mustangmort
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Lita,
Welcome to the family. I feel my chest swell with concern and love each time I hear of a new case of CC. I have inoperable intrahepatic CC myself. My first experience with chemo didn’t fare so well either. It did nothing as my tumors continued to grow (although I consider myself blessed at the slow rate they are progressing). Because of the way I reacted to chemo, the docs went right to the interventional radiology route rather than trying different chemos. I had my first chemo embolization 4 weeks ago. The next one was scheduled for next Thursday but I am having a flare up with the ulcerations in my small intestine. Dr. wanted chest/abdomen CT before the embolization but does not want to inject dye while I am having flare up……….so everything will be moved back a while.Just continue to believe and enjoy every tiny experience.
Let Oli know we love him and are pulling for him.
Dianne,
Welcome to this group. We really do feel for you and with you. I am 56 with intrahapatic CC with lymphadenopathy. The folks on this site are so experienced and knowledgeable. It is a real comfort. Please let your husband know that there are lots of people here sending prayers, wishes and sharing his pains and concerns.
Fortunately, my bilirubin has never been abnormal to this point. I had a few weeks where other enzymes spiked a bit, but they headed back down.
Please let us know how he progresses and if there is anything we can do. Again, our prayers are with you and your husband.
Absolutely more hugs and prayers coming your way from out west. Positive thinking and living gives our bodies incredible power to fight things.
Give my best to your brother. He needs to know that there are legions of folks who know about him and are pulling for him.Dr. Sonnenday, how extraordinarily kind of you to chime in here. Thank you for extending a hand to folks in need.
Katheryn, I too know the pain of cholangitis. The pain is very intense, like kidney stones.
Please relay to Patrick my concern but also my love and prayers.
One day at a time………..and he can lick this.People keep asking if I am concerned about my condition. I just smile and reply, “I’m not going anywhere”…………….and I really believe it.
Sorry to all. I forget that in this business, no news is not necessarily good news.
My first chemoembolization went OK. The Dr. told us that he couldn’t get the beads into all areas he wanted to because my previous chemo treatments (I only had 5 treatments of gem/cis) had damaged some of the arteries in my liver. Oh, and by the way, the results of this treatment hurts like a son of a gun. It was just supposed to be an overnight stay, but since they could not control the pain via oral medication, I got to stay an extra day until I could manage the pain.
The chemo beads plug up the arteries leading to the tumors, so they get their blood supply cut off. Your body tends to signal intense pain when tissue gets blood starved.
I just kept telling myself “it’s just the darned tumor tissue dying”.
John, I am patiently waiting for a chance to try the Y90 radioembolization. I have ready quite a bit about it, including some recorded trials at different hospitals. The procedure, and they tell you this, does not cure the disesase, but is quite effective at knocking back and reducing the tumors to buy time. Some have had very very good results with it.
Bkat, I sense that although your dad hurts, he is at peace now with his journey. Quoting from a Beatle’s song (and changing a word)…..”All HE needs is love”………”Love is all HE needs”. Don’t forget the pain meds, though.
I truly feel heavy with feelings for you and your dad and family. God bless you all.
Rachael,
May the Lord’s choicest blessing be with you and your family. May he send comfort and understanding. Lots of prayers being sent your way.
My policy states 1, that anything “experimental or investigational” is not covered.
It also states, 2, that any health product or service whose effectiveness is unproven based on clinical evidence reported in peer-reviewed medical literature” is considered to be experimental or investigational.They claim that this procedure has no “peer reviewed medical literature” supporting its efficacy for treating cholangiocarcinoma. Now, if I had Hepatocellular Carcinoma, it would be a different story.
I guess my original post was asking if anyone knows if there DOES exist any peer reviewed medical literature about the efficacy of Yttrium-90 microspheres and cholangiocarcinoma.
Diana, bless your heart. Welcome to this site. I know what you are going through. Went through myself 6 months ago. My wife remains quite silent about it all most of the time but even she is coming out of her shell somewhat. Just know that there are legions of folks here to chat with and offer whatever comfort and information is needed. Please keep us informed what is going on with your husband.
Lots of prayers and best wishes coming your way.
Micky, I have read an article on pubmed.com that talked about the increased risk of CC for people who have had gall stones/cholangitis etc. I had cholangitis and had gall bladder removed. I also had ulcerative colitis and had my colon removed. Both conditions put me at increased risk for developing CC.
I would use this info (read up on it) and any other information you can find to get at least annual scans. Catching it as early as possible may be an important key. I certainly wish I had caught this a little earlier.Jim, radioembolization is different from RFA. In this procedure they, through the use of a catheter going in through the femoral artery, inject Yttrium-90 coated microspheres into the hepatic artery where they lodge in the blood vessels of the tumors. The tumors then get a high dose of radiation leaving the healthy liver tissue mostly untouched.
It looks like if it is going to take a while to get approval, we will start with chemoembolization………..the same procedure except that the microspheres are coated with chemo (probably gemzar) instead of Yttrium-90. The chemo get confined mostly to the tumors instead of being introduced systemically throughout your body.
