Let me share my story and hopefully of benefit as an ongoing a case study.At age of 57, I had acid reflux off an on for a couple years taking Pepcid ,the H2 blocker to relief sx. Lost weight for about 5 lbs over several months during 2009. ,drink 3-5 cups of coffee daily. Taught part time twice weekly in college in addition to regular day job since 2008.(may be the added stress decreased my immunity and CCA started to grow. I am also a chronic hepatitis B carrier since birth.)
May2009 diagnosis=intrahepaticCC stage IIB new classification=stage 3
June 2009 left lobe resection,with clear margin 1.5cm. do RFA on 2 spots remaining on the right lobe .no metastases to other parts of the body.
August 2009 start Gemcitabine 3weeks on and one week off,then drop to 2weeks on and one weeks off. for 14 months ;PET/CT scan(that is PET+CT (WITHOUT contrast) every 3-4months till
October,2010 with no recurrence.;Oncologist give me three options for the next step of treatment
1.no more chemo
3. start prophylactic dose of Xeloda(capecitabine) twice daily.1000mg twice daily after meals with a full glass of water;14days on and 7 days off =1cycle.(result not proven,more or less is his clinical judgement and experience)
Since there is no way I could know whether the gemcitabine is really working if I continue to take it forever.and I think I can try prophylactic dose of Xeloda later.
I choose no chemo but switch to CT scan WITH contrast to monitor the CC.
Sometimes PET/CT will not show any activity of the CC if you are still under chemo treatment because the chemo slow the growth of the CC but not completely kill it.
April,2011,CT scan WITH contrast reviewed a new growth(different site) of 1.5cm;MRI a week later discovered another new growth of about 2cm.(MRI is better in finding liver lesions <2cm in size)
May,2011 my liver surgeon indicated that the lesions are small enough that chemoembolization and RFA will take care of the problem;no need to have re-resection (a major surgery compare to chemoembolization with RFA) Chemoembo is using the chemo to surround the tumor and starve off the blood supply to the tumor;RFA is applying radiation to the middle of the tumor and kill it.
5/10/2011,I had the chemoembolization done with mitomycin and Adriamycin .the procedure took about one hour total for the 2 lesions and was well tolerated.I spent 1 day in the hospital just for observation. I was given prescription for Levaquin 500mg orally daily for 5 days for preventing infection from the procedure.
5/23/2011 ,I had the RFA(radiation frequency ablation) done on the 1.5cm spot in the liver total time in OR and PAR was about two hours,the actual procedure time of the RFA was only 45min.(4cm in dia. of burning to obtain a larger negative margin) ; they could not do the same on the other spot;it is too close to the diaphragm and abut to the hepatic vein and I need to go back to have an resection to take it out .
Again the RFA procedure was well tolerated and I spent one day in the hospital for observation. Levaquin RX for 5 days again was given to prevent infection . No chemo is needed at this time. the chemoembo will take care the CC until they will perform the resection.CEA value by half to 0.8 and CA19-9 dropped by 10 points to 16 for just that one tumor by RFA.
October 24 2011,resection was performed on the 2.3x3cm tumor ;completely resected.I also used the tumor tissue to order "Target Now" biomarkers report from Caris Lab for chemo sensitivity reference to be used in the future.This time the CEA went up by 0.4 to 1.2 but the CA19-9 dropped from 26.4 to 21.4 one month post-op.
"As of Feb.2012, the ASCO still indicated that the "Target Now" chemo sensitivity report and other bio marker lab test of chemo resistance or for diagnosis or prognosis purpose beyond clinical trial settings are of no PRACTICAL value in the overall cancer treatment plans.( I am KRAS wide type , EGFR positive ,tumor is moderate differentiated.)"
November 24,2011 per oncologist to start Xeloda 1500mg twice daily.a month later,2-3 diarrhea/day and redness of the palms and minor skin peeling and cracks prompted him to decrease dose to 1000mg twice daily.PET scan to follow in a couple month.
