pcl1029
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Hi, Eli and everyone,
As both a patient and in the medical field and saw my sis-in-law passed away during the last 5 days of her life with CCA ; talking to her and her husband about treatment from diagnosis to the passage to heaven;,from hospital to hospice care. I can truly understand from both sides of the coin about this disease and saw the limit of what the current medical advance can do for this disease, including clinical trial) .In short it is not that much. I don’t blame the caregiver and I, as a patient, will not encourage it either but should give a clear direction to the caregiver about her/his wishes in the event that the time has come.
Either you are a patient or a caregiver, we have to know about how little we can do,and we have to accept what the outcome will be after trying our best to research,to seek, and make the best judgement base on the findings . In doing so, we we will have no regret. But if we just sit and wait for the ” magic bullet” to come, I am sure it will not arrive sooner that you expected.
I am currently research on the criteria for using “Natural history” of patients as an entry point to speed up the drug development and I will make a list to post on the board ,and when it comes out, please fill it out . This what Marion mentioned before, it is proposed by NIH/FDA and will be accepted as one of the pathway to get patient input and influence for new drug development on efficacy and drug adverse action. And this is one of the way all of you can participate.
Thanks in advance.
God bless.Hi,everyone,
Thanks for allof your compliment. As I mentioned before, we all become ONE ENTITY, one voice and united in one spirit for finding a cure for all of us,patients as well as caregivers, so we will never be suffer again. That is the only purpose for me to join this board voluntarily without reservation.The road ahead is rough and long ; it requires the collaboration of the researchers of the academia,the pharmaceutical companies,the regulatory agents , investors and patient advocates to work together ,using the most uptodate methods and equipment to increase the effectiveness of finding new drugs,improving the efficacy and decreasing the adverse drug reactions of the new drugs ; and therefore shorten the time to get new drugs on the market . As you know ,COLLABORATION is not easy. We may not get there in time to find the cure for all of us who now having this disease and relieve the emotional sufferings for both patients and caregivers. But it is a start anyway toward the right direction. That means we,the patients and caregivers, have to work harder, ,raising more funds,doing more research,organize better,and increase the awareness of this disease to anyone you know . Compare to the cystic fibrosis foundation’s research and organizational development, we still have a lot of catch up to do.
But for my part,I will try my best as long as my energy level up to the challenge.
God bless.Hi,
About side effects of radioembo, please see below.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8626
But please be aware that these patients also have been on chemotherapy at the same time when radioembo were performed.
God bless.
Hi,
This is the doctor who talked about the Y90 in plain English that layman can understand. He is considered one of the top doctor in this field around the world,therefore experiences count a lot.
If you read what he said carefully, you will understand how he feels about this procedure when things was not going his way . He is not just want to perform the Y 90 procedure only; he is chasing and trying to improve the utility of this procedure for better results for liver and other tumors. And that is the difference of hearts among medical professionals.http://www.io.northwestern.edu/patient-stories/doug-of-round-lake-beach-illinois/
God bless.
Hi,
Diarrhea is the side effect of both 5FU and oxaliplatin.
Diarrhea can be watery, or can be solid little pieces,or slurry like .
As long as less than or equal to 4 times a day and follow doctor instruction to take Imodium to control the situation, it will be fine. Make sure hydration is adequate and if diarrhea occur more than 4 times per day, seek MD advice is highly recommended.
God bless.Hi,
BTW, I stopped taking multivitamin pills after my second resection in June 2010.
One reason is that ,most of them contain folic acid and if someone like me who is on capecitabine(Xeloda) or injectable like 5 FU, it may not be a good idea.
God bless.Hi,
If I were you, I will get a 2nd opinion by another oncologist. I know drugs are expensive nowadays, but 10k a pill will be too high even including mark up by drug store, hospital,or by doctors’ office if they will dispense to patient. .BTW do you know the name of that drug that will cost 10k? The way that you mentioned about your doctor really will make me twice likely to have a second opinion if I were you.
God bless.Hi,Marion,
I totally agree on this statement;- “the emerging, overall consensus is for individual, clinical and psychological evaluation of the elderly patient.”
God bless.
Hi,
If I were you, I will get a second opinion from an interventional radiologist from John Hopkins to see whether chemoembolization or radioembo will be an option if no mets to other parts of the body . If your HCC-CCA ( mixed type) tumors only confined in the liver,side effects of chemoembo or radioembolization will be much easier to tolerate . Otherwise systemic chemotherapy recommended by your oncologist will be the logical choice.
I may disappoint you in that being a CCA patient for 40 months and continuing doing research on this cancer, there is no such thing at this moment can be referred to as ” Magic bullet” for our kind of cancer.
; there is also no such thing as ” the best chemo regimen” for CCA.
I donot qualify to answer The last two questions since I am not a doctor, that will be one of the questions you should ask your doctor.
For a list of regimens, please go to the experience forum on this web site, and you will find under ” systemic chemotherapy in general for cholangiocarcinoma “
God bless.Hi,
I know you will find info. From this link for some of your questions.
Remember , this is for references only, the doc will decide which one is the best for the patient, but you can ask him/her the regimen in your mind for comparison.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843
God bless.
Hi,
I am sorry,I did not have any experience on those drugs together. I do know its pharmacological use though.
May be other members can help with their EXPERIENCES.
God bless.Hi,
Thanks Lainy,
BTW, check out this link with regard to where in the world , which country has the highest stats and the lowest stats.
But as many of you know, stat is just statistics .http://www.amepc.org/tgc/article/view/74/64
If the article is too much and too details for you, just scroll down a bit, and click at the map ,this will give you an overall idea where is in the world the CCA comes from.
God bless.
