kvolland
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Oh Lainy – can I come to your house please? Mine is so crazy right now with the husband, the daughter and the grandson, not to say they aren’t the loves of my life but quiet?! not really sure what that is anymore. And my dinner was a bowl of ice cream….sshh don’t tell anyone.
KrisV
Well Ceci and Lainy,
I guess this is my Saturday night date too. My fault too. First Saturday I have had to work in two years and I am too tired to go out. My husband wanted to but I didn’t.
The port is the one that is planted under the skin. As a nurse I like it better because when you are not using it then it is just under the skin and doesn’t interfere with anything. You can shower like normal and it’s just there. However it is under the skin and requires a small poke to access it. If the poke is painful then they can numb the skin first. Placing it is a simple outpatient procedure for most people. The biggest risk factor (with it and most anything that is implanted) is an increased risk of infection. That is why my husband’s is out.
I believe that our tiff1496 had a transplant and here is a link to her story. It is very inspiring to read.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10780
Keep us posted and I think I may be a little addicted to being here. It does help me get through what we (my husband and I) are going through and focus less on us and more on others. He refuses to even look at the site right now although he does listen to my stories.
KrisV
And Lainy I hoped that you were feeling soooo much better with all this. I keep my fingers crossed for you and keep you in my prayers.
Ceci –
Welcome to the best family no one really wants to be a part of and so sorry you had to join us. My husband was diagnosed in May with CC. We are now halfway through his chemo….doing the midway scan next Friday. So far chemo has not been a problem for us.
Some of the prep for the chemo depends on whether your daughter has a port or not. If the has a port for chemo then I wouldn’t worry too much about the getting things started. If she does not have a port and they are going to have to start an IV I would suggest making sure she is well hydrated prior to chemo and no caffeine prior to getting the IV started. We had a lot of trouble after my husband had his port pulled with getting an IV started so that is our routine.
Also they should give her nausea medications to take after the chemo. My husband has Zofran (ondansetron), Dexamethasone and Prochlorperazine along with Lorazepam. He was given instructions to take the Zofran and Dexamethasone twice daily for two days and the others as needed although they recommend that he take the prochlorperazine every 6 hours which he does. No nausea with this plus they give him plenty of stuff prior to chemo.
Good luck and keep us posted.
KrisVThere are several different protein powders and the like you can use. My husband lost 40# after surgery and we had a terrible time with his protein levels.
There is Ensure Clear which comes in Peach Mango and Berry Pomegranate and it’s not too bad, a little sweet for me. There is also Glucerna which is designed for diabetics but we found it to be a little easier for him to drink. Carnation Instant Breakfast may work.
The big thing we did was got to GNC (local health food store but it’s a chain so you may have one close or try online). They had a bunch of different protein powders that you can try. We did cookies and cream and then Unflavored powders. We used the unflavored in lots of different things like in mashed potatoes, cottage cheese, yogurt, soups, etc.
We also made protein shakes for him every night. Frozen fruit, couple of scoops of ice cream, scoop of protein powder then add milk and blend in the blender until about the right consistency. You can add any flavors or fruit or skip it and add fresh fruit or peanut butter….you get the idea.
Also make sure every calories counts by staying away from “junk foods.” We even bough protein bars and snacks that were high in protein to help.
Frequent smaller meals through out the day can help to.That’s all I can think of right now. You may see if you can access a dietitian to help with specific goals and recommendations.
KrisV
LadyLinden –
I am with everyone else as this is such a personal decision for you and you are the only one that can make that decision. After my husband had his resection we were given the choice of chemo vs no-chemo since they think they got it all with the surgery. We talked about it a lot and my husband’s decision was that the would do it as long as he could handle the ot. He said that if the side effects got too bad then he would quit. We are now halfway through it and other than the occasional night sweats and the cold sensitivity, he is doing pretty good. NO nausea, no weight loss, moderate fatigue but he is still working full time. He is on Gemzar/Oxaliplantin which is not exactly the same as what you would be taking.
We have had a few bad days where he is crabby and telling me he doesn’t want to do it anymore but then the next dose rolls around and he is fine with it. I guess it’s just another roller coaster.
What I will say is that EVERYONE reacts differently to chemo and to every dose of chemo. What my husband had or anyone else had may or may not be what you have.
What every decision you make will be the right one for you.KrisV
Marion –
I did know. It was interesting to listen to. He is a really great guy with a great sense of humor which came in handy more than once. I did learn not to hug a surgeon right after a 14 hour surgery. There’s a reason they keep the OR’s so cold. What I liked about him really though was he never assumed that just because I was a nurse that I understood everything that was going on but after surgery when we got home, I called a lot and we were able to keep Mark out of the ER several times because he trusted me enough to have me do things for him that normally he wouldn’t ask people to do. I have nothing but great things to say about him.KrisV
Hello there – Welcome aboard the roller coaster for CC. My husband was diagnosed in May with Klatskin’s tumor with lymph node involvement – one that was very close to the tumor was positive. We had the resection on June 4th and while it was a 14 hour surgery I can say we are doing well now (there are some good days and bad days) and on chemo to hopefully kill any cells that may be left. We had our surgery at Virginia Mason in Seattle by Dr Flavio Rocha and are continuing our treatment with Dr Vincent Picozzi at Virginia Mason. I have to say that I love both of them. Dr Rocha did a Roun-en-Y with a liver resection with removed 7 lymph nodes total with only the one positive.
