Derin -
No side effects that we have noticed. He's been on it for a year and a half.  Side effects listed are things like GI upset, diarrhea, constipation and changes in taste. Think that Mark is on a low dose because I have see some of my patients on a lot higher doses. But I don't think I have every seen anyone with side effects.

Hope it helps.

KrisV

I agree with Marion. It's actually quite disgusting when doctors are like that. There is no reason for it either but still so many of the old school that think they are gods. I am so glad we only ran into it once while we were going through Mark's stuff.....a GI do that I refused to see after that one encounter. It was obvious he didn't like the fact that we were educated and asked questions he didn't want to answer.
Patients aren't really patients any more, they are consumers and need to research their care just as they would anything else they purchase. Knowledge is power. The internet is a wonderful tool also to gain that needed information.
Pooh on that doctor.

KrisV

That's cute. I like it. I am sure I could come up with more.

KrisV

4

(3 replies, posted in Members' Cafe)

But you know as a nurse myself, those are the people you remember....the ones that make you laugh or cry but I will be that those nurses laughed good at your antics Duke and yours too Julie.
The last knee surgery I had was one surgery too many in a 6 week period and they had not sedated my or given me anything before I went to the OR. My doc got a little sidetracked and finally told one of the nurses if they didn't give me the good stuff to knock me out I was going to get up and walk out.....next thing I remember is waking up in recovery. Guess it worked.

KrisV

5

(13 replies, posted in Members' Cafe)

Well, just as an aside to the sloppy joe conversation.....and yes, I think we will have them for dinner tonight.....thanks for the great idea.....you all have forgotten about the Seahawks again. I will have to say they will stir things up a bit, especially now that they remembered it is football season. smile

KrisV

Derin -
We have had a little trouble with narrowing of the bile ducts but so far managed to dodge any procedures, stent placements or anything. The only symptom my husband would have was an elevated temperature so off to the hospital we would do. Sepsis was the diagnosis. On MRI they thought there was narrowing (the GI doc) but our surgeon said no. He was hospitalized three times for this and then it stopped.
Mark lost all of his left lob of his liver and a good portion of his right. According to the GI doc we saw he has multiple connection spots from his bile ducts in his liver to the stump of the intestine and that only one appears narrowed. We took a watch and wait approach because we knew any messing around with the bile ducts...dilation, stents, etc would increase the risk of infection. Why replace one problem with another was our question?
Consequently they put Mark on Ursodial 100 mg twice a day and since then no problems. And now Mark is afraid to quit taking it even though he has been told he can. I don't blame him and it doesn't seem to be causing any negative effects so no one is pushing.

KrisV

7

(14 replies, posted in General Discussion)

I am with Duke.
Although having been down a similar road with Mark this year it's easier said than done. His Ca-19-9 went up drastically in September which scared both of us.....maybe even me more. Our Onc had us come back in two months to redo the scan and lab work. In November it was not normal but was half of what it had been so no worries.
I wound try really hard to just put the information and worry in a drawer then lock it up and throw away the key. Dig into holiday prep and try to forget it.

Hang in there,
KrisV

Serena -
I know it doesn't probably help much but I know your mother is not the first person I have heard of that they are never able to find the primary cancer. As a nurse I have dealt with a lot of cancer patients over the years and have worked with a few that have mets but no primary found. Everyone usually scratches there head.
What I will tell you is that one oncologist I met theorized that not being able to find the primary meant that they body itself had fought off the cancer by itself but not before it metastasized to another part of the body. He had absolutely nothing to back that up with but it sounded good to me.

KrisV

Golden Girl -
As everyone else has said welcome to the site. And believe me I know what aggressive is when it comes to this cancer and truly that is the way you need to be. I am sure there were those that thought I was but no one ever said to me but I ma sure they thought it. My husband's oncologist told him that I was the only reason he survived his treatment. It's been a long haul for sure.
As for the cancer cholangiocarcinoma is the cancer and adenocarcinoma is the type cells it grows from. Adenocarcinoma means that is is arising from glandular cells in the body....like those lining the bile ducts. My husband was also adenocarcinoma. His was a Klatskin's tumor or perihilar CC. His was treated with surgery then chemo then finally chemoradiation.
It is good that your mother has you to be such a good advocate.

