kvolland
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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
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
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.
KrisVWelcome 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
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,
KrisVJanet –
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
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.
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
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
