kvolland
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Thank you for all your positive thoughts and prayers this week. I must have worked. He made it four days…..which is awesome and while he was a little bit tired after it, he’s in a much more positive mood.
We see a GI specialist tomorrow as they are still on the hunt for whatever has been causing the sepsis. I think they want to do an ERCP but I am still on the fence about that since his liver functions are all still normal. Surgeon says if there was significant stenosis, those would change. Going to ask lots of questions.KrisV
Dear Anne – Welcome to the family….not that any one really wants to be a part of it but I have always been glad they are here. My husband just turned 50 and was diagnosed in May with Klastkin’s tumor. He had surgery in June and about 60% of his liver was taken and the used part of the small bowel to replace his bile ducts. Once he was all healed (and out of the hospital….we have had multiple stays for blood infections) he has started chemo. He is most likely not a candidate for any radiation since he had radiation treatment already for a previous cancer but we are going chemo….so far he has had three rounds of gemcitabine and oxaliplatin with no real side effects. He had gotten nauseated once and has a little fatigue on Day 2 and 3 but other wise it good.
My biggest suggestion is take the medications that they give you for nausea as instructed. We were given meds that he was required to take for two days then optional meds…..he had taken all the meds and not had an issues.
I agree too that eating smaller more frequent meals will help, concentrate of proteins and easily digestible foods…..softer foods.
Chemo will change your taste so some foods may not be palatable any longer but other may be more.
If you are struggling, have the ONC make a referral to dietician or see if the cancer center has one, they can make a difference.Good Luck and keep us posted.
KrisV
Congratulations Derin. Absolutely wonderful to hear about 2 years and to have a positive scan.
KrisV
If you have a GNC close by they have a really good selection of whey protein powders….with lots of different flavors. My husband really didn’t like the powders but we got him cookies and cream flavor and then unflavored which went into a lot of other things. But there are lots of flavors so maybe you can try a couple different ones.
Hope that helps.KrisV
Dear Jane and DJ
As Lainy said welcome to the best little family no one really wants to be a part of. Your husband’s story sounds exactly like my husbands although more recently on our end. My husband turned yellow the middle of May and on June 4th he had a 14 hours surgery to do the same thing….removed about 60% of his liver, bile ducts, gall bladder along with seven nodes. Margins were clean and only one of the nodes was positive.
We started Gemzar and Oxaliplatin chemo and have had three rounds so far. We are doing one every other week which seems to be okay. He gets tired at times but weight is stable and he’s still eating good. No nausea.
Out biggest problem in the fact that he keeps getting blood infections. He has had three so far with the last one being the first week of September. So far no one has been able to find the source and they are talking about doing an ERCP to look at where his bile ducts meet his intestine.
As far as weight my husband lost 50# after the surgery which he thankfully had to lose. Protein is very important at this point along with just keeping him eating. We did a lot of protein shakes…..frozen fruit, couple of scoops of ice cream, milk, protein powder and yogurt….throw it all in the blender and blend. He drank one big glass every evening and that seemed to help. I am sure that you can substitute around for a vegan diet if needed. Another suggestion might be to see if there is a dietician with the oncologist or see if they can make a referral for him.
The other suggestion I have is to make sure he takes his post chemo meds the way he is supposed to. My husband has a tendency to skip them because he feels good.
I am glad your husband has enough energy to keep going like he does…mine still is having troubles with fatigue from the surgery….I have watched WAY too many old Western reruns right now.
Good luck and keep us posted on your husband’s progress.KrisV
Sorry I opened such a big can of worms on this. I guess I kind of equate all the “cancer cures” out there the same as all the weight loss short cuts on TV right now….if they really worked we would all be a size 2 (tongue in cheek there). I just know what I have seen as the result of them. I do also know that like diabetes (which we deal with in our house too) there is no financial gain for these companies to cure either one of them. It’s kind of darned if you do and darned it you don’t.
But, it’s not me with the cancer and I am not sure how I would be if it was me….
It has been a good and considerate discussion too. I appreciate everyone’s opinions and it’s good to see things from others’ views.KrisV
Good article. People can be so desperate for a cure for themselves or their loved ones that they will try anything…..and no matter the cost. I think there are adjunct therapies that won’t hurt but some of the things I have heart people try can be scary. I took care of a woman with breast cancer once who refused all traditional medicine for her cancer and did every cancer “cure” that she saw online or heard about including the coffee enemas. By the time she decided that it wasn’t working it was miles too late. It was sad to watch and sad to try to help her at the end. I always take things with a grain of salt….if it sounds too good to be true then in probably it.
