jean
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Glen
I think that’s a very complex question and I don’t know if anyone really will have an answer to that. I would certainly start with your oncologists and perhaps a second opinion from an oncologist that has not been involved in your care. Anyway, just a thought!
The very good news is that they’re not finding any evidence of HC or CC and that is such very good news!!!
I did have a question after reading your post, was the biopsy that was found to be negative from the one they did for the clinical trial or a second reading on the biopsy from 12/07? I’m just curious. In any case, you’ve been given very good news and we always very much appreciate good news around here!
Wishing you all the best!
Jean
Marion….that does make me feel better. Very hard numbers to read though, but I think you’re right. We are each of us unique and not a number.
Thanks so much!
Jean
Carol
I double checked about this online though probably best to check with his oncologist! Ativan is not metabolized in the liver so you don’t need to adjust the dosage for liver dysfunction. But, Ambien IS metabolized in the liver so the dosage does need to be lowered when there is liver dysfunction.
I wish I had some ideas about his cough. Bronchitis, fluid in or around the lungs? Enough guessing! I think it’s best you’re checking with his oncologist. They might want to get an x-ray and get him a good cough suppressant. That might help his sleep!
Wishing you both the very best!
Jean
It does seem like a very good article…but the statistics given certainly didn’t cheer up my evening! It says that in 2007 there will be an estimated 5510 cases of intrahepatic CC in woman with a mortality of 5500. I have never read such poor statistics for survival. I know it includes those who are unable to have resection (I think that was 90%), but VERY depressing numbers!!!
Jean
Lulu
Thanks for sharing all of this information! The article on freeze dried black raspberries is really interesting. I really like the Science Daily site and get their weekly updates, but missed this one. Where do you find it…online or is it available in stores?
I hope your husband is doing well…sounds as if you’re taking very good care of him! Wishing you both all of the best.
Jean
Patty Kay
I’m not familiar with the side effects of the procedure but do know that steroids alone can seriously effect ones sleep, even though your sister is on a taper of the dosage. Some people find sleeping medications helpful to counter this problem. I know others here have had the procedure and am sure will let you know their experiences.
Welcome! I think you’ll find this to be a wonderfully supportive group of people who are always willing to share their knowledge and experiences. I’ve certainly found that to be the case.
Wishing all the best to your sister and much success with the treatment!
Jean
Lisa
I really wish that I had a clear answer to this myself! Having had no chemo after my resection in May, I do always wonder if I should have done so. And I still just don’t know the answer. I too read all of the research I can find and I just don’t find a clear answer to this. Many of the studies are based on very small numbers or aren’t double blind or valid retrospective studies. Or they study too broad of range of subjects, making them not very applicable to any of them.
I think it all just points to the need for really good studies to be done on CC, involving multiple medical centers, and the studies then replicated. Of course, this involves a lot of money and I’m sure the drug companies don’t think that the bottom line, involving so few patients, justifies their funding. And all of this means that we need fundraising to support this research.
For every person it really is a decision based on risk versus benefit, and that is certainly on many different levels. Suppressing the immune system, as when chemo is given, certainly doesn’t come without risk.
I wish so much that I knew the answer to this! I know that I made the best decision for myself that I could at the time and don’t honestly know if I would do differently if I had it to do over again. I just don’t know!
A very good topic to bring up Lisa…it’s something many of us have or will struggle with.
Jean
Rhonda
Welcome! This is a great place for finding information and sharing experiences…I think you’ll find a lot of helpful information and support. I’m sorry to hear about your mom, but glad that she’s feeling well despite all she’s been going through. And you’re right, every one’s experience is so different with this kind of cancer. Are you in Australia as well? I think you’ll find that there are always others here who are going through or have already gone through very similar situations to yours. And sometimes it just helps to write about what you’re going through and know that people here really do understand. I think you’ll find a really great group of people here!
Wishing all the best to you and your mom.
