1

(1 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

2

(9 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

3

(4 replies, posted in Introductions!)

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

4

(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

8

(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

10

(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

12

(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

18

(18 replies, posted in General Discussion)

I didn't have too many issues with it. Of course, I drew Mark's blood myself since it was time to flush the port anyway and we aren't seeing the Onc until September. I was glad I had read about some of the problems people were having because I hadn't look all the way into the box.
I didn't have any issues with the pickup. No one even asked what was in. I called the number and they just came to my work and picked it up.
I could see where there could be problems though if you don't understand how the lab system works with orders and billing and all that stuff.

KrisV

Pyderman -
Fecal impaction is very tough to deal with but it can be. We see it a lot with chronic pain medications use. I would almost guarantee the pain meds caused this and once she gets the impaction gone then she should probably take something routine to keep it from happening again. I am with Gavin that Lactulose works quite well and may be just then thing right now. Another trick we use is warmed prune juice with a dose of Milk Of Magnesia (not sure if they would can it the same over there)......we call it a brown cow....you may ask about it to get her going.
My husband has a terrible time with constipation since his surgery and the fact that he takes chronic low dose pain meds for his arthritis. He takes 250mg of stool softener twice daily and then a total of four 8.6 mg Senokot divided into two doses. Then he also found a black cherry and apply juice that helps too.
But definitely stay ahead of it rather than trying to play catch up but don't stop the pain medications even though that seems to be the right thing....you want her comfortable and the impaction will clear.

KrisV

Have fun Lainy and let us know how it went.

KrisV

Oh Lainy that was too good. I could just see it and that would be exactly how I am.....some of it is being a nurse and our humor runs a little black anyway. My kids asked me once what I wanted done and I said I didn't care since I was dead and it didn't matter.

I have passed that humor on to me kids too....some may not find this next very funny but I did and still do. My youngest son's dad passed away about 2 years ago from alcohol related problems and left none of his wishes know. I vaguely remember from many years ago that he wanted to be cremated so I told my son that was what I thought. We were waiting for the funeral home to show up with the coroner and sheriff's deputy still there (he died at home unplanned so it was a circus) as we were discussing this. I asked my son what he wanted to do with dad's ashes and he absolutely dead-pan tells me he is going to take them to the little Minute Mart where his dad bought all his booze and flush him down the toilet hoping that he clogs it up. I though the sheriff was going to need CPR after that. Black humor but also tongue in cheek because my son had tried really hard to get the Minute Mary to not sell to his dad alcohol when he would come in obviously intoxicated. We ended up having his dad placed in the crypt with his mother, my son's grandmother.

So yes you cloud see where I would find that so very funny.

KrisV

22

(9 replies, posted in General Discussion)

Dearest Sharon -
Glad that you found us here and that you come bearing good news....successful resection is the best you can here. And to answer your question you can be cancer free. My husband was diagnosed in May 2013 with extrahepatic cc (Klatskin's tumor) and had a resection in June 2013, second set of margins were clear but he had a positive lymph node so he was stage IIIb and a year later he is cancer-free. He had 6 months of adjuvant chemo Gemcitiabine/Oxaliplatin and a two month break then 6 weeks of chemo and radiation (5-FU and IMRT) His last scan in June were clear and the doc expects them to stay that way.

That being said it was not without it ups and downs. 14 hours of surgery, 4 hospitalizations total, weight loss of over 80# all together, having to do IV fluids at home. Was it worth it? Yes I believe it was for him.

Everyone has the chemo to not chemo question. I am sure other will answer but it is a frequent question on here. If you go to the heading you will find a search tab and in that you can search specific topics such as this.

Good luck and keep us posted.

KrisV

Well that certainly sounds good to me. I know I have dealt with esophagitis and gastris both during all the stress of my husband's cancer. I spent four days in the hospital sure I was having a heart attack.....just stress and inflammation. I think in your case it my be good to get a definitive answer so that you can get rid of the what-if worry. I will continue to send positive thoughts your way.

KrisV

24

(4 replies, posted in Pain Management)

While I have not done this myself I know of people who have had success with both chronic and acute pain. I believe it would be worth a try and it certainly won't hurt anything.

On this topic, is your husband on any oral pain medications and if so what is he taking? And please tell us a little more about what he has and where he is being treated. We may have even more information for you.

KrisV

25

(3 replies, posted in Pain Management)

jtaylor -
So glad Deleware joined in with the rest of us...of course I live in Washington state so we have gone on beyond that. To answer you question, there really is no answer. I would try to find a reputable dispensary locally and talk to someone about different strains and how much to start with. I know there are oils available and then can be added to food or drinks. There is also a cream that can be applied to the inner arm. I talked to a local dispensary about my husband (although he refused to use) and they were full of information. I will also tap a friend of mine how understands this and see what he has to say.

KrisV