ashley

HI Donna,
Welcome to the site. Sorry to hear about your husband’s condition. On the brighter side, my experience with what I have read with this disease leads me to believe that resection is usually a more likely option with a distal tumor, vs. a Klatskin tumor, so that is good news. I don’t see any replies as far as doctors in your area, but there is a new doctor directory set up on the site that should help you.
The stents that my mother keeps having are plastic and need replacement via ERCP every 8 weeks. Plenty of infections which ultimately ended up with her having to have 4 hours of intraveneous IV DAILY for the last 9 weeks prior to any chemo treatment even starting.

Have you been told if the tumor is resectable? it would be called a Whipple surgery and many members on this site can speak about it.
Keep us posted and good luck. Remember that it is not uncommon to get several opinions on this disease.
Ashley

Hi Caroline
Welcome, and sorry to hear about your brother in law. I’m sure you will find lots of answers to any questions you have – there are plenty of folks on this board ready to help.

I’m just wondering if your brother in law has gotten a second opinion? Has he been told his CC is not resectable ( and why)? Or is there talk of possible resection after treatment? What type of tumor does he have
(Klatskin/distal area) and it is contained at this point? I think the most important thing is to make sure you are at a hospital with doctors very familiar with this and if not push the second opinion.

Please provide us with more information so we can try to help you. there are numerous chemo treatments for this cancer – my mother just finished two weeks of 5-FU with radiation. There may also be clinical trials you can look into http://www.clinicaltrials.gov.

Hope to hear back from you.
Ashley
Niantic, CT

Hi Adam,
I can feel your frustration. I would be upset if they had to re-do the stent for the biopsy also. What’s interesting is that a CA 19-9 over 100 is generally a pretty good indicator of cancer, esp. if it is in the thousands. It’s the brushings that are only 25% effective. And if they send the brushings out for FISH staining the percentage comes up closer to 50% Medicare paid for all of my mother’s testing, so is CT medicare different than NJ? Not sure.
Please ask again about the CA 19-9 – as it is just a simple blood test, and much less expensive than an ERCP and biopsy/brushing.
Maybe your dad could use a second opinion? I see you are in NJ.. are you near Sloan or Mt. Sinai? Maybe a treatment like microspheres would work?

I hope you get some solid answers soon.
Keep us posted.
Ashley

Mel and Kris,

Your discussion on tumor names reminds me of an article I just read in our Sunday paper about an Ovarian cancer survivor:

A week later, she had surgery to remove a 17-centimeter tumor, which she dubbed

Good News!!
My mother Joan heard on Friday that Blue Cross WILL cover her live donor transplant due to CC!!!
A small relief given the list of items she is dealing with.
To reiterate, Medicare does NOT cover transplants for CC. She was lucky to have a FULL second policy ( not a supplemental one) that has finally determined they will pick up the bill.

She just finished 4 days of chemo/radiation with minimal side effects so far. She is definitely tired but she is happy that is her only side effect at this point in time. She has an 5-FU pump on for 21 days straight with it being refilled every 7 days.. so a very low dose. Radiation is twice a day with 6 hours in between treaments. Brachytherapy is scheduled for 10/26. A robot directed by the doctor will place the iridium beads into her bile duct near the tumor. I assume the ERCP is done beforehand by the doc then the ‘robot’ takes over for the radiation side of this. We still need more info on exactly how this will work but it looks to be a 2 day process. Her stents will also be changed during this procedure.

Thanks for listening and thanks for eveyone’s support. We’re taking this one day at a time…
Ashley

hello.
My mom is 66 and is starting 5 FU tomorrow. 21 days straight with a pump around her waist. she is being told it is a very slow dose and that most of her side effects can be treated with other meds. I’m assuming her dose will be much smaller than your father’s if he is only going once a week. I recall a posting the other day with a severe reaction to this chemo. we’ll just have to wait and see and take this one day at a time.. just like every day with this disease! I’m glad your dad is trying – he sounds like a fighter!
Please keep us posted
ashley

Judy,
Way to go for standing up to your doctor and telling him how it was going to be!! I’m glad you are a fighter and that you are back on a treatment plan.
Stay strong!
Ashley

Sandy,
Glad to hear today was a better day and I hope you get good news tomorrow.
Ashley