Just my thoughts!And see Lainy I never knew they did Whipple for bile duct cancer, I thought it was only for Pancreatic cancer….we all learn something new….Mark had the Roux-en-y which is similar to the whipple but doesn’t involve the pancreas. We all learn new things.
I guess I just work with such a great group with our Hospice that I could not imagine anyone having a bad time with it…..I shouldn’t think that way since I know healthcare runs the full gamut for everything. I wish that everyone could have the group that I work with. As with everything in health care ask questions and if you are not comfortable with the answers or how things are going, keep asking questions and looking in different areas. And definitely this is the best place to ask those questions….those that have gone before.
KrisV
Cristerry -Talk to you hospice nurses too. If they are anything like the wonderful ladies that I work with they are always just a phone call away. If anything changes or you think something just doesn’t seem right, call and have them make a visit. And we are always here too.
KrisvV
Sounds like good news to me. WooHoo! Not hopefully your insurance approves the second opinion but it does sound like you have a good plan in place. I know we went right to surgery and are doing chemo afterwards. I know that surgery….or talking about surgery….is always the best. Keep us posted and keeping you in our thoughts and prayers.
KrisV
Michele – I feel your pain. I have the same type of husband….just keeps telling it will be okay and don’t worry. His first symptoms were gallbladder like symptoms and it took me call and tattling to his primary care doc to get the ball rolling on that. When it all came back negative for gall bladder he just shrugged his shoulders and said see. Two weeks later he jaundiced so bad that it looked like someone took a yellow highlighter to him. The kids were shocked and a friend that came to visit was beyond shocked. He still just kept shrugging it off because he felt fine. He wanted to wait from Saturday until Wednesday when we had an appt with the GI doc. I finally fell to female manipulation…..I used tears and guilt (please don’t tell that I did that on purpose) and got him to go to the ER. Of course I had already begun to suspect what was going on because of CT scan a week earlier. Now he still tries to hide his elevated temps from me to keep my from worrying. They just don’t get that we worry more when they don’t talk to us. You may have to work some miracles with this one….he sounds as stubborn as mine. Don’t ever feel guilty if you have to use of tears or manipulation or point blank lies to get what you think is best…..it’s what needs to be done. Good luck tomorrow and hopefully he gets checked out soon.
KrisV
Something that Lainy brought up I would have to agree with…..dealing with all the phone calls and updates as this journey progresses. I would suggest in the very beginning setting up either a spokesperson who you cane give info to and that person can relay it out to everyone. The other option is like a phone tree where you have a list of 4-5 people that you update then they forward the updates on. I was literally going out of my mind trying to keep everyone updated on what was going on. There were people that thought I was purposely leaving them out of the story and not telling everything. I was tired, stressed and not thinking clearly. I think if you set this up early and stick with it everyone will understand…..and if they don’t the drop them out of the loop. I finally set up a tree and had a couple people try to go around it and they stopped getting updates. It might have seemed mean but I was more worried about my stress and my husband’s health. Works with texts, phone calls and emails.
KrisV
Dear Daktoabeann – as everyone else has said, welcome to the family no one wants to be a part of. This is the best site to learn as much as you can about what it and what treatments are viable. It sounds kind of like you husband as hilar CC which is outside the liver but can grow into other structures like the liver. That is what my husband had. They took right at 60% of his liver and then had to resect out part of a vein. He did have a VERY long surgery at 14 hours but there were complications related to a previous surgery. He was lucky that only one localized lymph node came back positive. My husband had a surgery similar to a whipple called a Roux-en-y or hepaticojejunectomy procedure for his. He was ten days in the hospital after surgery but came home and has done well since. Tired as the liver regrew but we have just finished out second round of chemo and he wants to return to work soon. We got lucky that the group we were sent to deals with most all of this type of cancer in our area so we didn’t really have the resources to travel long distance for second and third opinions but I felt very comfortable with what we got.
Hang in there and just keep asking questions. Write the questions down and ask the questions. Make the doctors answer in language you can understand (Sometime they forget we all don’t have medical degrees.)
Keep us posted and Good Luck!
