. My husband completely lost his taste for coffee and he was someone who drank 1 or 2 pots a day. He also lost his taste for beer another great loss in his mind. There were other foods that he didn’t care for anymore. Just keep changing things up. I know that red meats often start tasting metallic so things like chicken and fish are often better. Also you may want to stay away from metal eating utensils and go to plastic utensils to limit the metallic taste.
Good luckKrisV
Dear Minzzi –
I am with Lainy….you got shoved into a corner and no one really tried anything different. As far as natural treatments I am not sure that anything will really work on a long tern basis although in the US as medical marijuana becomes more popular I have talked to people who has done very well on that. Not sure how or if that is available. I know that conventional treatment is Gem/Cis which is usually fairly well tolerated by most people and often there is tumor shrinkage which can lead to surgery later down the road.
Also you could look at the UK or if you are able to come to the US you could try the Mayo Clinic in Rochester Minnesota or MD Anderson in Texas. There is also a list of cancer center on the web site that you could chose form.
I will be honest as far as diet goes….I would let him eat whatever and not worry so much about the rules especially if he losing weight….if it sounds good then let him have it. My husband at one point dropped from 100 kg to 72 kg. It was ugly. I used a lot of protein shakes. I made them with frozen fruit, ice cream, vanilla yogurt, protein powder and milk. He got tired of them but his weight got back to over 100 kg eventually. Other things that work is Carnation Instant Breakfast. Or just using dry powdered milk in things like soups, mashed potatoes, cereals as added protein and calories without the fats.
Hope this helps. Good luck and keep us posted.KrisV
You are absolutely right Darla, when you have seen and been through the worst there really is nothing left to fear. The one day at a time has double meaning too. I take each day as it comes and try not to worry about tomorrow. Also live today. And live all those things that you said you really should do. That is what I am going to start doing.
KrisV
Dear ibnaggy
Welcome to the best little family that no one every wants to be a part of. You find that we are all good support and that we will try to answer questions that you have.
It is good that your dad was able to have surgery, even with the positive margins. Surgery is really the best thing. Having chemo and radiation are great ways to make sure that those positive margins don’t mean a thing.
Keep us posted.KrisV
Thank you everyone. For my the real grief comes out more as anger than anything. It comes up when I get frustrated with something that Mark would have normally dealt with….like fixing a dripping faucet or putting a new screen door in. I get angry that he left me….and have been known to throw stuff. I know that all I would have to ask and one of the kids would help me but I just don’t want to be dependent on them all the time.
The gal that I see to help me dealt with life (she is a life saver and I have been seeing her off and on for many years) has me reading a book about grief and loss and I really like it. He talks about loss being a wilderness and that we have to journey through it. We can get lost in it and then find our way, we may take and easy path or a hard windy path. Eventually thought we come out the other side and we are a different person for the journey. I like that analogy of it. Because I know some that really have gotten lost in it and others that just chugged through.Again thanks everyone.
KrisVElizabeth –
I know the feeling. I wish I had found this site in the very beginning. We just kind of lucked along with everyone. It was crazy really because we went less than three weeks from diagnosis to his resection. I barely had time to think let alone do anything but basic research. I know it wouldn’t have changed anything but still too crazy.
The only doc we had an issue with up there was one GI doc who came in the first time be husband dealt with his sepsis and basically told us what we were going to do. When we asked questions and wanted to know the why’s about doing an ERCP and a stent he got really pissed and stomped out of the room. In hindsight we were absolutely right to do what we did.
Other than that I love the staff at Virginia Mason. I spent a total of 45 nights there with either my husband or our youngest son (thyroid cancer) in 2013 and April of this year. They were so good to me along with my husband.
Good luck and keeping my fingers crossed for you both.KrisV
Elaine – best of luck to you with your resection. Keeping my fingers and everything else crossed for you.
KrisV
Brenda –
I am so happy to hear that all is good. I love hearing that kind of news and I bet you both do too.KrisV
Izabella –
I haven’t not really dealt with that but I do know that after awhile chemo may lose it’s effectiveness but that does not necessarily mean that it won’t work at all. It many still slow tumor growth. The goal with that type of therapy would be to buy some more time. And I always say time can be the answer…..you never know tomorrow may hold the answer.
