Sounds good Duke. Feels so good to have all those plans lined up. You get a detour instead of a road ends ahead. Might be fun.

KrisV

2

(7 replies, posted in General Discussion)

Thank you everyone. ONC called and spoke with me for a little bit. He is not worried about the numbers being up. The bilirubin is still low....0.4 and it was as high as 13 at one point before surgery. Anyway he said we would do labs and the chest x-ray and see what he finds then decided on the CT. He doesn't want Mark to have the contrast unless he has to so I get that. He tells me to quit being such a worry wort.

PCP upped his thyroid. And he is slowly increasing his insulin....although woke up last night was a low blood sugar so we can't win. I know the blood sugar and cancer aren't related. He's just not taking as good of care as he should....typical man, starts feeling better and thinks he doesn't need to be as careful. He also snacks too much. But I am trying to get him and a couple of his office buddies to walk at lunch.

I restarted therapy this week along with a short course of prednisone. No herniated disc but some some soft tissue issues.....literally sprained by back. And as a Haha funny they discovered I have 6 lumbar vertebra instead of 5.....which is funny too because Mark has 13 thoracic instead of 12. I guess we were meant for each other.

Thank you everyone for you support.

KrisV

3

(9 replies, posted in Introductions!)

Helen -
Welcome to the family  here. It's one you don't really want to belong to but will glad you are. Sounds like you are already a couple plus to the positive with being diagnosed at stage 2 and being able to have surgery so I say WooHoo!
My husband was diagnosed stage 3b and was able to have a resection. He had negative margins on the second section but had a positive lymph node and some extension into nerves and lymph system. He opted to have 6 months of chemo which was 12 doses of Gemcitabine and Oxaliplatin then followed it with 25 doses radiation with continuous 5FU infusion. He wanted to give it every chance to not come back.
And has been said to chemo or not is a personal decision but remember if you start it you can always stop it if the side effects are worse than expected.I don't have any experience with Xeloda but there are plenty that have.
Good luck and keep us posted.

KrisV

4

(2 replies, posted in General Discussion)

I would too Lainy. Why would a doctor not want her patient to have ongoing support and seek advice from those who has gone before.
Good Job!

KrisV

We always add.....in bed....to the end of the fortune cookie in our house. It makes for some good laughs and funny fortunes.

KrisV

Good reading. Mark is having a conversation with his doc about restarting a diabetic med. The doc wants to try one of the newer ones that I am not too hip on him taking. This will give me a little more firepower for this. I know it is a little harder on the liver so that is a drawback.

KrisV

7

(7 replies, posted in General Discussion)

I am a little more worried than I was. Mark went to see his PCP today for is 3 month check for his diabetes....is A1c was up to 9.0 again which is too high. He does admit to not checking his sugars and covering them as well as he should but I knew that. His thyroid was still off so they increased his thyroid.

But his liver enzymes were all elevated above normal. This is the first time that they have been all elevated since before surgery. I am going to fax them to his ONC and make sure we still aren't going to do the CT scan this visit. I guess that's more what I am worried about....NOT doing a CT scan. I wasn't anxious about this until now. UGH! Can't catch a break.

And I am still off work, have been since October....the bane of nursing.....I hurt my back and can't do any lifting, twisting or bending which pretty much kicks my job our for the time being. I guess the good for all this is that it happened at work so that helps. Been doing therapy and steroids to see if that helps....which it hasn't. Next step is injections to see if that relieves the pain.

Now I just am keeping my fingers crossed.

KrisV

Wow, good thing the Coast Guard was there. We watch Deadliest Catch here which is crab fisherman in the Bering Sea and I think the deadlier job is that one that rescues those who are in need. It's amazing.

KrsiV

Again such wonderful pictures, Gavin. Thanks for sharing. I could post some pics but for the most part it is grey and raining.

KrisV

10

(12 replies, posted in Good News / What's Working)

Fire years is awesome. It is such good news to hear that people are surviving this disease. I have been lucky with my husband so far but we are at almost 2 years.

KrisV

Skookumchuck is an Native American word that means Something Good.

12

(9 replies, posted in In Remembrance)

I saw all the condolences on her Facebook page starting a couple days ago. So saddened to see this disease take another wonderful life. From the condolences it was plain to see that she was well loved by all. I didn't ever get a chance to meet her face to face but she did provide some good support when I was at my wit's end with Mark.

KrisV

Karen -
It's always good to know someone from the area. Yes, we did flood in '96 then again really bad again in '07 and '08. Most of Centralia had water in it. Also flooded bad out toward the coast. It was strange to see no traffic on the freeway.

