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

3

(5 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

6

(6 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

9

(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

10

(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

12

(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

Sirena -
Sorry I am getting into this a little late. My husband was diagnosed in May 2013 with Klatskin's tumor. It was only diagnosed after he turned so yellow he looked like someone had colored him with a yellow highlighter, even his eyes. He thankfully has had no itching at all. His bilirubin levels got pretty high just before surgery so they put an external stent in to drain off the bile. To be honest I have no idea if it worked or not since he had complications that landed him in the hospital 48 hours after it was put in. He had surgery 4 days after it was put in then they took it out a month after his surgery.
He has not had a lot of pain with this. He one in awhile had some pain like his gallbladder was going bad but never enough for me to even make him go to the hospital.
One thing that can help breakdown the bilirubin is exposure to sunlight. When we deal with babies that have high bilirubin right after birth we put them in the sunlight to help break it down and lessen the jaundice. We did that some with my husband before his stent. Not sure how much it worked but I am sure it didn't help. Also make sure she is drinking plenty of fluids to help flush it out.
Hope things go well.

KrisV

16

(11 replies, posted in Members' Cafe)

Hahahaha! That is too good. We have had that issues with raccoons in the garden before. They wreck havoc on it. I can't feed the birds anymore because they tear up the feeders so bad. Then I worry about our dog since we have spent so much money on her that if she got tore up by a coon I would pull my hair out.

But sweet corn sounds so good. We get some from the East side of the mountains every year but it's not super available. You are lucky,

KrisV

You go girl, you can do it. I know you can. Just remember that each round is a little different and while this on might be a little rougher, the next one might be even easier. I know Mark felt that way about it.
Something I just thought of too about the dry heaves.....have you tried something like GasX.... which is simethicone. A lot of time dry heaves can be caused by excessive air in the stomach and this might help break it up some. Worth a try if you haven't tried it yet. Glad it doesn't bother you too much though.

Hang in there. You are always in my thoughts.

KrisV

18

(10 replies, posted in Introductions!)

Sam -
It definitely sounds like you have done a great job of getting her the best treatment possible. Keep up the good work and hopefully you will find the perfect one for her.

KrisV

Sis -
I would say jerk face is pretty mild compared to some words I could say and my younger sister....who is the middle sis....has even stronger words that I could never say in polite company. It's okay to vent because we have all been there and vented many times over.

I have been where you are mad.....really mad that my husband has had to through this twice in one lifetime....mad that my 20 year old son had to worry about cancer already....mad about a whole lot. I always felt mad was better though since it doesn't paralyze you the way sadness can. I did the same as Lainy....loud music and the car. I too never got pulled over or ticketed for disturbing the peace (I would if they heard me sing).

We are always here.

KrisV

20

(10 replies, posted in Introductions!)

Sam -
Welcome to our great little family, sorry you had to join us but you will find a great amount of support from everyone. Sounds like you have had your hands full but have been plugging away at it. My biggest question is....have you looked into a second or even third opinion? We are all big advocates of talking to as many people as possible.
Weight loss does seem to go with this. My husband lost about 80# total over the last year. He's starting to gain it back now. Protein is the biggest thing to keep her going. We did a lot of protein shakes with frozen fruit, ice cream, yogurt, protein powder and milk....blend it all up. My husband loved those. Carnation Instant Breakfast works good too along with all of those things like Ensure, Boost, etc. Those work great.
I don;t know a whole lot about clinical trials since we didn't have to go that route. But there will be plenty of people who will chime in that have.

KrisV

Sara -
So sorry for the loss of you sister. Know that she is at peace now and will always be a part of you. Keep yourself and family wrapped in those wonderful memories of her.

KrisV

Jane -
I understand your mom's reluctance to research into the disease....my husband was the same way when he was diagnosed. He let me do all the research, all the talking and all the decisions. If if had not been for me being there I am not sure how things would have turned out. And there were certain things I didn't want to know in the beginning such as what stage he was and what his prognosis could be. Once we got through the worst of it then I asked.

One thing I will add is that there are plenty of people out there who are living with "stable" disease meaning that they still have cancer but through a variety of strategies are living with little or no symptoms.....they are treating this more as a chronic disease rather than what it is.

I would say that having you mom maybe take a tape recorder with her to the MD appt so she can record the conversation or have her put you on speakerphone with a cell may help you hear what is being said, rather than getting it second hand. I know we dis the speakerphone a lot when my husband was in the hospital and I couldn't be there with him.
Good luck and keep us posted.

KrisV

Jane -
Welcome to the family - not one you really want to be but it's the best family. My husband had chemo then chemoradiation but he did have a resection first which appeared to be successful. I would think the goal for your mother might be more in line with shrinking it enough to make the tumor operable. We have had many people who have gone that route.
And I am with Lainy second and third opinions are very important. You really want to make sure that the doctors you are dealing with have seen and treated cc. It may mean traveling to a major cancer center but well worth the extra time and travel.
Keep us posted.

KrisV

Well, I know this is about the cc and Mark but I still have a milestone I want to share.

As many of you know my then 19 year old son was diagnosed with thyroid cancer at the same time Mark was diagnosed with his cc.

My son had his surgery 7-11-13 where they took out 90 lymph nodes in his neck of which 30 were positive for cancer plus his thyroid and part of a blood vessel and some muscle that were affected. He had his one year follow up with his doctor today and he is still CANCER FREE!! I can't believe I get to (or have to) say that about two close people in my life. He saw the endocrinologist that is following him and other than needing to increase his thyroid medication again, he was absolutely fine. Four more clear checks and they will consider him CURED! There's another good word.

Thanks everyone for your positive support and thoughts through this. Love you all.

KrisV

Sis -
Medicare can be quite frustrating and quite often the system works backwards from what it should. Each state is handled differently so what Medicare will pay for in one state is not necessarily what you will get in another. Just as Medicare reimbursement rates are different from state to state.....Medicare actually punishes states that use their Medicare dollars wisely by giving them less money and states that don't manage get more. They also won't pay for a lot of preventative stuff that would save millions of dollars in the long run......an example is a quadraplegic who has an extremely high risk of pressure ulcers, they will not pay for a pressure relieving mattress until the person has bed sores. So let's close the barn door after then horse ran off.
It very frustrating and I battle it every day. One thing I will say though, is if you are denied something because it is not covered in your state then contact your Representatives and Senators, that can sometimes get those rulings changed.

KrisV