On December 29 2011, I went to Mayo for a 2nd opinion on oncology medical and hepatology consult. Standard chemotherapy without targeted therapy was given as treatment if current one won't work later; at this point, the medical oncologist agree with the Xyloda BID regimen,but only for six month. Hepatologist consult went really good,MRI and MRCP was performed on site and biloma ( 9cmx5cm) was discovered but appeared as long as there is no infection , pain , fever or chills developed,it will be fine. The biolma will self absorbed and can be disappeared over time.. And I don't have any symptom .Nexavar was mentioned as a potential targeted therapy that I may consider if needed in the future.
10/9/2012, follow up PET is clear. Medical oncologist follow up recommended to continue Xeloda maintenance therapy for 2 more years.
2/22/2013 labs normal, bilirubin=0.7 MCV=107, RBC=3.78 WBC =7 , I believe the above higher MCV and bilirubin is related to the side effects of Xeloda; I will take B12 ,ferrous sulfate 325mg and one multivitamin daily to resolve my anemia . Liver enzymes AST,ALT are normal but the ALK phosphate=34 is a bit lower than normal .I think that is because I took vitamin D3 2000 unit a day also and I may need to cut it down a bit. My CEA=1.8 and CA19-9=21.
Currently(2/22/2013), I take 1000mg Xeloda twice daily , 2 weeks on and one week off till otherwise; I also take Oncozac ( yunji extract,雲芝)3 capsules twice daily as an immunostimulant ; Coumadin as blood thinner for DVT; Celebrex 200mg twice daily as antiinflammatory agent that may help to fight cancer,Entecavir 0.5mg daily for Chronic Hepatitis B and Tricor 145mg daily for marginal high level of triglyceride; multivitamin once a day with B 6 , B12 ferrous sulfate; potassium tablet and neutrophos packet for low potassium and phosphous level as needed.finally, I am trying ,on an off and on,as needed basis the "shi quan da bu tan" 十全大補湯-in Chinese herbal practice or called (juzen-daiho-to)in Japan Kampo herbal list I try this complimentary herbal medicine on off days of Chemotherapy it helps me when I am feeling lightheaded and tired due to anemia and fatigue.
3/4/2013 CT scan shows the biloma decreases its size from 9.4x3.7 to 6.8x2.5 & the femoral vein thrombosis resolved and no new lesion is found.
So far thru my research,there are no effective chemotherapy for recurrence of CCA.
RFA, microwave ablation , IRE,TACE and radioembolization are non-systemic treatments that can extend my survival time as an intrahepatic cholangiocarcinoma patient and the PDT and IMRT (ie: Cyberknife),,nano knife,SBRT are treatments for Extrahepatic cholangiocarcinoma patients.
But none of the above treatment choices is a cure for CCA.
Only surgery can provide the onlypossiblecure for CCA.
and the recurrence is high (50-75%) for CCA.
Of course, everybody thinks differently.In my case,I want to find out whether I need to be on gemcitabine forever and I make the decision with the best way that I know how to monitor my CC. so when the CC come back,I still have a better chance to deal with it. As a patient, I can say the 14 months of gemcitabine treatment is difficult both psychologically and emotionally.I cannot imagine of having the Gemzar for life . Of course, I want to live at least up to the national average of 78.5 years for males.
(I am 63 as of 2/2013.)
For those patients who have been on chemo regimens other than just Gemzar,I tip my hats to all of you for enduring such unkind treatment;for I know most of the side effects thru my practice.Sometimes as a PATIENT,your gut instinct may serve you well.
At this point I will not attempt to use any of the targeted therapy agents because of the toxicity or herbal medicine except as above because of the unproven benefit. And because recurrence is very common(65%),I think I have no choice but to accept it and I will continue to learn more about this disease and share with you about my journey.
Finally, as recurrence is very common , try to view CC as a CHRONIC disease like our Marion said may not be a bad idea, like hypertension or diabetes ,then the negative psychological and emotional impact will be much less for the patients as well as for the caregivers when we first heard of this disease and we can devote more positive energy to prepare learning and treating the cholangiocarcinoma at hand.
Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.