October 5, 2008 at 4:21 pm #23240saraMember
These are all great suggestions – thank you very much. We will start working on lining up appropriate experts to be guest speakers.
Kris – I know some nutritionists at the National Cancer Institute (NCI), and I forwarded your question to them. (along with a request for a nutritionist to host a web conference call) They are investigating the issue, and will be in touch soon. I’ll forward the information to you, as well as sharing on the board. At least to me, it appears to make sense that such a reworking of your digestive system may result in gas. Rudy Pena, one of the board members, is also a cholangiocarcinoma survivor. He had the Whipple surgery approximately 10 years ago, and he has had to modify his diet to compensate for what the surgery did to his digestive tract. I will forward you his email address, in case you would like to contact him.October 5, 2008 at 11:41 am #23239darlaParticipant
Information on early symptoms & detection.October 5, 2008 at 1:23 am #23238jayhawkfanMember
I’m newly registered, but have been viewing your site since June when my father was diagnosed. I would really appreciate information from a nutrionist for a webcast. Doctors have such differing points of view when it comes to food and cancer, but none we have talked to are nutritionists. I am interested in what they feel is important and not so important in the diet.October 3, 2008 at 6:25 pm #23237jeffgMember
When and what type of radiation is appropriate for which areas, cyber, gamma, IMRT, 3-D conformal ? Can radition be used same area more than once if lower dosage ? Recommendation on radiaton to liver and lungs ? Combination radiation and chemo? Some oncologist say no. Most common complications of radiation? Is there some type of medicine that can be given via portacath to make radiation more effective? Does radiation actually kill cancer cells in other parts of the body/blood stream from absorbtion while working on a particular tumor. Why do or should oncologist wait or are so conservative with recommending some form of radiation? How many rounds of chemotherapy does it normally take to tell if effective? If using a chemo and tumors are remaining stable it could be the tumor is just being indolent/not progressing and chemo has nothing to do with it is there a way to determine so that chemo does not have to continue and depleting immune system. What’s the lowest and safest level for platlets, red cells and whites before chemo should be with held? Some push to the limit of no return; Is it considered if platlets and r&w cells are depleting chemo is possibally being effective? Simply, standard protocal for chemo to save on the bodies own immune system? Why aren’t genetic profiles completed prior to chemo? Wouldn’t that save time and money and give more specific on which chemo may benefit the patient more so than othe type chemos? What about immunology treatment? Especially for indolent progression? It just appears to be simply trial and error and push the chemo until the body can’t support itself. Why try to be so aggressive? Why when you CC most Oncologist explain all is pallitive treatment? If CC is systemic does it not make sense to keep removing tumors as they appear, especially if it is distant areas and slow progression; wouldn’t it prolong life considerabally for many? Why aren’t anabolic steriods use to help fight cancer? some types are bad for liver but other types aren’t any more dangerous than the chemos. Isn’t it true there is no antidotes for these chemo drugs,once in your system, all that can be done is treat be given pain killers and antacids?
This is a few starters? Basically true or not, where is the common ground/protocal? We are idividuals but basics are basics.
JeffOctober 3, 2008 at 1:21 pm #23236devoncatParticipant
It **literally** came to me in the shower….gas. Perhaps a nice discussion on why, what we can do about it, diet, medicine, etc. Gas affects most of us and despite being embarrassing, it is painful.October 3, 2008 at 11:43 am #23235kristinParticipant
New areas of research in cholangiocarcinoma!
KristinOctober 2, 2008 at 9:15 pm #23234devoncatParticipant
I’ll get back to you…I do my best thinking in the shower so perhaps tomorrow!October 2, 2008 at 5:54 pm #1611saraMember
We would like to begin having regular web-based conferences, and want to be sure we present discussions that would be helpful to the community. We will likely begin with having various medical specialists lead the discussions. To that end, what topics would interest you from the medical community? (doctors, researchers, nurses, nutritionists, etc.)
Once we get a few web conferences under our belt, we will expand our focus outside the medical community. (pharmaceutical, government, etc)
Thank you for this input! Hopefully this will result in helpful and informative discussions.
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