pcl1029
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Hi,
Ca19-9>129 is indicative of cholangiocarcinoma but not absolute.
Recurrence is between 50-75% for cholangiocarcinoma depends on location of the tumor site.
It came back after20 months in my case even with 1.2cm clean margin and 14 month on Gemzar.
God bless.Hi, Lainy,
This shows one thing that a few of us can do on this board for other things;but ONLY you can explain the passion and emotional dimension on this kind of tough issue so privately and provide comfort to those who have difficulty to accept the reality.
God bless.Hi,
Honestly ,without Eli and you Bruce,among others,the medical information on this board will not be as vast and accurate as today right now; thanks all for your contribution on the research side. I frequently ask Eli to help me in looking into hard to find information,esp. computer related topics; I talk to Gavin via email for his undying devotion and overall knowledge ,understanding and interest to the members of this board. All of you,with others like Lainy, Karen,Barbara,among others,are indispensable . As you all know,I am a patient and I am a realistic person. and therefore my contribution to this board is limited to what I can do now rather than,like all of you, unlimited in the future.
Bruce, one thing I want to say about your wife but did not in the previous message.(because,I do not know how well you will response?) is about the “”poorly differentiated” cells comment on then pathology slides.
The grading for my 1st. resection is “moderately differentiated” and I have 1.2cm clear margin, I have ICCA and was on Gemzar for 14 months,8 months more than it suppose to be;after the adjuvant chemotherapy, 6 months later it came back on a different site FAR away from the original operated site.. so what I am trying to say is be vigilant and keep on researching, the chance of recurrence is no joke.
God bless.Hi,
if you don’t mind,the links will let you know what other members think about the situation that may be similar to you.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65176#p65176
God bless
Hi,
The stage (TNM) has both pTNM=pathologic( pT1N1MX in your case) and cTNM= clinical classification.
And as you may understand that two classifications may be different upon surgical results returned and clinical presentation.
Currently AJCC staging Manual,7th edition(2010) is the one that American physicians used.Personally ,I do not think the p-staging is as important as the c-staging classification. In this sense, your surgeon’comment after the resection was more important than the pTNM staging itself.
Anyway, based on the messages you wrote on this board; your wife might have ECCA .”” according to your description,spread to the liver and one hilar lymph node”. And resection was performed with the right lobe completely removed along with some bile ducts and part of the left lobe and the affected lymph node. If this is correct, then your wife will have a better chance not to have recurrence than ICCA.But it will be still in the 50% as compare to 75% for ICCA.
If you worry about the MX staging; ask the oncologist to order a PET scan and you will know the results.(but please remember PET is not 100% proof of the findings that some one has cancer ;it can be other problems as well)
I rotate my q3-4month scan between PET and Ct scan to get a better picture of my disease condition.
chemoradiation treatment after adjuvant chemotherapy is acceptable. I only had Gemzar after the first surgery and Xeloda after the 2nd resection. No radiation was provided.
The question you should seriously considerNOW is what should you do after the chemoradiation? Follow the doctors recommendations of Ct scan every 3-6month and then after a year or two, change to every year and hope the cancer will not return; or be more progressive in the anticipation of the return of the cancer and refine your thinking and research toward prevention or delay such outcome.
I am happy that you devote so much energy to take care of your wife and she is very lucky to have you at her side. You and Eli are the few men that is details oriented and precise in your pursuit of information and knowledge and in so doing directly and indirectly contribute to this board substantially.
God bless.Hi,
The staging (TNM) for ICC are Stage 0,I,II,III,IVA and stage IVB.The staging(TNM) for perihilar CCA are stage0,I,II,IIIA,IIIB,IVA, and IVB.
The stageing(TNM) for distal CCA are stage0,IA,IB,IIA,IIB,III, and IV.
from uptodate.com 9/14/2012 literature review and Eli is right that they can change frequently ,and there are new staging system proposed by the ASIA medical group and the Barcelona system of Spain.
I never ask oncologist what stage I was . My surgeon told me the stage which was different than before my second resection.
God bless.Hi,
As you know, I am not a doctor but a patient of ICCA for 44 months.
Prior to my recurrence ,the CA19-9 monthly trend was trending upwards for 6 months but never higher than the normal range. As general observations suggested that increased CA19-9 is possibly associated with inflammation such as infection,bronchiolitis,emphysema and may be in patients with diabetes.
(Clin Chem Lab Med 2009;47(6):750-754).
However, in a study of 208 patients using an absolute CA19-9 level of 129 , shown a sensitivity,specificity,positive and negative predictive value of 78,98,56 and 99% for cholangiocarcinoma.(uptodate.com,literature review, June,2012). In short, CA19-9>129 may be indicative of CCA.
I have read all your posted messages and as a patient suffer the same disease as your brother,Bruce, I truly understand what he has been through. I hope the team of good doctors/friends that he has will find a way to treat him beyond what had been said in the medical articles. Have the team of doctors ever consider using the targeted agents to treat your brother Bruce?
God bless.Hi,
Folfirinox as you know consist of leucovorin+5FU+irinotecan+oxaliplatin; 5FU irinotecan and oxaliplatin all three can cause rash( esp. irinotecan =13%) and all three list hyperbilirubinemia(irinotecan=83%,oxaliplatin=13%,5FU=7%)
as side effect which can cause itching;5FU can also causes skin irritation;both 5FU and irinotecan have pruritus as side effect;apart from that neuropathy too.Neurontin can be prescribed by your doctor for nerve pain if s/he agree ;
Benadryl cream and other OTC cream like hydrocortisone 1% cream for itching can also be used. Lainy as well as other caregivers on this board mentioned another cream(I forgot the name)which is very good for the rash too.
BTW, your regimen dose not include “targeted agents” like sorafenib or erlotinib or cetuximab,therefore there is NO relationship between “the worse the side effect of the rash is ,the more effective of the medication will be.”
God bless.Hi, Eli,
I understand it is for rectal cancer and preoperative; May be I should clarify more . (and it is nothing to do with the above citation since I look at a lot of article today.)
That is I should add “lately I have seen a lot of 5FU infusion pump used (48hr) instead of 5FU infusions for a few hours at the chemotherapy treatment center for colon and other cancers in the place I work;I have also read about Xeloda being used in chemo-radiation instead of 5FU.” But of course I do not know whether it is for CCA or not.God bless.
Hi,
sorry to hear about your situation.
Call Dr. Kato tomorrow at New York Pres. Hospital and get his consult. He is one of a kind surgeon who have the will and skill to try new things and he is a world renowned liver surgeon.
God bless.Hi, Gavin,
no problem, but it won’t help the BEARS. San Francisco is the golden gate that the BEARS must pass through in order to have a chance.
Be sure to say hi to your mum for me. Here become colder in Chicago ,but sunny today.God bless.