KrisV

We were originally told scans every three months for the first two years....two years started at surgery date but we have shaken things up.....with Marks Ca19-9 being up in September we went in at 2 months. Since every thing was good in November we went back to three months. Out Onc decided that Mark's cancer has been so easily monitored with the labs, we are just going to do labs and a chest x-ray in February. The option will be to do a CT scan if the labs are elevated or hinky in any way at all. He wants to do scan every 6 months going out from here and labs every 3 months. It will limit the radiation exposure.
I feel pretty comfortable with that as long as we keep an eye on it.

KrisV

We figure Mark had it about 5+ years before diagnosis. That is going off of the "gallbaldder" symptoms that he had off and on for those 5 years.....Right upper quadrant pain (pretty significant) with burping, bloating and occasional chest pain. He went to the doc 2 1/2 years before diagnosis and had a negative ultrasound and never had the HIDA scan.
Unfortunately there are a lot of things we could blame in on for my husband. He has a family h/o colon cancer and multiple other cancers (prostate, skin, uterine and lung) all in 1 degree relatives. He has a h/o Hodgkin's lymphoma and the cc was located at the edge of the radiation field for that. He also lived "downstream" from an apple orchard then golf course growing up....think 60's and 70's with pesticide and other things. Then he worked for years as a machinist exposed to solvents and metals.
Then he is diabetic (from the previous radiation) and has taken a variety of medications for this including oral meds and insulin. I know that the elevated liver enzymes were ignored for years as they are a side effect of several of the drugs. He was over weight about 50# and started on statins for cholesterol. He also spent several years as  a volunteer firefighter which who knows what he was exposed to fighting fires.
The only things he didn't do was smoke....never never but was exposed to second hand. And he has never traveled outside the US.
I can't think of any specific stressor that might have happened around the time the cancer would have started growing. We had four kids at home and the time so there was always stress but nothing out of the normal.

Duke, I think it's great you are trying to gather all the information you can. Someday some one will figure something out.

KrisV

Vickie -
I read through all your posts and the way I see your scans is a win, maybe not in the war but this battle. No growth is great, now of course shrinkage is the best but no growth is great too.
Sounds like the fatigue and nausea have been issues but are better now. My husband did 12 doses of Gem/Ox over 6 months and he said it was never the same with each infusion. We always prepared for the worst and did the WooHoo fist pump if it was good. The other medication that can be used for nausea as a last resort but it does work is Lorazepam which is an anti-anxiety drug but it will help with nausea. My husband would take the prochlorperazine first then the Zofran (ondansetron) and finally the lorazepam. He was never given Emend so I can't say anything about that. Also he made syre he took the steroid as this will reduce the incidence of nausea.
Fatigue was always an issues. And I always say just let your body be your guide. If you are tired then rest, take a nap if you need to. Remember that if you have a really good day you may pay for it the next by being more tired. My husband is kind of a couch potato so he was happy with kicking back.
Hair loss in all this was my problem....stress caused my hair to fall out in clumps up until a few months ago. I ended up having to have it cut from mid-back to above my shoulders to hide it. My husband only lost some of his facial hair when he did the chemo plus radiation. But from my nursing experience, I know everyone reacts differently. Often times it can grown back in differently such as curly when it was straight, darker colored (especially if it was graying) or even a different color.

Hope things are still going well.

KrisV

Julie -
Congrats on a BOY! I wanted my daughter to have a girl.....just like her but she got a boy....just like her. Plus we have our 4 wonderful additions belonging to our oldest son....three girls and a boy so I really have fun with Christmas this year.

You will get to have all kinds fun in the planning and arrival.

KrisV

14

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

Lisa,
Sounds like I wasn't the only one that MIA lately. Glad you are back too. I was like you and so sad that there were so many new people but glad that they had found us.

KrisV

Thank yous Lisa, I love saying.

KrisV

Suzanne -
Everyone has welcomed you and I would like to belatedly add mine. Your husband's story sounds a lot like my husband's. He just turned 51 in August and is now 17 months cancer-free.
He did do 6 months of traditional chemo (Gemzar and Oxaliplatin) every 2 weeks then a few weeks off and then 5 weeks of IMRT (radiation) with the 5FU continuous infusion. The radiation with chemo was really hard on him with a lot of weight loss and tons of symptoms. However he did really well with the Gem/Ox with only some cold sensitivity.
This disease makes every decision a struggle. We talked long and hard about each step but Mark wanted to do everything he possible could to make sure that it never came back. We have grandchildren now and he wants to be able to take them fishing and play that role now.....we are empty nesters finally. And we have decided that this is our new "normal" whatever normal is anyway and despite all of it try very hard not to let us change anything....some days are better than others but the new "normal" is livable so far.

