dukenukem
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Not sure if the Conference is the right place to ask this, but …
There is a wealth of information out there and new info is coming out almost daily (thanks Gavin) from studies and trials. What is/can be done to coordinate this info to focus/prioritize new research? Resources are limited, so we have to work smarter, not harder. We have to minimize duplication of efforts and continue to open new doors. (“To boldly go where no one has gone before.” Sorry – once a Trekkie, always a Trekkie.) Pharmas are looking for payback. That’s fair, since they are not non-profit organizations. But they have to be factored into the big picture.
Duke
Two of my sons went with me to my chemo in December. The idea was to show them what it was all about and that the chemo was not a big deal. They saw that but also saw a little bit about what cancer was. We did not talk about it but I think it brought it home, maybe a little harder than I had thought would happen. I did not scare them, which is good. But this is a drop in the bucket compared to what you and your sister are going through. My heart goes out to you. I’m sure your Dad is glad you are there and takes comfort from your presence.
Duke
What does it mean when it says “Designated as a safety issue – yes.”?
Unfortunately, this, like many trials, excludes those who have already had some form of chemo.
Duke
As a patient this is one thing I have wrestled with. I will want to know so that I can compose myself. As for spending my last days in hospice or at home, I am still undecided. Being at home in familiar surroundings will bring comfort, assuming I am still lucid. But I don’t want a room to be known as “That’s where Dad died.” My sister cared for my father when he died at her house. And she cared for her husband when he died at home. Not something I feel comfortable asking her about.
All you can do is make the decisions that feel right at the time and never look back. My thoughts and prayers are with you and your dad.
Duke
Try to do at least one fun thing every day. Go for a walk, talk with a friend, watch a silly movie, go to the ocean, walk a beach, watch the Ducks whup Ohio State next Monday.
Duke
Lainy
As long as the rest of the noodles are in the form of a casserole accompanied by chicken soup, my door is always open to you.
Duke
Lainy –
Look at a particularly amorous one and say, soulfully, “You’re teeth are as bright as stars, and I bet them come out at night, too.”
Duke
It’s tough having to be so careful, almost hermit-like. But I understand about not being around sick people or getting chilled or cutting myself, even something as simple as opening a can of cat food or a letter cut. Doesn’t have to be as obvious as a knife.
Thanks for caring. It’s important to me.
Duke
I like the prime number concept. I’m two years away from the next one – I’ll take it.
Curiosity question. How closely did the CT/PET scan results match the ultrasound?
You have to have a plan, a goal. If not, you might drift aimlessly. One of the oft-repeated phrases here is “Attitude is everything.” (Subtitled “The Little Engine That Could – I think I can, I think I can.”) Surgery is the only cure. Keep asking your team – When, not If – surgery is practical.
Duke
Marion
It doesn’t look like Dr. Roongruedee Chaiteerakij or anyone from Dr. Lewis Roberts’ group is going to make a presentation on what they have learned from the information many of us provided. In fact, I have heard nothing since the one webinar. What are their plans for the future release of any info?Duke
Questions.
Were the two samples (which gave the 15 and 65 CA19-9) measured on the same machine or at the same facility? If not, there may be some differences based on that.Were all other parameters in their normal range for you?
Comment.
CA19-9 is not a 100% indicator. If it were, initial diagnoses would be a snap. Even the Geico gecko could do it. Other things can affect it. My guess is that your onc will have you get a retest in two weeks.Until then, try the best you can to remain calm.
Duke
Just saw this and thought I would add my history.
I live in northeast Ohio and am being treated at the Seidman Cancer Center in Mentor, Ohio. It is a joint venture of the Lake Hospital System (local) and the University Hospitals of Cleveland, Ohio.
Their experience is limited. I was told (finally) that they have treated four patients in the last three years. They seem to follow standard protocols but lack experience and imagination, especially as things continue to degrade. Do not confuse effort and empathy with knowledge and results.
On the good side, I saw Dr. Steven Alberts at the Mayo Clinic in Rochester, Mn for a consult on treatment. I was impressed by him but it is not practical to see him as my oncologist.
The main reason for this post was to bring it up into the “queue” so that others could contribute current information.
Duke
There is so much coming out so quickly from so many groups, who is sitting back and trying to pull it all together into a coherent picture? Or trying to combine study results to come up with more focused studies? Probably too big for one organization, but could be divided into ICC, ECC, and distal among Mayo, MDA, MSK, and others. Lots of opportunities for institutions in the UK and elsewhere.
Duke
Take a look at this recent link.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12250
Duke