I would ask these questions to your doctor and see what he has to say? I would also ask if this was your loved one what would you do? Asking that question usually gets you a pretty truthful answer.KrisV
Dearest Carol –
Welcome to the best family no one really wants to be a part of. It’s one of the unfortunate things with this cancer that it has very little symptoms until the later stages. My husband was 3b when diagnosed with no real symptoms until he turned yellow but that was it. Only turned yellow.
follow the links that Lainy gave you and you will definitely be on good track for getting a start on this disease. When they do the ERCP they will most likely place a stent – metal or plastic – each which have there own sets of problems but you will have to wade through. Biggest is monitoring for infection. It is a possibility that you will have a brushing done for a biopsy but often these biopsies are false negative so take whatever they tell you with a grain of salt.
The other thing that we suggest a lot is second third or even fourth opinions. And make sure you have docs that have dealt with many cases of CC. This is such a rare disease that not all docs see it with any regularity. You want to look at a major cancer center and you can find a list of quite a few of those on this website.
Good luck and keep us posted on how you do.KrisV
Katia –
Welcome the best little family no one really wants to be a part of. We are here for any questions might have. As a nurse nausea, feelings of fullness and needing to gait weight is something I see a lot.
For my husband we did protein shakes. My husband did not have a lot of issues with eating fats so for your dad you might want to switch it up a little. For his shakes we used frozen fruit then added whey protein powder, ice cream (may use a low fat option) then yogurt (again low fat) and then milk (use rice milk for something like that. Blend it up and drink away. Also you can add dry powdered milk to things like soups, mashed potatoes and just about anything. I does not have fat in it so it works well without causing digestive problems. You also can make Jello which has some protein and then instead of cold water use a Clear Ensure (it’s a high protein drink that is not milk based) and let it set, that doubles the protein in the jello…..and it’s considered fluids at the same time. Then I would make sure that he eats, small meals more often.Hope this helps and so glad that your father can have surgery. That is such a good thing. Good luck.
KrisV
Garrett –
Welcome to the best little family no one really wants to be a part of. Sounds like you have really done your research on this disease and have a good plan for yourself mapped out. And definitely getting more opinions is the way to go.
And as has been said don’t think about those months…..we have people on here that I am sure at one time were given time frames and I know of a couple who have been around for a really long time. The best words to here if you are inoperable is Stable Disease and there are many who get told that time and time again.
I do suggest that you make sure you have all your affairs in order…..that sounds terribly depressing but I know from my own personal experience that it never hurts to make sure.Keeps us posted on your progress.
KrisV
Elizabeth –
Sorry to jump in late but I have had a busy few days. However welcome to the family.Second opinion, especially on surgery is a definite. My husband was told by the first surgeon and GI doc that he was inoperable. We traveled to Seattle and went to see the people there. I would suggest:
Surgeon – Dr Flavio Rocha – he is a hepatobiliary surgeon and he is wonderful. I think a less surgeon would have closed him up and said no way…..as it was Dr Rocha spent 14 hours in surgery and got clean margins on the second try. He was always receptive to any questions or concerns we had. Also he trained at Memorial Sloan Kettering with one of their top surgeons.
Then I would suggest for oncology Dr Vincent Piccozzi – the man is wonderful and he is so compassionate. He was always on the phone with us and every treatment he stuck his head in and said at least Hi. When my husband got so sick from one chemo he was always calling to check on us. They are also tied in with Seattle Cancer Care Alliance which expands all the treatment options.
There were others including Dr Yao who was the radiation oncologist and Dr Baliga the infections disease doc and Dr Larson who was our GI doc.
Wonderful people and so compassionate. Unfortunately my husband’s came back rather abruptly and he has just a few days after it was confirmed but they bought us two more years.
As for the bilirubin…..lots of fluids as this will help keep things flushing through Peter’s system. Eating a well balanced diet which sounds like you already are. Maybe getting stents changed or even an external drain may help….Mark’s got to 15 or 16 at one time and they did an external drain which brought it down to 7 until after surgery.
Hope this helps and if you have questions please feel free to email me.KrisV
