need advice from the hive mind
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Holly,
Loads of prayers heading your way that Y-90 works. They are coming out with more and more new treatments lately. Maybe one will be good for you.
On another note… I never say “my cancer”. It has invaded my body but is not welcomed and I refuse to claim it!Good luck, dear Holly. Know that the famous tidal wave of good wishes are heading your way
Hugs,
MarionDear Holly good luck on the Y-90 and the best news is that there are still options available to you. Please let us know when and I am wishing you the very best. Sending big cyber hugs {} {}
Thank you all for the advice and greetings. Going to do another y-90 since chemos don’t work so well on my cancer at this point. I’ll keep you all posted. xoxoxo
Judith….welcome to our site. Although we continue to see HCC and Intrahepatic Cholangiocarcinoma designation they are in fact two distinctly different cancers.
Cholangiocarcinoma is stratified as:
Perihilar – Extrahepatic (Hilar and Klatskin)
Intrahpetatic
Distal
The 100 questions and answers about biliary offers a good overview of this cancer. You may down-load a free copy by using this link:
http://cholangiocarcinoma.org/bookorder-ebook.htmIn comparison to other cancers, Cholangiocarcinoma is considered an “Orphan Cancer” hence it has been difficult to establish support groups. You might want to check with USC, as they have a fairly robust Biliary Department.
This discussion board is comprised of the most loving, kind, and caring individuals who always are ready to lend a hand, support, advise and simply stand by you. All have been touched by this difficult disease. Their combined knowledge and experience is unsurpassed. Please know to reach out to this special group because we are in this together.
Hugs,
MarionHi Judith. I would suggest you post your questions in the introductions section of the board as you may receive more responses. The discussion board tends to be a bit quiet on the weekend but you will hear from many people on Monday, including many famliar with doctors and hospitals in LA. Cholangiocarcinoma and hepatocullar carcinoma are different diseases. There are several different types of cholangiocarcinoma, including hilar. You will receive a great deal of help and support on this board so be sure to post any questions you may have.
Hi I’m a new member because our son was just diagnosed with CC, so I have several questions: is Cholangio carcinoma the same as hepatocellular carcinoma? Hilar carcinoma?Is there a support group for Cholangio in Los Angeles for families? How do we find the best physician practices and programs? Thanks Judith
Holly,
Have you considered chemo-embolization as an alternative to the radioembolization? It is also a liver directed treatment. Johns Hopkins has had good success with this treatment. In fact, before we started on the clinical trial Marion mentioned above, we almost went this path ourselves.
In Lynn’s case, the trial still seemed to have more potential benefit with the inhibitor drug. But we both felt very confident in Johns Hopkins and their work in chemoembolization.
We evaluated both radio and chemo embolization. The doctors at Johns Hopkins were quite confident about tumor reduction with chemoembolization.
I don’t know if you have worked with Johns Hopkins. Based on your location, its possible you may already have been involved with this organization. We came away highly impressed.
Carl
Holly, I cannot advise you on what course to take and I know it sounds trite but listen to your gut, it won’t let you down. Just want to say I think of you and it is good to see your smiling face on here again. Looking forward to hearing what you decide.
Holly, I wish I had an answer for you as to what is the RIGHT choice. I know, it’s hard. Yes, the trial I am on is going well. I do not know if phase 2 is still open.
There are some trials out there. There is also SBRT radiation. I don’t remember your specifics, but it worked to quiet the tumors for 8 or 9 months for me.
There is also a new trial about to begin pertaining to the CD45 protein that coats cells. I don’t know a lot about it, but maybe your onc does?
I hope you get a good, sound plan in place. One that is right for you.Hi holly,
I don’t have any nuggets of wisdom but I’m just dropping in to say hello – good to see you hear:-). I think about you often x
Holly…..it is absolutely thrilling to hear from you. I like to think that having choices is a good thing though, on the other hand, settling for one over the other can be difficult. Have you looked into the clinical trial that our Kris and now our Lynn Scheitrum are participating in:
http://clinicaltrials.gov/show/NCT01285037
and here is some more:
http://www.lillyoncologypipeline.com/Pages/met-inhibitor.aspx
Hoping for others to chime in on this discussion as well.
Hugs,
MarionI have neither written nor responded in months on these boards … time and cancer have a way of eating up your life, as you know. Now I just need advice. In 18 months I have had 4 cycles gem/cis, left lobe re-section (palliative only), y-90 radiation, two speenectomies (to brings platelet counts up), 5 more cycles gem/cis ……. and now, what? Choices are another y-90 (which buys me about 6 months) or a trial with MEK/panopazib …… or something way outside the box I don’t know about yet. Cancer is still only in the liver. so….. what would you all do? And thanks in advance for your wisdom. I’m stumped. ~Holly
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