I did not know much about CC before this (despite being a nurse) and did not join the website until after surgery but I would not change who we had do everything. Of course financially for us we could not have afforded to go anywhere else even if we wanted to so I am glad we got lucky.
I am sure you will have more chime in on great places to go and those that would be willing to give it a try. Dr Rocha told us before surgery that he would only NOT do/finish the surgery if he found distant nodes positive or any other metastasis int other words significantly advanced disease.Keep us posted and certainly ask any questions.
KrisV
Good one Gavin. I can print it out and use it to explain why we aren’t doing specific things for Mark that people it out lives expect to be done….such as why we aren’t using specific nausea meds when he is only at a low-moderate risk for nausea and why no PET scans since he has technically had had his first line treatment (surgery).
Thanks.
Glad you didn’t get blown away by the storm.KrisV
Milena –
I have dealt with them a little through my work and very rarely does anyone complain about pain with them so I would definitely reach out to the doc because as had been said it could not be in the wrong spot and need adjusted. And it does seem frustrating that they can’t drain more but if they take too much it can cause dehydration and other problems. I am sorry that it didn’t work out correctly right off. I suspect that if they get it right it will make all the difference.
My husband had a little but of ascites before surgery and after….the hard part was after they pulled the surgical drain he drained his ascites out of that. For several days he drained almost 2 liters of fluid a day out that little hole. I finally put an ostomy appliance on it to contain it. All the ascites went away after that….I guess we had our own drain.
Hang in there. Keep after your doctor.KrisV
Sam –
I would suggest if nausea is big problem then you may talk to the doc about something other than pills to help with it. There is a patch called Scopalamine that is used for sea sickness for a lot of people and it can work for intractable nausea. It is small and usually put on behind the ear. There are other oral meds that can work too….just ask the doc and keep asking…..I always say the squeaky wheel gets greased.
I am sorry she had changed so suddenly but I agree with Lainy she probably had a goal in her head to make it to that reunion and used up so much energy for that.
Remember to talk to her. Even if you think she can’t hear you she can and will take comfort that you are there.
My prayers are with you.KrisV
Christine –
So sorry for the loss of your mom. I am glad that you were able to be there for in the end and even thought you may not realize it, she knew you were there and found comfort in that.You and your mom will be in my prayers.
KrisV
Definitely sounds like things are headed in the right direction. The bilirubin at .4 is awesome along with the tumor markers going down. Time for the up side of this roller coaster for a while. And a great time to celebrate all the good things!
KrisV
So glad to hear things are going better. Sounds like they got the meds right….and that you got a good night’s sleep. That is more important than anything. It’s kind of funny but when things were really bad this summer trying to deal with my husband’s cancer/surgery and my son’s cancer/surgery I had no trouble sleeping at all. I hit the bed at night and crashed. Now that things have slowed down….my son is cancer free now and off to college and things are doing okay with my husband, I am having a terrible time sleeping. I finally broke down and asked my doc for something. It’s helped somewhat.
I have been very lucky this summer having an adult daughter at home so she could care for the animals and take care of whoever wasn’t in the hospital. She has been a big help. It’s a two hour drive for us to get to the hospital where both of them have their treatment.
Keep hanging in there and it is so good that he is doing better and that the antibiotics are working.
KrisV
You have really been through a lot with yours. My husband was diagnosed in May with his CC. I honestly can’t tell you the stage because I never really wanted to know. We are currently halfway through Gemzar/Oxipliplatin for his. We do the scan in two weeks to see what progress. He had pretty bad cold sensitivity to the Ox so we understand that. He is currently drinking warm water and wearing gloves everywhere. He’s about roasting me out of the house turning the heat up and I am still wearing shorts and t-shirts.
You sound like your in-laws might be related to mine so I feel you pain with that. They have butted in and caused me so much more stress. I can’t seem to get it through his mom and sisters’ heads that he really is sick. His mom just thinking that he should “just get over it.” Then calling him all the time to ask for help doing things he shouldn’t be doing. I don’t think any of them realize that this will probably kill him…..so she just wants to work him into the ground.As for the negativity of the website….I did see that a little in the beginning. It seemed depressing but a couple of things I can point out.
#1 check out the thread of Milestone posted by people. There are plenty out there who are living with this as if a disease no different than diabetes or heart diseasehttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8883
#2 Clear back in nursing school I was having a really hard time dealing with being in the nursing home and all the “old people” I only saw as waiting to die. It tore me up. I had a nursing instructor pull me aside and tell me that there is positive in anything all you have to do is look. I know it’s hard when you are dealing with something like this but that is what I try to do.
I have also found that by sharing my problems, some have gone before me and have good advice. We can also share our experiences so that others can learn.
Thoughts and prayers going your way.
KrisV
