pcl1029
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Hi,
You mentioned it may be hilar CCA,thus the tumor originated at the Y site; they are the bile ducts just EXIT the liver and the left and right bile ducts join to form the common bile duct. And hence called extra hepatic CCA.
IF I were you, I will seek Northwestern IR consult first, then Univ. Of Chicago consult of systemic chemotherapy to follow.
Chemotherapy to follow or not is not absolute ; may increase the quantity of life but will decrease the quality of life. I personally will not consider this until I absolutely have to.
As most of us know by now, all this chemotherapy,targeted therapy, interventional and oncology radiation treatments are ” palliative ” in nature; even liver resections, the medical community does not call resection a cure, but “possible cure.
I myself regard the CCA as a chronic disease with emotional roller coaster rides.God bless.
Hi,
I believe to eat carefully whatever the patient wants ,more protein but much less meat with fat . More vegetable and fruits too.
I do believe patients of this disease should drink 8 glass of fluid ( 8 oz each) to have the minimum balance hydration to deal with the side effects of chemotherapy or targeted agents like diarrhea ,night sweat and electrolyte imbalance.also by doing so,less the chance of developing kidney problem.
With regard to PD-1/PDL-1 immunotherapy , actually there are four drugs under clinical trials now and I believe One of them will be on fast track approved in the second half of 2014, then doctor can use them off-label for CCA. If that is not fast enough, and if you qualify for TIL at NIH, everything will be pay for as one of our member did it in the past with one treatment and one year of stable response .
My personal thinking is that,if we, the patients, can hang around for 5 more years, there will be at least a much easy to tolerate regimen for us ,and if we are lucky and by the Grace of God,may be even a cure will not be out of the question.God bless.
Hi,
My guess is your mom has stage III CCA,extra hepatic.
Since lymph node is involved and there are multiple focal involvement as well as other tumor burden in the hilar areas and the left and right lobe. The best treatment will be systemic chemotherapy like GEMOX or combined with targeted agent. Microwave ablation or RFA will not be the choice due to multiple tumor location.
If your mom do not want chemotherapy or targeted agents that can be taken by mouth for easy of use . Chemoembo or radioembolization will be the next choice if you mother passed the pre prodcedure test.
Liver resection may be out of the question at this point since lymph node and both lobes are involved.
If I were you ,I will have 2nd opinions by medical oncologist like Dr. Cantinachi, and IR 2nd opinion at Northwestern univ. IR department. To see they can perform radioembo on your mother.God bless.
Hi,
I guess we have to wait for the biopsy result to know the truth; but since it is a “flat” area and not lumpy as your described ,I would be doubtful that it is CCA related.As always, I can be wrong too. Neupogen administration can cause pain too esp. bone pain.
If I have pain or fever, I will take ibuprofen with food(ie:Advil 400mg), for me it is more effective than Tylenol .God bless.
Hi,
I never read an article that CC can be seeded in the skin but it doesn’t mean it cannot happen.
I presume the outer cannula where it touches the biopsy tumor area,when it withdraws back to the top, it, in theory, the outside of the cannula can also carry tumor cells along the track. But most of the time,the chance of seeding that I read is much less than 10%( ie: around <2%).
May I ask why the suspicion like this arise to your sister?God bless.
Hi, Tara,
Don’t be scare; I am a patient of this disease for 56 month now.
The link below may be of interest to you , and I have just updated my medical history this afternoon.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=76800#p76800
God bless.
Hi, Mary,
It makes sense to do chemotherapy first and repeat scan in three months as Dr. Jalve suggested. If the response of the chemotherapy works,you may consider liver resection at that time if Dr. Chapman think he can do the surgery;make sure you ask Dr. Chapman for this approach if the biopsy is negative for CCA.
What concern me the most is the cirrhosis problem and how much the liver reserve that your husband has left for such big surgery.God bless.
Hi, Nikki,
may be you can e mail him to see what he can do for you ?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=76979#p76979
I had a CA19-9 value of 37 when I had my first resection of a 5x6cm tumor.
Now, for the third recurrence, I had microwave and cryoablation to burn off the tumor and on Tarceva, There were no tumors but some inflammation left at sitem ofm the procedure;the PET scan after 8 weeks looked overall “stable” but CA19-9=61; await next scan in Febuary,2014 and as always, I have make arrangement to get a second opinion at Mayo Clinic in next January,2014 and a up coming medical oncologist 2nd opinion at University of Chicago.It is indeed a roller coaster ride for sure.May God’s Grace be with you and your father during this holiday season.
God bless.
Hi, everyone,
“http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65176#p65176“
Now, I can give you an answer about the message I wrote earlier, check link above.
After 6 months of Xeloda adjuvant therapy after the second resection, I switched to the maintaince dose for 6 -8months ; CCA recurred for the 3rd time . Therefore ,at least for me , the reduced dose of Xeloda as maintaince therapy did not prevent my 3rd recurrence. Another lesson learnt .
I think the best way is to have PET or CT scan and lab work every 3-6 month to catch the recurrence early enough to allow more options in future treatment in case the CCA comes back;eat well; build up the strength and continue to keep up to date with the knowledge about this Chronic disease. This may be the best solution after the adjuvant therapy is completed .
God bless.
Hi, Gavin,
Say hi and merry Christmas to your mum first and thanks for the articles.
The BEARS looks good to win this Sunday
Enjoy your Scottish villa ? Of course.God bless.
Hi, Evan,
I do not think you should read beyond what it has presented.
1. The choice of GEM/CIS is the level 1 , first line ,the standard regimen for CCA.
The link below May be of help to understand the current thinking about chemotherapy for this disease; just read the summary will let you have some idea if you want to.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
2. If you mom went thru the ” multidisciplinary team evaluation” of her disease ,then if you still have question about the surgery options, get a 2nd opinion from a liver surgeon to see what s/he can do. I don’t know any liver specialist from Ireland ,hope you can google it and find a good one who is familiar with CCA..
3. The two MRI were just one week apart, so I will not pay much attention about this since relatively speaking, CCA is a slow growing tumor, therefore the two MRI results within a week apart will be more or less identical without any significant changes.
4. 2week on and one week off are most frequently used interval for GEM/CIS.
To allow the body to recover from the toxicity of the chemotherapy and the bone marrow of the patient to have enough time to replenish the loss of the blood cells. Each time before each cycle starts, the nurse should draw lab ( CBC,BMP) before the chemotherapy treatment begins to let the oncologist to decide the treatment should be proceeded or not. Pre-determined and fixed “2weeks on and 2 weeks off ” schedules is uncommon unless your mom has other co-existed health conditions or the oncologist is treating your mom as part of a clinical trial to find out which interval 2/1or2/2 is better., or your country’s treatment protocol dictated as such. I do not have a real answer for this question.God bless.
Hi,
This link may help a little as far as scientific research and study is concern.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=45924#p45924
As far as I am concern, if really wants to, I will take them on the off week of the chemotherapy cycle.
God bless.
Hi, Marco,
Thanks for your best wishes.
Microwave ablation is to burn off the tumor or tissue lesion and destroyed them. The same principle as RFA.
God bless.
