devoncat

Sounds great Andie.

Good news is a tonic to all.

Kris

It sounds like you are struggling there…and no wonder. You have a lot on your plate and you are only one person. Yes your husband needs you, so do your kids and everything else in “life”. Hang in there. Hopefully the doctors will figure something out soon, but dont judge yourself for wanting this all to stop. No one here is judging you and if we were all being truthful, all of us would admit that we have felt the same way at least once.

Perhaps the best thing you can do is to ask the doctors not to discuss with your husband technical things until you are there. I am sure this is something they deal with regularly. I have been so out of it that I have had complete conversations with doctors and friends in the hospital that I dont remember taking place at all. But do tell your husband you are doing this because he needs to be kept in the loop about what is happening and why some discussions may need to be postponed.

Gemzar can completely make your labs wonky. I dont think most people get through the regime without at least one delay. Maybe they can start again in a week or so.

I know when I am stressed, I shower in the dark. It is the only thing that relaxes me sometimes. Perhaps you can find that something (a bath, a glass of wine, a walk with the dog) that gets you some private time so that you can focus on you. Remember that you are still you, not just a care giver. You have emotions and needs too.

Take care.
Kris

Welcome to the most caring and wonderful site…not to mention the most knowledgable about cc.

OK…diarhea (or however it is spelled!) I had a big problem with that on my first chemo regime. Lots of drugs were needed. It helps to take the drugs BEFORE it starts, not after it comes. Now that you know chemo causes your dad this problem, pop a couple of pills the day before and day of treatment. We all know that vomiting causes dehydration, but dehydration can also cause vomiting. So perhaps your dads diarhea is contributing to the vomiting. With diarhea, I was told to try adding BRATTY to my diet…B(annanas), R(ice),A(pplesauce),T(oast), T(ea) and Y(ogurt). Apparently it is something all new mothers with upset babies know. My doctor also suggested blueberry soup. This is something you can get in the grocery store in Sweden, perhaps plain blueberries would be just as good.

As to the best chemo, no one really knows. Gemzar + cisplatin is standard. However, many people get xeloda + oxaliplatin or some mixture between the two. To my knowledge there have been no studies which of the two regimes work better. You may also want to ask your dads doctor about avastin or other antibodies to work in conjunction with chemo. What antibody is given is often dependent on KRAS status of your dads tumor so they will need a tissue sample.

No growth is great news.

Hang in there.

Kris

Maggie,
Marion is our in the know person here in regards to up to date research. She is completely right about Hong Kong having extensive and up to date research in cc. IF you search cholangiocarcinoma on pubmed, there are several studies and papers coming out of Hong Kong. The authors of these papers and research reports would be a good place to begin to find a cc specialist in your area.

Kris

Mary,
Hope Tom gets out soon. Summer is a terrible time to get sick. In Sweden, the whole country (and I mean whole country) basically shuts down in July and August. Luckily, my oncologists and surgons have to take turns so there is always somebody who knows me and my case at the hospital.

Take care.
Kris

Sounds great Rick. I wish I could get that treatment but my tumors are all out of my liver, but attached to it so I dont have as many treatment options. Hope you feel well for your trip back home.

Kris

Hi Krisi..
Welcome to the board! Not only do we share a name and age group, we share geography. I live in southern Sweden. I think you are on a drug trial that my doctor and I looked into participating in but decided against because of distance (I basically got the same drugs, just not in the trial).

My experience is chemo and antibodies are not shrinking my tumor but holding back some of the growth. I am now 18 months past my reoccurance and everyone is very pleased with how well I am doing, considering I am stage iv. In fact, my doctor used the term “unaffected” in describing my life with cancer and I just got back from a 16 day tour of Germany.

I just had radiation and xeloda and will get scans soon to see if they helped. This treatment plan was based on a small Swedish study called CORGI which included pancreatic and gall bladder cancer patients.

There are several people here who have had great results with chemo, including some that had the tumor shrink enough for surgery. Then there are others like me whose tumors are held somewhat in check with chemo and others who have no response at all. Nobody knows which category they will fall into. I hope you get the best response…SHRINKAGE.

Where are you based in Denmark and which hospital will you be treated at? Did both hospitals look at your charts? I ask because I am in Kalmar and through our system we are connected with Linkoping University hospital. But the cc specialist is in Vaxjo and is connected with Lund and my another doctor sent my records to Gothenburg and Stockholm. And of course, they all had different ideas on how to treat me! If you can, you might want to have the other hospital look just to be sure you are inoperable. Sometimes one doctor is a little more aggressive than another.

Hang in there. You have a lot to fight for.

Kris

Isisman,
sending warm thoughts and tight hugs and prayers for a turn around.

Kris