Good luck and keep us posted.
KrisV

17

(7 replies, posted in Introductions!)

Welcome Christian -
So sorry that you had to find us but you will be glad you did. It does sound like your family might be related to mine.....my husband was diagnosed with CC at the same time our youngest son was diagnosed with thyroid cancer. It definitely throws you off.

Hopefully we can provide you with some support and ideas that will be helpful for you and your family. Just remember we are here and even if you need to just vent we can help with that too.

KrisV

Shelley -
With my husband it mostly a lack of motivation and just lack of joy in anything that made me worry about him. He was not the most active before this but it got to the point where he was either in his chair or bed and that was it. I felt like he was just turning into a piece of furniture. His anxiety has mostly been related to things like coming up scans, another dose of chemo or a procedure he is getting ready for. But I do think that most people who go through something like this develop something VERY similar to PTSD and it's related to feeling like there is something always hanging over your head. My husband is usually a pretty positive person but this he describes as just waiting for the other shoe to drop. He worries that ever sniffle, ache, burp or anything is a symptom of the cancer's return. Living on edge like that can cause some long term effects similar to PTSD. It is better for my husband with the meds. It may also be needing to talk to someone, a social worker or someone can recommend someone that has dealings with cancer survivors.

KrisV

Shelley -
Welcome to the family. Your father went through the same thing my husband did. The fancy name is Roux-en-Y which is similar to a Whipple. At this point his liver has regrown to what it was prior to surgery at least weight-wise, it will never look the same. It usually takes about 6 weeks to regrow and during that time fatigue can be an issue.
One of the things that I noticed with my husband is that depression and at times tension (anxiety) were big issues. I had his doctor start him on a low dose anti-depressant and that helped tremendously for him. He is currently taking 10 mg of Celexa and then he has an as needed dose of lorazepam 0.5 mg as needed for anxiety which is very, very rarely takes.
My suggestion would be to have you father keep a really really good diary for several weeks and include in it all the foods he eats, his activity levels, blood sugars and weight. Then also write down when he has an episode  - how long it is, how he felt and anything that goes with it. You may be able to see a pattern with a food or something else. Make sure he checks his blood sugar and his blood pressure each time he has an episode.
Also if he hasn't had a check up with a cardiologist you might have them give him a good once over. This has been a rough year on him and it might be time to make sure the stress of all this has not brought something else to the surface.
Hope this helps some and be sure to keep us all posted.

KrisV

20

(2 replies, posted in Members' Cafe)

I have to share this somewhere since I have been forbidden to share on Facebook. And I think it is terribly funny even thought Mark doesn't always think so.

He had his scan on Monday the 7th in Seattle which is pretty much a two hour drive from our house. I have done ALL the driving for the last 17 months not only for his treatment but our son's treatment. He is always complaining about my driving telling people I scare him to death and that he is surprised I haven't killed us. I always reply that I haven't killed us or anyone else and haven't gotten a ticket given my lead foot.

This time he had to drive since I am taking stuff for my back and can't drive. He was obviously in a good mood after getting the good news but his lead foot is way worse. We were less the a third of the way home and he got upset by one of those drives in the fast lane doing less than the speed limit to passed him. And lo and behold there was a very nice State Trooper sitting on the edge of the road. He pulled us over.

I was laughing so hard that I couldn't even find the Registration for the car. I handed the poor Trooper the proof of insurance which he didn't want then an expired registration before I found the right one. The poor guy though I had lost my mind. He came back with a very nicely written ticket for Mark for speeding. I had to stop laughing long enough to tell the poor guy why I was laughing. He just looked at Mark and said "So sorry, Dude." Then we were on our way.

I just snicker every time I think of it. I drove for 15,000 miles up there for the last year and a half with no ticket, no accident, no problems and the first time he drives, he gets a ticket. I guess it's a good thing he has a good sense of humor about stuff like this. Oh and I paid the ticket since I thought it was all to priceless.