Even in nursing school I found the reason for cancer interesting....of course it's a lot more personal now. I remember I statistic from nursing school that said that something like 50% of all people seen in a Level 1 trauma center develop cancer within 5 years....I don't know if that was the exact stat but it was something that struck me as too high.

I know my husband comes from a family that cancer is rampant. His mother has had lung, colon, uterine, bladder and skin cancer.....yes all primary and she is still 70 years old and kicking. His maternal grandfather died from prostate cancer with mets to the brain and his uncle died from what he thinks was some sort of bone cancer. Plus Mark has had the lymphoma and now the cc. They lives "Down wind and down water" from an apple orchard converted to a gold course......do you think there might be a link? I do.

KrisV

Wow. I did an internet search to see if I could see what they did.....they could have packaged or manufactured almost any supplements. Kind of scary.

KrisV

There is a general belief that certain cancers....maybe all cancers are caused by chronic irritation and inflammation. Look at smokers and their increased risks of certain cancers or people who drink with increased cancers.....the list can go on and on. Now if we could just find the common point for people with. The problem though is the liver deals with all the toxins in our bodies where they are supposed to be there or not and trying to limit it to the one "cause" other than the ones we know of.....liver flukes, PSC and things like hepatitis.

KrisV

16

(22 replies, posted in Members' Cafe)

Love the pics Gavin. Scotland has always been one of those places that I have wanted to see. Had a chance in high school but things didn't work out. One of these days I will make it though.
Beautiful pics.....I love the snow and ice which is so much better than the rain we get....seems that is all we get....with some wind too.

KrisV

17

(5 replies, posted in General Discussion)

Anna-Marie -
I know we have had discussions specific to that. You may want to try using the search button up on the top header. It will give you all pertinent threads. Also look under the Topic of Alternative/Complimentary Medicine and there should be a thread or two under that.

Hope this helps.

KrisV

Frances -
I am so sorry for the loss of your mother. I can relate some from when my father died suddenly a few years ago from a heart attack. It was so stunning and shocking that it just knocked me for a loop. Being the medical professional it seemed like so much stuff got pushed to me to do that I didn't feel I was capable of doing.

What I will say is that you should join a grief counseling group. I know that seems to always be the big push for everything but it will help. Your local hospice or hospital should offer some groups and they are usually open to anyone who has a lost someone - family or friend.

I have always looked toward Elisabeth (Helen)  Kubler-Ross for her 5 stages of grief. It just seems to make sense to me. The stages are: denial, anger, bargaining, depression and acceptance. It is not like you go through those in any set order. You can stay in one for a long time or bounce back and forth between several of them very rapidly. You may even get to acceptance for a bit then bounce into another one. Her book "On Death and Dying" is a helpful read.

And you are always welcome to vent here. We are hear to help.

Hugs.
KrisV

19

(11 replies, posted in General Discussion)

Duke -
Just my thoughts as a healthcare professional. I would say you are right about your mom. Chances are her body was so worn out that her heart just gave up the battle. It unfortunately is what can happen when the body can no longer take the assaults from disease.

As for your question about the palliative surgery......I have no idea. I know darn well they do palliative surgery in other cases....mostly to relieve symptoms such as pain or bowel blockage or other symptoms. I know that one doctor told me years ago they don't like doing it in some situations because it could make the situation worse.....not only with a person who may really be too sick or debilitated to do surgery but the risk of seeding the cancer farther along.....moving it to places that it wasn't before.

I know that it is not "standard" treatment for CC but what is "standard" treatment for CC. You read through people's posts and you know that it's kind of a shotgun approach, although they have narrowed it down to stuff that is effective. I would think that early on resecting as much of the tumor out as possible might get more time as the tumor would have to regrow. And i do believe that some doctors are more willing to take bigger chances than others. As I look back I really think that they didn't expect the good outcome they got on my husband's surgery. And I know for sure if they had know the extent of invasion into the nerves, lymph nodes and blood vessels they probably wouldn't have even tried. BUT we had a doc who opened him up and decided it was his best shot so went for it. We got lucky that it worked so far. And I do mean lucky because so much of this disease is luck - good or bad.

Maybe by asking those questions and pushing for answers a new thought will take hold and give more treatment options. One never knows.