Jean
Charlene
I am so sorry to hear about the loss of your beloved John. It sounds as if your struggle has been long and very difficult…I know you are grateful that he is no longer suffering and in pain. Sending thoughts and prayers for comfort and peace in this difficult time.
Jean
It is SO wonderful to hear your good news…it is what gives us all hope! I am so happy for you and your family. Keep the good news coming!
Jean
I too am so sorry to hear the news about your brother…your family has certainly been through so much. Sending prayers and positive thoughts for good news about your brother.
Jean
Jeff
I know many people who have had that procedure with great success, it really has relieved their pain. So, I’m wishing the same success for you tomorrow. We will all be waiting anxiously to hear!
All my positive thoughts and prayers for healing going your way.
Jean
Kristin
You asked about Cyberknife. It’s a type of radiation that is very targeted and enables larger doses of radiation to be given to the tumor while sparing the surrounding tissue. Gold seeds are normally implanted around the area to be treated and the Cyberknife machine is able to track them and make adjustments during the actual treatment. It’s a relatively new technology and is widely available in this country. If you “google” Cyberknife you’ll find their website and it is very informative.
Jean
Kristin
I really know what you mean about having to step away from the computer because it was getting too depressing. I had first posted here prior to my surgery on May 21st…it then took me until August 5th to post again (I just checked!). Reading anything on this site made me SO frightened…SO afraid. I always have to remind myself that we are all different, that no other person’s experience is my experience. And even regarding statistics, which I posted about earlier, none of us are statistics…we are not numbers. They can give one an idea of prognosis but they are not our prognosis. Anyway, I very much understand what you are saying.
Speaking of statistics…since posting yesterday I have spent a lot of time searching numbers. I was set on finding some “better” numbers for all of us here. I found a study out of Japan in the “World Journal of Surgery” from October 2008. It was a retrospective study of 56 consecutive patients who had surgical resection. The 5 year survival was 100% stage I, 67% stage II, and 37% stage III. Boy, I sure wish I was in that stageI!!!!
I did want to mention two books that I have found very helpful in maintaining my hope. As Lainy said, there is always hope…and I truly believe that. One is “Happiness in a Storm” by Wendy Schlessel Harpham, MD and the other is “Anti Cancer: A New Way of Life” by David Servan-Schreiber, MD. They both share their personal experiences in battling cancer in which a poor prognosis was given. I found them inspiring, informative and comforting.
You asked about anyone surviving 20+ years…I did post recently about a good friend of a physician that I know here in Seattle. She was diagnosed with unresectable CC 20 years ago (biopsy proven), has been on chemo regimes the past 10 years for metastatic disease. But, is doing well and leading a normal life…and that wasn’t even resected! And I think Marion posted about a number of people that she knew of who were long term survivors.
Kristin, I am hoping for all the best for you, your dad, and your family. I know it’s such a difficult time….I know how frightening it is.
Jean
I know everyone comes to this with a different perspective, but the one thing I know is that there IS hope…hope that it will not reoccur…hope that new therapies will be found…I do believe that.
I just quickly pulled up an article: Journal of American College of Surgeons, Volume 7, Issue 4, October 2008. It includes a review of the literature on Intrahepatic Cholangiocarcinoma. This quote deals with surgical resection only and not chemotherapy, but I was responding more to the comment that CC always “comes back”.
“Currently, surgical resection of the involved liver segments is the only curative treatment for ICC, but because most patients present at an advanced stage, resectability rates have been quite variable (18% to 70%). Surgery has been successful in the few reported series, with 1-year survival after surgical resection reported as 35% to 86%, 3-year survival as 20% to 51.8%, and 5-year survival as 20.5% to 40%….”. These numbers reflect surgical resection in all stages.
I know I have read many articles regarding this with many statistics and the numbers are not great, but I do know that there is hope. And that is what I wanted to say…there IS hope.
Wishing all the best to everyone here!
Jean
