pcl1029

Hi, Dan,

Blood clots are a common problem for CCA, Lovenox is a good choice for PVT,DVT at home, Coumadin and other newer kind of anticoagulant works fine too without routine monitoring of PT/INR level like Coumadin required.
Since I do not know about your case,like tumor size, location of the tumor, associated disease(comobidities ), I cannot provide more info and experience to help you more. BTW, I am only a patient and not a doctor.
Cholangiocarcinoma is a tough one to swallow and treated, but unless your wife were treated at at one of the hospital familiar with CCA, most of the oncologists do not have a clue but just follow the book giving GEM/CIS standard chemotherapy.
Other way to extend the quality of life besides using chemotherapy is interventional radiology and immunology clinical trials like anti PD-1
No body know how long a CCA patient can live with a good quality of life, I live for 4 and half years, some live 6 or seven more years . And of course some live just for a shorter period of time. But knowledge of this disease can help, in my opinion, to provide a better outcome.
So, if you do not have a second opinion on your wife’CCA, you can try MD Anderson at Houston For a GI cholangiocarcinoma consult, or MASS GENERAL or John Hopkins for a consult that involved GI oncology, interventional radiology and radiation and liver specialist ( multidisciplinary consult). Good luck and
God bless.

Hi,
PET or CT scan every 3 months, Lab work included CA19-9 and CEA for tumor markers,PT/INR for blood clots,BMP for liver enzymes ,electrolytes and kidney function; and CBC for white cells and red cells and platelet counts every month.
That is how my CCA is monitored with 2 recurrences in the past 4 and half years.
CCA is like a roller coaster ride, unlike other cancer, CCA recurrence is not uncommon. Good luck and
God bless.

Hi,
If she can drink, then Ensure, Carnation Breakfast Drink and add protein power will be one way to boost your mom’s energy; otherwisr talk to a GI doctor for advise of other kind of nutrition support such TPN if you really want to go that route.
God bless.

Hi, Lisa,
CCA is always like a curve ball and is really hard to predict it’s path. It is difficult at times,at least for me, to fully know the right way to treat this disease.
May I ask why to wait another 4 weeks for PET and not doing it ASAP?
Your thinking about the CA19-9 triple value rising based on your experience is always a good and logical precaution to prepare for this disease,just in case.
Just a suggestion,
I forget where you get your radiation treatment, but can you find out whether you may need to use RFA,Microwave or even cryoablation instead if you may reached the upper limit of the maximum radiation dose allowed by using SBRT 4 or 5 times as I remember in your case.Or ask the doctors how many MORE times you can still use SBRT for treatment purpose.
I am waiting for the consult from Mayo about the lymph node and the confirmation of the other two RFA results to see whether the post-2month results is indeed correct as the local radiologist said.
Thanks always praying for me, and I will do the same for you.
God bless.

Hi,
I am a patient of ICCA for 54 months now. I am 63.
Like your mother, I do not like the side effects of chemotherapy;but Xeloda by mouth twice a day;14days on and 1 week off is a relatively easy to take and the side effect is much better than GEM/CIS. I was on Xeloda for 14 months or so without difficulty.
For multiple tumors in the liver, radioembolization is one of the method to extend and provide quality of life to your mom. Cryoablation can be done to control the lymph nodes IF NOT too big and too many. Systemic chemotherapy ,however, will provide better overall coverage of controlling both the tumor growth in the liver and in the lymph nodes.
I do not know whether those interventional radiology(IR) procedures are available thru Public Social Health systems, but you can ask the oncologist to get you a referral to see them I guest.
God bless.

Hi,Carl,

You are a gentleman in expressing of how you feel about big pharma’s inability to satisfy the need of the patients. Nothing need to say sorry for others and in fact you are not off the target that much.
Big Pharma are business entities and they serve their share holder’s interest first. They do not operate on providing cures for disease, they operate on margins. And I know you may have known about this
. I ,at times,feel the same way as You do,even I know FDA has all those “fast tract or breakthrough status” and “orphan drug “pathway to encourage drug companies to apply for new drug application. so far for the last three years, FDA on average had been approved 25-30 new drug entities .and that was from the tens of thousands of new found polymers ie: small molecules to proteins from the labs ,going thru the evaluation process,then put thru animals studies,to eliminate down to only hundreds and go thru the IND( investigational new drug) applications from FDA and start the clinical trials ,by the time it reach the end of phase II, the chance of going all out into phase III may be down to just less than a hundred . And to completely become a new drug and then apply NDA and be approved by FDA,it will take for about a year.
In short, for a chemical compound or polymer discovered from the lab to become a new drug approved by FDA is between 7-14 years.
The fastest approval by FDA that I knew of thru an official of them was 6 months from start to finish and I believed the new drug approval was thru the “orphan drug status.
I am as frustrating as you are in finding better solutions for your wife and myself and I understand that as patient advocates, we ,ourself have to do something of more constructive for this disease than just talking about it. Your answer in the other message about “going thru a new mall” is one of the best suggestion to solve the current problem about our web site.
You are not demanding the people and this web site to do this way and not that way to satisfy you,you want to help the people who will visit the mall later and have a more enjoyable shopping experience.you are a very considerate person.. You just suggest and explain your intention in a friendly and easy to understand way. This requires good communication skill and temperament to do that and in doing so, you only do not offend any body but care about others feeling. For that I am grateful .
God bless.

Hi,
Intrahepatic liver tumor ,,sizes<3cm or number not more than 3-4 lesions, chemoemo first followed by either RFA or microwave ablation ,based on medical research articles that I read, will have the best chance to be completely ablated,that the result will be on par or the same with liver resection but without the long recovery period of surgery.
God bless.