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I, too, find many posts upsetting, but I also know the mortality rate, while still horrendous, is better than 2 years ago when I found this site. When I was diagnosed, it hit me like a ton of bricks that I might not live to see my 50th birthday. By the way, I turn 50 in June and I have no intentions of going anywhere for a few more years at least. I am coming up on my 2 year anniversary of hearing the word cholangiocarcinoma for the first time, and my initial searches all pretty much said I was done. I’m still here and still “not sick!”
While it s extremely upsetting to read some of these posts, I find it encouraging to know the mortality rate has dropped so much in 2 years, and I hope and pray that within the next couple of years yet more breakthroughs are found and the mortality rate percentages change to survivor percentages!
I will agree that adding to the title saying a post has sensitive material may have merit. But then I think that I often click on a post that says “my mom” or something as “mundane” and end up crying like a baby over someone’s post.
It’s a hard decision to make, and I often skip posts when the title sounds like I would get far too upset. Then again, I read most of the medical links pertaining to me, no matter what, for any new information I might glean from the new research.
Sorry if this is disjointed. I’m trying to be cohesive, but don’t seem to know if I am making sense.

When I had the pump installed, they had to keep me in the hospital an extra few days because my fever kept spiking around 9 pm. I would be fine all morning, then around 5pm or so it would elevate a little and around 9 I would get a headache and they would check my temp to find it had spiked to 101. This continued for about 2 weeks after they finally released me. No one could figure out why. I don’t worry about it much when it happens anymore unless it gets over 102.
I haven’t had this in a while, tho.
I hope she is able to get transferred to NYP so she can get the surgery… Hopefully on schedule or maybe Dr. Kato can move her date back just a few days until the fever is under control.
Good luck and keep us informed.

Susan:
My thoughts are with you and your husband. I watched a webinar today from Mass General for patients with intrahepatic cc. It will use gem/CID and possibly proton beam radiation. You may want to look into it. The info will be on here as cc.org hosted the webinar.
I have never been told what be I have, so I will have to ask. And I have already had stereotactic radiation thru Sloan so I don’t know if I would be a candidate anyway, but it’s worth a look.
Did any of the doctors suggest radiation?
Good luck with your search, and keep us all informed, as we all care. This is a wonderful support group.

I’m sorry to hear that Jayne. You or the docs will find something else I am sure. Just keep the faith and be proactive!
I’m probably not proactive enough, but I’m not sick on the outside so I’m torn between kicking it when it’s down and possibly having worse consequences or riding the good times out until I need to do something. It’s a hard decision to make…
I also have a caringbridge account. I couldn’t handle the 40+ emails all the time, so if they wanna know, they gotta go there! I also post brief messages on Facebook.
God bless,

Hi:
Sorry you had to find us this way. I was diagnosed 2 years ago with stage 4a. The mets for me were to lymph nodes. The main tumor is in the liver. I also had no symptoms but my CA19-9 was over 80 (can’t quite remember what). Bilirubin was 0.7 or so.
I did receive gem/ox. My suggestions are to make sure he has a scarf, warm socks and gloves nearby. There are a few side effects, which he may or may not get. Nausea is one. It can be controlled with meds but I eventually found it easier for me to just give in. I was sick for about 1/2 hour the evening after infusions. Then I was fine.
Almost everyone suffers some amount of neuropathy. Make sure you have room temp drinks, as he will almost definitely not be able to drink anything cold. And a scarf for the cold air… it will hurt his throat. At least for a few days. And gloves help a lot, even when taking food out of the fridge and grocery shopping. I got some stares as my gem/ox treatments were in the summer.
It’s a little bit of a nuisance, but beats the alternative! The tumor and lymph nodes responded well to this cocktail, as I hope his does. Please keep us posted and if you have any questions, feel free to ask me. I believe I’m one of the few here that has actually had this cocktail. My email is kjacobson8@yahoo.com.
By the way, just to make you feel better… I’m still not “sick”. I’ve never been jaundiced. I have had my share of “sick days” and had a couple of stints in the hospital for various reasons, but we are keeping cc at bay.

Lanny: I never met your wonderful Cindy, but she was so special. She encouraged so many of us, and I loved seeing her posts of her grandchildren.
I am so glad to have had her in my life, as it was, and I pray that time will heal your wounds and you always remember the wonderful life you had with such a special lady.
Hugs to you and your family,

Sue: I don’t know how I missed this! I literally broke down crying reading your great news!!