pcl1029
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Hi,Bruce,
Good job and well done.
May I have the % of extra and intrahepatic in your compiled data and the stage of the disease mentioned above.
Thanks.
God bless.Hi,
Common sense tell me that you may need to watch out for the signs of thrombosis more often than not for your dad.(ie: calf pain or swelling of the legs;shortness of breath or pale face;) you can look up other symptoms for DVT,PE and other PVT on the internet.
I ,myself like to be prepared before things happening; You can also ask doctor for additional lab test for your dad’s other clotting factor profile to be just in case.
I did read the articles you have post the links. May I ask what profession you are in. do you really have to pay for the second article you post?
God blessHi, everyone,
In case your are interested, I have just updated my journey of CCA from diagnosis to as current as of March,2013 due to request by member on this message board.
Please also check the link below for the discussion of a related CCA topic.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65176#p65176
God bless.
Hi,
I was told it may taste better by adding honey to the bitter melon juice. But I have never tried to juice it; instead I cook it as a dish with sliced fish or pork and do it quite often.(2 times a week or so.)
God bless.
Hi, Lainy,
Happy mother’s day .
As you know,Gavin and me are the two male moderators on this message board;and Gavin is single I believe; so I am the only male moderator and CCA patient who may see things from a different angle in dealing with the burden of being a patient of a chronic and may be terminal illness and being at the same time a husband of a family of six who I have provided for them financially in the past few decades . Old school of Chinese tradition and culture which I grew up with dictated that a good husband must be a good provider for his family. I notice other cultures have the same scale too in measuring the success of being a husband . This comes first and anything else becomes secondary. It is not romantic but practical. so it is an universal behavior for those who are in the same position as I am .Through this message board,there are not many male patients provide their accounts of the illness as well as joining in for discussions of their thought and feelings. but I can see husbands or fathers who are patients of this illness will share the same feelings and the responsibilities as I am to their families and most of us are just keep our feelings and thoughts inside and try to deal with them internally without affecting the normalcy of the family. yes, it is tough but I am sure that is part of our nature of being husbands and fathers.
God bless.Hi,
Since the info you provided is very limited and therefore I cannot truly recommend anything with sound judgement and lend you a hand.
However, if your husband never shows any fatigue or tiredness before he was diagnosed and all a certain he experienced fatigue and sleep a lot; this may or may not related to the illness. Call the Mayo Clinic and ask what you should do for him. May be he is worry too much about you and the kids and the future financial responsibility for the family ;he may be scare of this illness and do not know what to do;and all of these and more may play a role too.
In my situation, I never spoke to my wife about the seriousness of the surgeries when I had my resections;the side effects of chemotherapy that I had ; I don’t want her to worry about me. I only told my son if the worse case happened to me, what he should do to become “head of the family” and take care of mom and his sisters. My wife is the type of person who is afraid of going to see doctors or entering hospitals. But as all you may know where I make my living in the past few decades. Strange ,isn’t it ?
God bless.God bless
Hi,
I do not know about the benefit of combining diet/hemp oil with chemotherapy therapy.
I do know GEM/CIS will have about 28-33% of chance to shrink the CCA. (partial or complete response to the treatment.)
I regard cholangiocarcinoma is always terminal no matter it is metastasized or not , no matter what stages I am in, even I have a clean PET or CT scan at this time , since there is a 50-75% high recurrence rate. But it does not mean I will be gone soon. I regard CCA as a chronic disease and that is why keeping up to date knowlege about this is important.
Palliative does not mean no hope,but did indicated what the doctor’s judgement and reflection at the time of diagnosis for the “immediate and current state of the disease”.
Therefore the intent for the oncologist to prescribe the GEM/CIS at the time of diagnosis is for palliative;but if the chemotherapy works well, then if the tumors are responding well to treatment; then things will be changed and so will the term of “palliative care”.
read the attached link, that may be an example of hope.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74886#p74886
Good luck and
God bless.Hi, everyone,
Just for information purpose only.
TIL clinical trial at NIH is using the similar but not identical immunology approach to treat solid tumors( ie:CCA) . It is worthy to take a look if anyone wants to go with immunology as treatment option. And I think it is free if you are qualify.
God bless.Hi,
Welcome to our corner of the CCA world.
The key for 2nd opinions is to confirm whether the diagnosis is correct,and the treatment is appropriate or not for the diagnosis. If I were you, I will first to check out whether surgery is an option first, if not, then check out whether interventional radiation is possible or not, if not, then oncolog consult and treatment may be the best option.
Surgery is the ONLY possible CURE for cholangiocarcinoma, that is why to seek surgical consult first. From the above message you wrote, I presumed that your husband’s cancer is unresectable and interventional radiation was ruled out too;if so, you have already done your home work by going for a 2nd opinion at MD Anderson for medical oncology consult. In my opinion, I do not think you need additional consult by going to Mayo in JAX for the same oncology consult to reconfirm the chemotherapy treatment plan unless you have not gotten consult on surgical and radiation.
BTW, is your husband being treated at Emory@ATL ?
God bless.Hi,
On the other hand, you may need to pay more attention on the formation of blood colts,( ie:DVT or PE or any kind of venous thrombosis) due to the associated risk of high platelets count especially after long term chemotherapy.
So be careful.God bless.
Hi,
I think due to the fact that your sister had CCA and passed away on July 27, and you have diagnosed with APBJ, I truly understand your concern. If I were you, I will ask your GI doctor about how frequent you should have EUS(endoscopic ultrasound) done ,(ie:every year ? Along with CA19-9 may be every 6 month or so?); I am just a patient and not a doctor.
Below is a link that may be of interest to you in the near future.God bless.
Hi,
I concur with what Lainy said above, only the liver surgeon like Dr. Chapman in MO or Dr. Sonnenday in Univ. of Michigan or Dr. Gore at Mayo Clinics in MN can tell you exactly what is the best choice for your Dad.
The following link may help you understand how the surgeons making their decisions ,resection or liver transplant.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=61467#p61467
God bless.
Hi,
please check the link below.http://jaundicecure.hpage.co.in/obstructive-jaundice_38290400.html
God bless.
Hi,
below is some info, about y-90 and chemotherapy treatment side effects after 1,3,and 6 month. But you may have to read the entire article to get the specific answers you need. I personally think that your problems maybe related to the side effects of both of the Y-90 and the chemotherapy.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=63575#p63575
God bless.