KrisV

Mizzey -
I too like Lainy am glad that you have hospice into help you. Lean heavily on them for any concerns you have. Remember they are there to keep her comfortable. Do not forget to take care of yourself too. As a caregiver you run this risk of burnout and getting sick too. All those people who have said "Call me if there is anything I can do," I suggest calling them and asking them to help even if it's cooking a meal for stopping by the store. Most people truly want to help but don't always know now.
Also take each day as it comes. Try not to worry too much about what tomorrow will hold, it's going to come one way or the other so there is no sense in worrying about it.....it is much easier said that done and if you can completely do it then let me know.
Keep pushing the doctors for answers. If you don't understand what they are telling you then stop them and make them explain it better. Also take a list of questions to the appointments with you so you won't forget what you are going to ask. It is very easy to get flustered and forget what you needed to know.
Also you could push for another opinion. Not sure how that works over there but give it a try. I know we have members on here who have had more than one resection.

Hugs,
KrisV

Mizzey -
Welcome to the best little family ever. It sounds like you have already found the roller coaster ride that this disease can be. I do not know much about intrahepatic as my husband was diagnosed with extrahepatic almost two years ago. There are plenty of resources on the website so wander around and read as much as you can. I also know there are plenty of people who are in the UK on this site so there will be many who will be able to chime in on ways to help.

Also you can go up and use the search button to look for specific topics and posts.

Keep us posted on how your sister is doing. Keeping you and your family in my thoughts.

KrisV

22

(8 replies, posted in General Discussion)

Kris -
If it's any consolation I am gaining weight too......stress makes me eat....and boy you know how stressful things can be. I weigh more than Mark does now which is weird although we can still wear each other's clothes when needed......it's more funny when he wears my jeans to work.

As for the port those things can give grief at times. I have had them where they access fine for months then one day it just doesn't want to work. i usually have people re-position with the arm raised over the head or hung very low on your side. Next time it will probably work just fine. I would make sure they de-clot the line. They push in a small amount of a clot breaking medicine in the tubing, let it sit then draw it out. It usually has to be done periodically with most lines. Our bodies see the line as a foreign object so they try to isolate it from the body forming a fibrin sheath over it. The clot breaker can help get rid of that.

Hopefully it was just on off day today.

KrisV

23

(95 replies, posted in Introductions!)

Matt -
I understand the scanxiety.....my husband doesn't get it very much.....he's more of an optimist where I am more of a realist.....being a nurse I dwell more with the reality of things. He is now almost 2 years post surgery. His first set of scans and labs post chemo-radiation were clean then the next one was clear but his CA 19-9 was elevated for the first time since stopping treatment, all we did was go in a month earlier for labs and scans.....all clear again and the CA 19-9 was closer to normal but not quite. Enough that the ONC was not worried. He has another follow up in February but it will be labs only. Our doc told us that the 2 year mark was the big one......most all of the recurrence happens in two years, not to say that it doesn't come back at other times. Keep putting one foot in front of the other until you get there.

KrisV

24

(11 replies, posted in Introductions!)

Anne-Marie
Along with everyone else I would like to welcome you to the group. We are a greatly positive group of people who will try to answer any question posed. And do not feel that there is a silly or stupid questions.....there are none with this disease. It can be such a roller coaster of up's and down's. My husband is an almost 2 year survivor of this disease. He had his surgery in June of 2013 and in May of 2014 was finally done with all the chemo and radiation treatment. Now it's only anxiety before tests and scans.

Keep us posted.
KrisV

25

(18 replies, posted in Members' Cafe)

Oh boy, I could go on forever about insurance.....it is terrible. I work for a large corporation that is a non-profit Catholic base system. We treat any and all people. Those without insurance get the same care as anyone else. Most often we try to get them covered under Medicaid (state based insurance for low-income) but every once in a while we get those that don't qualify and we write it off.....I took care of a younger gal with colon cancer and they wrote off ALL her care - surgery, chemo, hospital stay, surgeon, home health nurse, all of it....to the tune off close to 1 million dollars. But because she didn't have insurance, her cancer was not caught early as it would have been with some one who had coverage.

Then we have the 2013 year for our family....between Mark's cancer and My son's cancer we had over 1 million dollars in bills for the two of them. I thankfully great insurance through my employer and it only cost us $6,600 dollars. They each had a $3,300 out of pocket maximum. It was met early and then all of our medical care was covered at 100% including my 4 days in the hospital with the chest pain. I feel very lucky to be covered.

One of the things (only one because there are several) that drives cost up is the uninsured people that we have in our country. When people can't pay and their accounts are written off they have to get the money from some where so those of us who can pay or have insurance, pick up the slack. The other thing is that most insurances have a contract with any providers so the medical facility may change $300 for something but the contract says the insurance only has to pay $32 dollars.

The who complicated and convoluted thing drives me nuts.
Glad I have good Insurance.

KrisV