KrisV

21

(10 replies, posted in General Discussion)

Julie -
Remember I am not even the one having the scans and I have horrible scan anxiety. Mark just laughs (some at me and some just to laugh) and tells me to remember that what will happen will happen whether I worry about it or not. I wish I could be as calm as he is. But we have made it though 17 months now (hard to believe). It does seem to get a little easier. So deep breath and keep pushing through it. Concentrate on those good things you have in life.

Hugs,
KrisV

Janet -
Welcome to the best group. This is a tough road and you will be glad to have the support of everyone here.
My husband had  Roux-en-Y procedure which is similar to a Whipple but does not involve the pancreas. I understand about the craziness of surgery and the Murphy's Law that surrounds it. He had a lot of complications and a lot of hospitalizations too. The good news is that he is now 17 months out from surgery and is still cancer free.
Hand in there as best you can and remember you can ask any thing here. There is no question that we would not try to answer.

KrisV

23

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

Sorry for the lengthy absence but things have been crazy, crazy lately.

First off for the good news. We did a two month follow up on Mark. Two months ago his Ca 19-9 was 117 and everyone was worried about a return of the cancer in September especially given his increased in tiredness and some other concerns. I am happy to announce that his Ca 19-9 is now down to 69 coupled with totally clear scans and perfect lab work they are saying we only have to come back in three months for labs with no scans. As long as the Ca 19-9 is going down we will just monitor labs with a CT scan twice a year or so unless something changes. His weight is up finally to what a deem healthy and after two months of Physical Therapy he is getting around and dong more.....right now plotting his Christmas lights that overwhelm our yard come the day after Thanksgiving.

I have been working a lot of hours at work which has cut into my free time significantly, mostly to the point where i come home eat dinner and collapse. Mark finally got tired of all that so back to the doctor I went. Seems I don't get enough sunshine (even when it does sunshine) which made me laugh since I live in Washington and it's raining right now. I was severely deficient in my Vit D which apparently affects my energy levels. So now a daily high dose Vit D and a change in anti-depressant....also learning to say NO at work and mean it and I am feeling better.

Of course, then I go and herniate a disc  my back at work so I am now able to spend some time on other things such as visiting all my friend on here. I do PT three times a week and take it easy. i would like to say Mark is taking care of me but not so much.

Thank you everyone for you patience in me over these few months.

Love you all,
KrisV

Hi All -
I know I have been absent off here for awhile. Things have just been crazy between work and dealing with all the other things.

We were at the doc today.....3 month check up....It was mixed news. His tumor marker - CA 19-9 - was elevated but his CT scan and Chest x-ray were both clear. ONC is not super worried since it's not really high. It's 115 today and was at a high of 999 at time of diagnosis. It has bounced all over the place during treatment so he's not worried. We are going to back in two months rather than three to check everything again. If the numbers trend up then he will look more for some sort or metastasis.

My only concern was that he has been so tired, even more so than when he was going through treatment. He works then comes home and sleeps then sleeps most of the weekend. He's even napping at work on his lunch. So not like him so I have been working close to 60 hours a week....that's not helped either....plus doing all the house stuff. So I am beat. His blood counts were all good, no anemia and liver functions were great. So we see his primary doc soon and have thyroid function tests done. I don't think that's been done since he started all this. If that's not it then we are going to look at a different anti-depressant. He just finished 8 weeks of physical therapy so he is stronger....just sleeps a lot.

So I am calling it good news. There is no definitive cancer so that's good news.

I will try to be a little more present, although I do often read what is posted, I just didn't feel like i had a lot to say most of the time.

Love,
KrisV

Julie -
Seems like you just can't win. You need to remember that it's not a race to see if you can have every side effect that the chemo produces. smile

Technically Mark missed two of his twelve doses of Oxaliplatin when we were doing just chemo. He had anaphylaxsis 15 minutes into his 10th dose so they stopped and then infused dose 11 really slow and he did fine but 15 minutes into the last one he got into trouble again. They offered us two doses of cisplantin to make up for it and he opted not to. Felt like almost 12 was good enough.

You just have to decide if the possible good effects out weight the know bad effects of the chemo. I know you will make the best decision for you.

KrisV